Charlie Cooper

HAPPY BIRTHDAY CHARLIE!

2010-05-03T09:37:00.001-06:00

Charlie's With Me

2010-04-18T21:42:00.004-06:00

Char's uncle Juan found this video a little while back and Char's superannuated auntie felt it prudent for his blog. Respecting my elders, as I always do, here it is. This is by Collin Raye who wrote about his granddaughter who recently passed. She was also infirmed much in the same way as Charlie and should I ever be privy to the presence of The Almighty I'm certain it will only be because Char said, "He's with me."

I used to be the guy that gave the awkward stares and wasn't sure how to act around those more pure, but now I don't even really notice when those stares are directed at Charlie. We get them to be sure but Britt seems to be the most in tune with the attention Char gets in public. It's pretty humorous when Britt sees someone eyeballing his little brother and he'll stare right back and very nonchalantly mention, "He's my brother and he has a brain injury."

Here's the lyrics, mostly for B-Low who won't be able to hear the song.

She’s with me
I proudly tell the maitre de as we arrive
He seems surprised
In a clumsy moment as he looks for room, for her blessed chair
A table stares, and their eyes show only pity
as they try to sympathize
Oh, how difficult that must be, look away
Day after day, they’ll never see, the joy you bring
Only happy at the times I know that she’s with me

I wear it like a badge of honor at the mall
I hear her call, the only way that she is able with a cry
Time to go bye bye, she can’t say why
Maybe tired, maybe hurting, god I wish that I could tell
Do I ever make her happy for awhile
To see her smile, makes my week,
Though she can’t speak,
She let’s me know she feels my love when she’s with me

I know just what heaven looks like when I see that perfect face
For no other mortal heart could be so fair
I myself so weak and weary, so imperfect as a man
How could I be the one you chose to care for our girl
Never done a single deed to earn the right to share her light
Though it’s such a painful road we walk each day
Lord you have your ways, this I pray
On the day I stand before you, she’ll stand right by my side
When you look upon me, head hung down in shame
I’ll feel the blame, she’ll look at me,
And then she’ll speak, in that precious voice
Don’t worry ‘bout him my lord, cuz you see,
He’s with me

Charlie's Training...Are You?

2010-03-18T12:08:00.005-06:00

Relax... It's Only Been a Month... Or So...

2010-03-15T11:24:00.003-06:00

Liars... we/I am/are filthy/dirty rotten LIARS. How presumptuous of us to suppose that we would really maintain this blog appropriately and concurrently promise that as much would occur. Let me first speak as plainly as I know how. Resolutions, esp. those made by others invoking your involvement SUCK/BLOW. My wife's intentions were pure in suggesting that we would effort to more frequently update. My cooperation however was verily ungenuine. I'm hoping that my apparent/obvious lack of enthusiasm regarding the blog isn't being construed as a lack of appreciation for the august effort, therapeutically, that so many of you are involved in. We are in a continued/constant state of thanks and indebtedness.

Charlie's therapy is like a swiss clock. All of his Angel's have become rather proficient at their art. Progress is slow but we still see new things here and there. The most significant of late is his awareness. In undertaking this program we fully expected his progress to be purely physical and while we have reached some mile stones in that regard it is his mental faculties that have improved the most as of late. Charlie has started to recognize and respond appropriately to different individuals and he does have his favorites. He has started to anticipate certain things, mainly food and his overall awareness is getting better every day. It's as though he's starting to figure out where he is in the world. He doesn't really care for patterning and he's not afraid to let you know about it. The rest of therapy he doesn't mind. His favorite is songs and hot packs.

I think it apropos to use the blog to thank Suz for her labors. Tirelessly she arranges and rearranges varying schedules ensuring that Char's therapy runs smoothy. Surely many of you have come to know her and as we offer our gracious thanks to all of you we also say thanks to her. Suz I'm sure Char will put in a good word w/ the Almighty and the hours you have sacrificed on behalf of our dane bramaged boy will count themselves advantageous in The Book of Life.

A fine video was constructed of all of you Angels and as soon as I educate myself on how to upload or find a capable party to pawn it off on it will be posted. You should look forward to that.

Update for Rob

2010-01-30T15:49:00.004-07:00

This is Megan and I'm updating because Rob is too lazy.

I love Charlie so much and he has learned so much in the past 3 months. Ever since Angel and Rob have started therapy with him, he has improved tons and I am so proud of him. I love coming to therapy and seeing how much he's improved and how he can go super speedy down the slide. I love knowing he can hear me when I talk to him, and he reacts to hot and cold and rough and smooth, where at the very beginning he hardly even felt it. He's one strong kid.

I met Angel and Rob a little over a year ago. They have changed my life so much in the past 3 months. They have taught me so much. I cannot change their past like I would like to, and make all of this disappear. But I think also that it has brought a lot of joy and happiness into their lives, where it has brought so so much into mine. They have met many more people, come closer to others, and seen a miracle right before their eyes. As I have seen a miracle before mine.

Charlie is doing awesome. He's the strongest little boy I have ever seen, I love him more than words can describe. He is my hero.

Meg

New Resolution

2010-01-21T21:37:00.004-07:00

Rob and I have agreed to update the blog more often. It's been difficult recently to write because we see so many of our readers on a weekly basis and they already know how he's doing. Sometimes better than we do. Nevertheless, we have made a deal that when one of us does an update the other has a week in order to update again, so you should be hearing from one of us hopefully every week.

Today Charlie and I had a meeting with 2 audiologist, the cochlear implant representative and his hearing therapist. The meeting was set up several months ago to brainstorm ways to tell if an implant is working when a kid is unable to communicate. Normally with an implant the person goes back to the audiologist several times to fine tune the volume or programming so it isn't too loud and distorted or too soft to hear. Char just likes to complicate things. From testing we knew the implant was sending the signal to the auditory nerves but the test that records if the signal was reaching the brain had been negative. When that test was done I was reassured that it is negative in about 10% of people that can hear just fine but it still didn't give us what we were looking for. We didn't know if the signal was making it to the brain and if so did Char's brain even know what to do with that kind of information.

A few weeks ago, during Char's hearing therapy sessions with his Angel's we started seeing more and more responses to extremely loud sounds. At first they were very infrequent responses and hard to reproduce. He might occasionally blink or flutter his eyes when the fog horn or diesel truck horn (thanks Sammy) was blown, or perhaps stop moving his arms when the pots and pans were being banged together right by his ear, or widen his eyes when the synthesizer (thanks Troy) was played at maximum volume. Then we started to see more and more of these but only to loud sustained noises. With this new info the audiologists reprogrammed his implant. Mike the rep, turned the implant on as high as it could go and Charlie gave subtle but definite responses to nearly every test sound. He said some kids cry at this level but Char was all smiles. We were all really excited.

For the next 30 min we discussed how to keep the implant on his head now that he moves his head back and forth so much. The magnet strength was increased to the maximum with the caution to watch diligently for skin breakdown. He may be trying out quite an array of headdresses to keep it in place. Next time you see him you can comment on how good it looks and he might even hear you . :)

I Found It...

2010-01-13T18:15:00.005-07:00

This blog must have been lost somewhere. That’s my only excuse for the non-existent updates, pictures, &c. Where to begin? It’s only by my own indolence this question is asked. So much has happened/changed since our cyber family was last made aware of Charlie’s well being. Left up to me I’d give a brief account of Char’s newly attained faculties but that would leave me in a less than amiable place w/ my dear Bride.

First let me offer our continued thanks to all of the “Charlie’s Angels” who w/o you none of Charlie’s progress would be possible. When Char’s sweet little body was neurologically devastated Angel and I were unsure how we would handle our straightened circumstances, but now after seeing the Herculean effort undertaken by over 120 of you “Angels” a way has shown itself. Every week 114 man-hours are devoted to helping Charlie’s circumstances become less narrowed. Our thanks will never be enough to show you how grateful we are for your labors but sadly it is all we have to offer.

We have been working w/ Charlie for just over two months and to appraise his progress one needs to understand his developmental progress/state before we started. His evaluated neurological age was 2 months old. His physical competence was non-existent w/o any movement that could be interpreted as meaningful. Vital responses to pain, sound or light were a no-go. Char basically lay around, cried and writhed in discomfort, which was invariably related to his extreme boredom. Those who have been gracious enough to assist Charlie in his convalescing have been able to experience first hand his marked improvements. He is now responding appropriately to tactile stimulus, his vision has become his most keen sense, he is using his arms a and legs in a meaningful manner and can motor down his slide pretty quick (should he be in the mood) and when he lays on the floor he’s gotten pretty good at holding his head up for short bits of time. His hearing is still a concern but a couple of weeks ago he started responding somewhat consistently to really high pitch noises. However all this aside Angel and I are most impressed w/ one thing. His awareness. All you have to do is spend a brief period of time with him and you can tell that the light is on. Smiles, grins and long sustained glances have become commonplace. But the funniest thing is that when he gets sad he’ll cry a bit here and there, then when he sees that your there he lets go with the most cute/pathetic cry that actually sounds like a normal kid crying w/ his little bottom lip all pouty. It’s awesome.

Our plan is to continue w/ the program until we meet our 6-month goal where upon completion we will evaluate whether or not the progress Char has achieved is worth the inconvenience we have selfishly imposed on you all. Our hope is that the benefits we see will merit continuance, and that as we continue you will press on w/ us in attempting to rescue any of our little boys native endowments that the Almighty sees fit to allow.

Below is the page from our families annual memory book that my eldest sib felt would be apropos for all of Charlie’s faithful following. (Click on it for easier reading.)

Prayers for Petey

2009-12-01T08:23:00.002-07:00

A year and a half ago, I met a super sweet girl named Jenn who had spent hours making a totally awesome blanket for Charlie (pictured above). She is one of the most giving and talented people I know. She had followed Charlie's blog because of a dear friend and I'm so glad to have met her.

Now she and her family are dealing with some pretty rotten stuff. Her husband had a heart attack on Sunday and was given a 2-5% chance of survival.
Mind you that he is only 31 yrs old (I think), but he is a fighter and he has already surprised many. The words Jenn stitched into Charlie's quilt like "inspire" and "hero" apply to her and her husband too. Please join us to pray today for Pete, his wife Jenn, their two boys and their yet-to-be-born baby girl. Follow their journey here

The love and support Rob and I felt through the blog comments carried us through some rough times. I hope Jenn can feel our love too.

More Angels Among Us

2009-11-22T19:51:00.001-07:00

Speechless

2009-11-03T22:30:00.005-07:00

My name is Susan and I am emotional. I don’t want to be but I am a mess. You see, over the past few weeks I have witnessed the kindness and generosity of family, friends, and complete strangers that is (in the words of Charlie’s grandma Kathi) just beyond beyond.

When Rob and Ang asked me to work on the scheduling for Charlie’s Angels I was a bit skeptical. I had no doubt that I could create a lovely spreadsheet that would organize names and numbers but I was pretty unsure there would be names to fill the spaces. The proposed therapy for Charlie requires 114 man hours each week….EACH WEEK. We have an enormous family and Rob and Ang have tons of friends….but 114 hours?

Between those that are obligated by shared DNA, and those that are obligated by some unbelievable high school lore we covered a bit more than half of the shifts. Our (Char’s grandma’s and aunts/uncles) In-laws and neighbors, co-workers and friends signed up to help our grandson/nephew by filling even more. We even have a new blog friend (who has a full plate) that wants to help. Angel was thrilled and grateful and anxious to start a few hours each day and maybe, hopefully, eventually work up to the desired 5-6 hours each day.

When Angel said the ward was willing to help I didn’t expect much. See, Rob and Angel were building their house when Char got sick so the people in the ward didn’t really know them at all. They never watched Angel and Rob serve and love the youth (Ang was the YW pres and Rob was the most popular Course 17 teacher in the church) or saw Charlie smile with his whole face . They didn’t know what the therapy entailed or how disabled Charlie really is. Boy did I underestimate the members of the WB 5th Ward! Over 40 people of all ages have committed their time to help a complete stranger who drools A LOT. Speechless.

I ran across a talk on the blog of one of Charlie’s purest friends that was given by James E. Faust in 1984 titled “The Works of God”. I cried as I read it and realized that 108 people are performing “the works of God” with Char every week. Elder Faust said “The care of those who are diminished is a special service rendered to the Master himself, for “inasmuch as ye have done it unto one of the least of these … , ye have done it unto me.” (Matt. 25:40.)

Over the past 1 year-9 months-and 6 days, I have been blessed to be a part of Char’s life. He is a tangible reminder to me of ‘the plan’ and how important families are. My children have learned compassion, kindness, and acceptance that will make them better human beings. Char soothes my soul, and when I am with him I KNOW he is going to be just fine. My faith and testimony of the Saviors love for each of us has increased, and I have seen kindness and charity I never imagined. I have seen Rob (kind of) and Angel accept their circumstances with humor and grace and hope. Elder Foust said “Those who are close to the handicapped can frequently feel the nobility of the spirits who are confined in differently shaped bodies or who have crippled minds.” He is right.

Charlie is making progress already. Last night he smiled and kind of coo’d while watching the flashing lights on Jared’s ambulance. Angel smiled too. THANK YOU for your sacrifice and service. THANK YOU for giving Rob and Angel hope. THANK YOU for giving our little man a chance. Exploring Char’s potential would never be possible without you.

Thank you!,

Susan-Charlie’s oldest (and wisest) auntie

Click HERE if you want to read more of the talk by Elder Faust....

For Those of You Who Sluffed

2009-10-05T13:38:00.006-06:00

First off, THANK YOU everyone who showed up last night. Angel and I were humbled to say the least, and that really says something since it usually takes beat downs by Florida State and 50+ yard field goals by crappy kickers from the U to humble me. (I hate Yergesuck)

We know some were not able to make it last night (Sunday) for the therapy indoctrination due to the holiday weekend and the like, but if you would still like to be included in the volunteer schedule here's the plan. We are working on morning, afternoon and evening sessions for as many as we can fill. We are getting everything organized this week and would like to start some sessions this weekend if possible. Please let us know your schedule as soon as possible if you are interested in helping. Send emails to either of the following, Skirob00@yahoo.com or angelene318@aol.com.

How many hours a week would you like to volunteer?
Would you like them blocked together (in 2 hr increments) or spread out?
What days/times are you NOT available? (We need this info so that if we are looking for subs we won't call you.)
What would be your ideal schedule?
Are there any days this month you are going out of town and need coverage?
A Phone # where we can reach you.

Eventually we will get a schedule together on a google doc that will be linked from this blog. That way you will be able to easily access the schedule. My sister Susan Longman has graciously accepted the charge of being Char's therapy Coordinator and Director or President or Dictator or Supreme Ruler of Field Marshall or Czar... maybe not Czar, seems as though we already have way more of those than we need. What ever title you choose to call her by she will be the one managing all of the "Charlie's Angels" With her current propensity to not give a damn nor be easily offended we thought she would fit the bill regarding this charge, that and she really excells at telling people what to do. Since I have yet to discuss how she would like to be contacted by all the volunteers I will abstain, for now, and not put her cell number online for all to see and spam.

Calling all of Charlie's Angels

2009-10-01T14:00:00.003-06:00

My smok’in hot wife came up with that name and I think it’s appropriate. Anyone that is willing to help a brain hurt boy get well truly is an "Angel." So this is a message for all of you who are willing to help us. We are going to have a meet at our house Sunday night at 7:30. We would love for all of "Charlie’s Angels" to be there, however we are keenly aware that it is the Lords day and if some of you can’t make it for whatever reason we understand. We also know that many of you have wee ones in your home and that it might interfere w/ bedtimes.

The purpose of this gathering will be to give you all the details of Charlie’s new therapy program and find out how much people are able to be involved. The program is intense and we would like to utilize it to the fullest. Some families that have worked the program tell us that the more people you have help, the easier it is. If you want to help and don’t know where we live send me a note to Skirob00@yahoo.com and I’ll get you directions.

If you’re wondering why we need so much help you’ll find out. In the event that you are unable to come Sunday and do want to help please don’t let that stop you. Get in touch with us and we will gladly incorporate you into the mix. Just as a heads up, we are going to be working with Char in 1-hour blocks so come prepared with an idea of what hours you’ll be able to help. We will be going 7 days a week and as many hours during the day as we can fill. Angel and I have decided to kiss what meager social life we had good-bye and will be doing as much as we can but since I am a migrant worker I won’t be there much during the week so we really do need as much help as we can get. We both are very hopeful that this is going to help our boy.

Whew… how was that for an entire post of nothing but begging?

A Fighting Chance

2009-09-25T19:46:00.003-06:00

The fat lady has sung and yours truly has done the impossible. 55+hours of lecture is complete. Lucky for me my brain is amazing. Glenn Doman, Institute founder, said "The brain is the only container that has this characteristic: The more you put into it the more it will hold." If there is only one thing that I've learned this week it is that the human noodle is frighteningly amazing. The human brain has, by conservative estimates, a trillion cells. Now while that might not be a big number if you're the leader of the free world, to me, a railroader from Utah, it's HUGE. Now Charlie's brain has been profoundly damaged but in no way has his entire brain been hurt. Since he got sick I've been obsessed with how many brain cells he has lost, how hurt his thinker is. I've never realized how much good brain he has left. Call me a pessimist, -Guilty. I blame Gammy, my grandmother. I grew up watching every BYU game with her and no matter who the Y was playing we were sure to get beat by 50. She kept this pessimism until the Cougs were up by 30 and only then would her faulty elimination clear up. Her condition was almost Pavlovian, Cougs get scored on she'd head to the lou.

Charlie has millions- even billions of healthy brain cells left and now begins an almost impossible journey of catering to those healthy bits. The places in Char's head that have been hurt are sadly dead. They are not coming back. The miracle of the brain is that the other parts are very willing to pick up the slack, we just have to tell/show them how. That makes it sound easy, it won't be. However, we have seen this week with our own eyes living evidence that it can happen. Some have said that we are crazy for coming here; "They'll just give you false hope and take your money with no guarantees." The thing that I've discovered from other parents here is that we don't want or need guarantees, we just want to be given a fighting chance.

What we are about to embark on is going to be monumental. We are going to attempt to heal the brain of our hurt little boy and for this we just might be crazy. We are going to try to get Charlie to see better, hear well, feel pain and pleasure, crawl and maybe someday walk, communicate, use his hands and even read. I know that our doc's and therapist, who we love dearly, are going to think we are crazy. But if they are honest with you, even they will tell you Char isn't progressing. So for us it would be foolish to continue doing the same things we've been doing and expect different results. This is our biggest motivation for wanting to try something different. I'm not saying that we are going to bag all of Char's other therapies, we're not. We simply want to do more, differently. We look at this as a change in direction. For the last 16 months we've been treating the symptoms of this brain injury by focusing on stiff joints, weak muscles and foul mood. This program is designed to treat the injury itself, the brain.

What sucks for all of you is that we're going to need your help. Since Charlie got sick so many of you have been there for us; sacrificing time, effort, $ all to help our boy. Now I'm asking you again. We need your help. This program takes bodies and time. What I don't want is our plea for help to make us a social pariah. If you don't want to help or aren't able, that's totally fine. But we don't want you to avoid us or Charlie because your worried we will bug you for help. We won't. When we get home, my sweet bride will get the schedule set up and the program outlined and we will let you all know about it.

Day 3 Revisited

2009-09-23T19:51:00.004-06:00

Today was the most informative of the week so far. We really got into the nuts and bolts of the program. Most importantly we learned how much work it is going to take to carry out this program. This is going to be intense. Today was solely focused on the physical aspect of the institutes therapy methods. As part of the presentation they had several kids from the program come in to our auditorium and demonstrate a few of the techniques. It was pretty impressive. The highlight for us was when they brought out a 6 year old boy from Calif. and his parents. This boy has been in the program for about 4 years now and when he started he had a very similar neurological diagnosis to Charlie. He was immobile, no head control, partially blind and deaf, no speech, etc... This boy was demonstrating a crawling technique and then when he was finished his father called to him, and to all of our amazement this kid let go of the stand he was holding on to and RAN to his father to give him a hug. We were all pretty blown away. This was the first living proof of the stuff that happens as a result of the therapy here at the institutes. One thing that Ang and I think is a little shady is that they are, here at the institutes, very willing to talk about all of their successes but there is rarely a mention of the failures. Hmmmm.

After seeing the amazing things these kids with hurt noggins could do and all their neat tricks the staff announced that it was now time for a practicum of our own. This was hilarious, and the picture below isn't a good one but it was the best I could do whilst being very sneaky considering we weren't supposed to have cell phones in the auditorium. We were told to put on these crazy coveralls so that we didn't ruin our clothes and then we, grown people from all over the globe who had paid significantly to be here, took turns crawling and creeping around on the floor. It was hysterical. We were supposed to be relating to the process that our hurt kids are going to go through but I just felt like I was supposed to be changing someone's oil. Some of the parents really got into it and took off their shoes and socks to that they could have as much tactile stimulation as possible. Angel and I just got in trouble for trying to race each other and we most hastily had our behavior appropriately amended by one of the staff. The unfortunate part of the practicum was that the prescribed uniform (coveralls) was anything but practical. By that I mean that they couldn't be anymore ill fitting. Especially for the larger gentlemen in the group or those w/ "athletic" builds. They were tight in all the wrong places and the first time I bent down to initiate my crawl I was nearly cut in two by this wretched garment. Throughout the exercise there were more than a few giggles from the participants as we stood, with knuckles on parade, waiting for our turns to crawl. Rest assured I set the fashion bar high as I modified my "adult jumpsuit" as best I could. Popped collar, zipper halfway down (like Magnum P.I.), and pant legs fully stove-piped into the cowboy boots. I was one oily red shop rag hanging out of my back pocket away from flushing your radiator.

As mentioned all of this frivolity was in effort to give us an understanding of our hurt child's new home... the floor. I'll have to get into that thought in more detail when I'm not on this damn eastern time schedule. It sucks. You eat dinner, watch the news that starts at 11 pm and go to bed.

Random Thoughts from Day 2

2009-09-22T21:35:00.002-06:00

Here we are, the end of day 2 at "The Institutes" and we're still not sure what to think about this place. It is all very different from anything that Angel and I have ever experienced in the world of raising a kid with a hurt brain. This course has been as advertised; very strict, regimented and taken VERY seriously by everyone here. Everyone except Ang and I. We, up till now have remained cautious and somewhat skeptical. We are keeping an open mind and have every intention of giving this our best shot while trying to stay realistic. We are but 2 of 60 people in attendance here and I think we are the only ones not "drinking the kool-aid." There are folks from four continents, 11 countries and 18 states.

The course has several instructors who do a fine job and are all very organized. It was a surprise to us yesterday when we came in from one of our 10 min. breaks and found in the front of the auditorium a very old man with a white beard. It was Glen Doman, founder of the institutes. We read his book before coming and he wrote it so long ago we assumed he was dead. He's not, he's 90. It was obvious that he is a very bright man. He is a pioneer in the Physical therapy field for brain injured kids. And while there are many who don't agree with his methods, you can't deny that his methods have produced positive results. Needless to say we were all surprised to see him and hear him lecture as part of his course. The staff here is also loaded w/ extremely bright people from countries all over the world who also share Mr. Domans religious like zeal for the institutes and the program. Angel and I have, however come to the consensus that the folks at "What not to Wear" need to come and treat the staff here to a bit of there therapy. Most of the outfits and hairstyles are straight out of "Dynasty" and "The Love Boat."

We've had a few chances to get to know some of the other parents and their stories, which are all very sad yet inspiring. There is a couple from New Jersey who's daughter suffered from anoxia at birth and is now severely handicap and O2 dependent. There is a father here alone from Sweden who has a son w/ CP. A father from Pennsylvania who's wife took the course prior and has a 22 yr. old daughter that was struck by a car and now has the mental capacity of a 1 year old. Two sisters from Israel who have a niece w/ a rare genetic brain defect and they are here taking the course for the mother who doesn't speak english. Then there is Mr. Pope, Angel's favorite. When and if you see here you'll have to ask about him because writing about him will in no way do justice to the joy that he has given my sweet bride.

We have learned many things about the brain injured child and Charlie's condition. We did a detailed evaluation of Char and we are glad to report that Angel and I are the proud parents of 28 month old boy with the Neurological capacity of a 2 month old. Believe it or not this is a bit more advanced that we though he'd be. We also learned that his injury is now diagnosed as a "Profound Bilateral Difuse Midbrain and Cortical Brain Injury." Say that 10 times fast. Apparently this is common among the kids that are treated here at the institutes and many of them improve to varying degrees and some of them even get better, completely better.

Off to School

2009-09-19T23:44:00.003-06:00

I realize it's been an age since we last updated but I've procrastinated with good reason. One not much has changed in the day to day life of our little man and I just haven't wanted to. I told Char's mom that when something noteworthy occurred I'd gladly note it.

Currently we're on a flight to the Institute for the Achievement of Human Potential in Philadelphia. Angel discovered this place through the Menning family and after doing some research we decided that this joint might be able to help Charlie. You'll have to excuse me for being short and largely unfunny but just before we took off I received several texts letting me know about the blood-bath that was happening down in Provo. (Dave and Cam, thanks for keeping me in the loop.) If my name was Landon I wouldn't care that BYU was getting beat because our rival already lost but alas that is of no consolation to me.

Angel and I are scheduled to attend a parents conference at "The Institutes" that goes until Friday of this coming week. 50+ hours of lecture designed to educate/train the parents of brain-injured kids on new and progressive therapy options. Any of you who know the zeal I have for the classroom will also know that it will be nothing short of a modern day miracle if I make it to the end. We got the class sched. and syllabus for the week and HOLY SH!#. This stuff is scheduled to the minute. Class is from 9 am to 7:45 pm every day with a liberal 25 minute break for lunch. Below is just the first page of rules for the lectures. There are two more.

We encourage course participants to briefly step outside for fresh air

if weather permits.

1. Always be in your seat on time.

2. Stay in your assigned seat.

3. Do not stand up during a lecture.

4. Do not leave once a lecture begins.

5. If you are late, go to the sequestered area.

6. Do not smoke in the auditorium.

7. Do not bring food or drink into the auditorium.

8. Do not eat, drink, or chew things in the auditorium.

9. Do not sew or knit in the auditorium.

10. Do not operate a tape recorder during lectures.

11. Do not operate a paging device or cellular telephone

during lectures.

12. Do not interrupt the lecturer.

In essence, each parent should be careful to never create distractions

for other students or the lecturer. They will show you the same

consideration.

Each lecturer will focus his or her attention, interest, and concentration

on you. This is precisely what you should do for each lecturer.

Your help in keeping the lecture environment perfect will be a significant

contribution to the overall effectiveness of each lecture.

They also informed us the bring a coat, jacket or sweater because they keep their auditorium VERY cold. Apparently NASA did some studies and have found that humans learning ability is significantly improved when you're freezing your ass off. We both had to read this book "What to do about your brain injured child" and sign a affidavit dotted in blood swearing that we read it before we would be admitted to the class and Angel tells me the book makes sense. I don't really know what to expect with this place. In my mind I'm imagining a room of people in white coats, coke bottle glasses and tin-foil hats. I did look at a few of the brochures and did read some of the welcome packet but I'm afraid this Railroader might be in over his skis on this one.

We will try and update often this next week and let you know what we are learning (check that... what Angel is learning). We want to thank all of you for helping us with this trip. The Mom's and Sib's for taking care of our boys. And so many others for helping us afford it, esp. Randy (Bubba Jed) and Pam, Kent, The Colonel, Jimmy, Ogar, and B-Low for the buddy passes and Boomer for the accommodation hook-up.

Wish us luck!

PS. BYU SUCKS!

Sweet!

2009-08-12T21:59:00.002-06:00

How much better can you get than treating yourself to a Blizzard and having the money go to help Primary Children's Medical Center. I know what my family will be having for lunch AND dinner. Coop may even get his very own frozen treat. I think he likes OREO. We will be at the Centerville DQ because the owners are "super cool"! See you there!

Coop's 2 yr pictures

2009-07-06T11:21:00.006-06:00

Charlie's Aunt Susie and cousin Amanda took him on a photo shoot for his 2 year old pictures. They turned out so fantastic that I had to share them with you. The photographer is Amy Larson of clipsandclicks.com. I have had several people ask who took the big-eyed picture in the red sweater that used to be at the top of blog and sent them to her website. She is really patient, creative, talented and super sweet. She was able to capture all of his cute expressions that define his personality- the way he likes to chew on his binky, the big mouth-eyes closed smile, the way he always crosses his legs, purses his lips if he's a little mad and the full scream face. Last year at this time we only saw the sleeping face or the crying face so I'm so grateful for what this past year has brought us. I hope you enjoy a glimpse at all the Charlie Faces!

(Thanks Jen for the perfect blanket backdrop. I love it so much and still want to learn someday)

Who's Kidding Who?

2009-07-02T00:25:00.004-06:00

Hello friends of the worldwide web. Where have you been? It’s like you dropped off the face of the earth for awhile. Just so you know it’s really rude to not let us know how you’re doing. Selfish almost. I personally believe that as U.S. Americans you should update blogs more often so that people from the Iraq and such as can hear how you’re doing and so forth. (I love Miss Teen South Carolina!)

In thinking what to post about I had this idea to write first person as if I were Charlie and go through a-day-in-the-life of our favorite neuronally necrotic little boy. I did make an attempt, then read it and it was admittedly sub-par. Even w/ my arrogance I’ll gladly concede when I suck and ask that some degree of quarter be granted. I tell you this not as an excuse to my sloth but so you can respect that I do try and make this blog interesting and continually posting about the monotony of our lives is less than interesting. In my head it was a Pulitzer worthy idea but in reality there is nothing more myopic than tolerating misguided attempts at creativity from those who aren’t. Alas, I am not. I gave it my best effort but after all isn’t the true definition of ineptitude, how should I say this tactfully, when your very best just isn’t good enough?

So, where does this leave us…? I was hoping that the new pictures of Char would satiate you for a time but I was corrected straight away by my dear bride and informed that I will post something. Unfortunately for you, prepare yourselves for monotony. On a side note, I’ve just typed three paragraphs and not said anything of import. I’ll go ahead and pat myself on the back for that. And if you don’t know who Miss Teen South Carolina is go search youtube.

Charlie is still very much Charlie. His progress continues to be biblically slow but in contrast to a few months ago when it was stagnant if not regressive we’re quite pleased. The term "Charlie steps" is still most adequate. Angel and I notice small changes here and there but some folks who only see Char occasionally tell us that they see improvement. Now whether or not that is honesty or just the patronization of parents of the cerebrally bereft I don’t know, however I prefer to think it’s the prior. After all I am a Cougar fan and I’ve lived my life thinking that BYU is/was better than they are/were. In the last month or so Charlie has become markedly more active and aware. Keep in mind "Charlie steps," it’s not like he’s walking. He’s moving his limbs a lot more and is becoming more bilateral. Sometimes when you play with him it’s almost like he’ll grab at things. His vision has improved most of all. I really think that he’s recognizing faces. For instance; if you walk in the room and he’s lying on the bed he’ll move his eyes (both of them) to see who it is, and if it’s his dad he’ll let a big ole smile go. All in all he’s paying far more attention to his surroundings than ever before. Char is loving the outdoors and often a little time outside with the wind in his face will make this ire-some little man quite happy.

The best thing happened a couple of weeks ago that must be documented. Charlie got sick. We think but we’re not for sure. It might have been a touch of the flu or a cold but whatever it was, was heaven sent. Explanation to follow: For five days Char was calm, mellow, happy and most importantly content. His Rx’s were unchanged with the exception of his one of his reflux meds. It was bumped only slightly and had been so for a week before his blessed change in demeanor. Britton was sick and Char had a low-grade fever so we’re calling it a bug. Can I tell you how great it was to lay him down, use the restroom, and not have him SCREAMING when you came back? Or how nice it was, for five entire days, to hold him and not have him fight you while writhing in discomfort and contort himself into all types of unnatural positions. He took naps, sometimes two in a day! When he woke up he was calm, and stayed that way. He went to bed at a decent hour and slept past six a.m. He even made it in the car from Bountiful to Kaysville w/o making a peep. The best time of the entire five days was father’s day morning when Charlie gave me the very best gift a boy could give his old man. He slept in till 9:30 thus so did I! Manna from heaven. But like all good things, it has ended. Charlie is back to the foul mood that we’ve grown accustomed to. Maybe we haven’t become accustomed to it, we’ve just learned to tolerate it. He will have a good hour here and there but not nearly enough of them. Maybe we should invite the sickies over to play with Char and keep him in a marginal state of health thus moderating his temperament? Totally kidding… put the phone down… no need to get child protective services involved.

Anyway, I’m spent. The well is dry. If you want more info just come by and visit, and don’t worry about leaving your sick kids at home. All are welcome. We won’t even make you wash your hands. Again, kidding… hang up the phone. Talk to you in a month or two. Kidding. Maybe.

YES I'LL WRITE A NEW POST!

2009-06-29T23:44:00.001-06:00

It's coming... I promise.

We are the Champions, my friends...

2009-05-19T16:16:00.009-06:00

"It's easy to make a buck. It's a lot harder to make a difference" Tom Brokaw

What a great success Saturday turned out to be. I had semi-low expectations going in to this years race because Charlie first of all isn't critical and not much has changed and the newness of his injury has worn off. "Been there, done that, got the Charlie steps t-shirt to prove it". But much to my surprise the team kept growing and growing and GROWING. Up to the very last minute we had people registering to join our quest. Can I tell you my heart was about to burst as I heard how many were there for this adorable 2 year old. (He is cute isn't he?) Char was in such a great mood all day. I could not believe what a wonderful sight it was to see each of you- yes I mean YOU- loyal friends, lost-now-re-acquainted friends, hospital buddies, family, cousins (1st, 2nd, newly adopted or once removed), nurses, co-workers, therapists, neighbors, blog-stalkers, doctors. We love you all! You came out in force to support an organization that needs us and it feels ohhhhhh so good. WE did our part and WE made a difference. That feeling somehow makes you feel good to the core for a long time afterwards. Those of you that stayed for the raffle, i hope you won some great prizes and if you won the airline tickets- I'm your new best friend. The BIAU raised 10 times on the raffle then last year!

Our good friend Troy was "volun-told" to make another video for this year's race. I have collected some awesome pics from family and "the very nice person" (thanks a ton Ginny) but if you have any that you would be willing to contribute please cough them up. Also, if you have any suggestions for a background song, leave it in the comments and he will take it into consideration.

*Angel*

Thank you, thank you, thank you. All of you for supporting the Brain Injury run this year. I had a great time seeing all of you, which is somewhat of a surprise considering I really don’t like people. Even more so I don’t like large crowds of people. I don’t mean this to be rude but as a point of illustration many folks consider Disney Land the "Happiest Place on Earth." For me it’s more like hell on earth, too many humans in too small a place. Which is why the 5K the past two years has been marginally peculiar for me. I enjoyed myself, immensly, in a crowd, with lots of people. The big difference as best as I can fig’ur is that you all are really cool. A far cry from the booger eating mouth breathers you have to rub elbows with while waiting in line for "It’s a small world." You all are REALLY COOL. You all came out selflessly to support something that is very important to our family. That says a lot about what kind of people you are. My only regret I have is the same regret I had last year, I feel like I didn’t get the time to visit with you all. So, if Charlie and I didn’t get a chance to say hi and thanks come find us next year. I think part of it is my fault. Case in point: A totally nice gal and her kids came up to Charlie and me and asked if they could get a picture with Charlie, I said you bet. As I got talking with her she told me they had been at the race last year and didn’t dare talk to us because she was worried I’d make fun of her on the blog. I felt like a jerk. Let me assure you all the only people I’d make fun of on the blog are hippie looking male nurses with nappy beards and sunglasses from the 70’s, metallic knee’d cousin/uncles wearing construction vests trying to run so they could catch up with hot women, and diarrhea mouthed boyfriends of my nephew. As long as you don’t meet those qualifications you’re safe.
We had a great time and we hope you did too. Many sib’s and friends put in a bunch of work to make sure this years race was a success and to them I say thank you. Thank you to all those who sponsored the race and donated raffle prizes. All the money raised will go to a great cause. Some will go to helping those who have brain injuries and much of it will go to educating people so they won’t become brain injured. Brain injuries suck and while Charlie’s little noggin has been devistated we are glad that there are things like this race that help put a silver lining on his condition and make it a little easier to handle. We are very grateful and humbled by you all and you are all really cool people. I’d go to Disney World with you anytime.

Last Minute Info

2009-05-15T13:49:00.000-06:00

Hi All,

We are so excited to see you all bright and early Saturday morning for the BIAU 5K. We have been trying to decide what to do to unify Charlie's team this year... for those of you returning from last year, you are welcome to wear your "Charlie Steps" t-shirt (and you will be receiving a race shirt as well). Charlie's aunt Erin has purchased enough maroon bandannas for those people registered for the race. (Thanks Erin!) To get a bandanna, find Rob, Angel or Charlie at the park before it starts. Also, if you have children who are not registered, you are welcome to bring your own bandanna for them to wear if you want them to be involved too - but we only purchased enough for the official team registrants (so please only take as many as you registered for so everyone on Team Charlie can get one!). I think you can find them at party supply, craft or fabric stores.

Also, if you want to be involved in the donation drawing after the race, bring your dollars to buy tickets. $1/ticket. There are some seriously awesome prizes (we have 75 prizes so far!). The more you enter, the more likely you are to win.

Also, we just want to say thank you to all of you - for continuing to support Charlie Cooper and his family over the past year - at the race and in everything else you do for them. Your love and support really means so much to Rob & Angel (and the rest of us..).

See you in the morning!
-Meghan

About the bandanas...

2009-05-14T12:58:00.002-06:00

Just a quick note... we only ordered enough bandanas for those people registered on Charlie's Team. This means if you have children coming with you we do not have a bandana for them or any of the other non-runners, walkers, or rollers. In this case you would need to bring your own bandana for them to wear. I think you can find them at party supply, craft or fabric stores.

It Won't Hurt You.

2009-05-13T08:57:00.004-06:00

I’ve been ordered/asked nicely to post on the blog a short reminder about the Brain Injury 5k run, walk, roll this Saturday at Liberty Park. So here it is.

*DISCLAIMER* - the following will likely be dripping with sarcasm, cynicism and a modicum of derision.

BIAU 5K REMINDER

Get off your lazy cans and try rolling your sorry sack out’the bed early enough this Saturday so that you can get to Liberty park in time for 15th (or so) annual BIAU 5K Run, Walk, Roll. It kicks off at 0800 (I think) and I know there are plenty of you out there that don’t even know what the day looks like at 8 am so this will be especially neat for you. Now lets be honest here. Very few of you have the fit/trim athletic build that I’m blessed with so this won’t hurt you. Calories might just get burnt, you might even sweat. And if you can somehow motivate yourself to keep going after the first 10 feet, when your heart already feels like it’s going to explode, you might even finish. Or you might not. Then you’ll just have to accept the fact that your best effort just wasn’t good enough.

*DISCLAIMER* - the previous reminder had to be cut short before any more of you learned just what a ___________ (insert explicative) I am. Why is it that being negative comes so easy to me??? Bitterness + Negativity - Anything Constructive = Rob

In all reality and truth, we are very excited for the race this year. We know that it would be unrealistic to have the turnout that we did for last years race but we hope that all of you will make a concerted effort to attend and help a cause that is very important to us. This year we won’t have T-Shirts but one of my sisters (thanks Errrn) rounded up bandannas so that those of you who are coming to support Charlie can have a way of showing it. I’m told that I’ll have them with me and Char before the race so come and find us. And just a thought, you could always wear your Charlie shirt from last year?!? Also, we’d like to get another picture this year and in an attempt to actually start when we’re supposed to I’ve been told that we’ll take that pic at the finish line. (Although it was cool that there were so many of Charlie’s peeps that there wasn’t really any point in starting the race until he was good and ready!) That way we can have photographic evidence of the lather that you either did or didn’t work up. If you look great in a post race pic we’ll know that you are lazy and didn’t run or there is a rare chance that you share the same perfect genes as me and you can run for days, not sweat and never get your heart rate above 50 bpm. For an elite few of us having 4% body fat is the cross we have to bear.

SEE YOU THERE!!! You've now been REMINDED.

Happy to You!! Coop is 2!

2009-05-05T14:17:00.009-06:00

May 3rd was Char's birthday. We didn't do much being that it was Sunday and all but we will be having a celebration after the race on May 16th. So if you run in the race please feel free to join us to celebrate this great milestone with him.

Britt woke up and wanted everyone in our family to match with our Charlie shirts and jeans so we all did then got out of them to go to church then back in them to go to family dinner. Matching his little brother is one of Britt's favorite things, that and pushing his stroller/wheelchair. I hope he always that pround of his little bro.

Britt helped blow out the two candles and then shared some delicious cake with him. As you can see from Britt's own face, he doesn't have the greatest aim so Coop had a little too much shoved in at once. Good thing Aunt Suzie was there to zone in on the target. He also got hooked up with great gifts of essential items! Thanks everyone.

In the last week or so Coop has "not hated" (one step below saying he "likes" something- but huge step up from his usual grimmace) having tastes of food as he once did. Big step for us. I'm not sure why things have improved but I hope it's here to stay. Dr. Such-Neibar instructed us to give him strong flavors to wake up the tastebud instead of bland baby food. So we give him tastes of A1 sauce, marinara, Arby's sauce, salsa (he didn't care for this- I think he may be a "super taster" like his father), peach freezer jam (thanks Amanda), and Diet Coke. It's just what every toddler likes right?

Coop has hated the car for a year because it restricts him in a bent position instead of being arch backwards. Many times when we arrive at a destination 10 minutes away we will have to take off his clothes because he has sweat through them and it drives Rob nuts to hear him cry so much. So the best news of the week is that Rob discovered that he likes the sensation of wind blowing in his face and will often smile when he feels it. It only works for a few minutes but the important thing is that it works!!!

T-minus 1 month

2009-04-16T09:44:00.010-06:00

that's right folks. get out your running shoes - dust 'em off if you have to (hint, hint rob). pull out the Nike shorts and pump up the tires on the jogging stroller...
the Brain Injury 5K is 1 month from today!!

We REALLY want you all to join us (unless you are far more ambitious running the Ogden Marathon - but really, isn't this a better cause??). SO below are some (fairly) simply directions to register. We would love to have you register early so we can get good estimations for products needed at the race. Also, bring a few dollars with you this year for the raffle - We already have some great prizes including 2 Southwest Airline vouchers (thanks Ty!), various gift cards, hotel nights, and tickets to events around the city, and we plan to get more fun things over the next month.

Lastly, the race is still in need of sponsorship. If you or someone you know wants to sponsor and get your company logo on the shirt, you can do so for as little as $250! (and it's tax deductible). If you are interested, contact meghan or suz or leave a comment here and we'll get ahold of you.

We are all getting very excited for the race, especially Charlie. He has been working out, doing his exercises and plans to roll way more than the half lap he did last year (if we can find someone else to push him besides his dad with an "athletic" build)! He can't wait to see (but maybe not hear) some of the old friends he met last year at the race.

RACE REGISTRATION:
The on-line registration for the race is up and running. The registration will be done through Active.com this year so will need to create an account if you don't already have one. You can join the Taking Steps for Charlie Steps team by following this link http://www.active.com/page/Event_Details.htm?event_id=1717704&assetId=56718d1a-5018-4db7-bb63-40a9341a6818 and clicking on the register now button on the top right hand corner of the page. You will then need to click on "team registration", choose Charlie's team (there is not a password), and check all the boxes for the waivers and such.

The next page is all about your name, address, and shirt size. Ignore all the active.com stuff unless you really want to order a bunch of magazines. When you get to the question about how you found out about the race-click 'other' and fill in the blank.

The next page will process your payment and print your receipt and VOILA! You are done. if you prefer to register over the phone call 801-484-2240.

Can't wait to see you all in a month!!

Memoirs of a Runner

2009-03-23T02:53:00.006-06:00

Have you ever had a bowel movement so good that you think you might have felt the Spirit? Think about that for a minute. As a young boy growing up I never gave pooping much thought. That is until a Lake Powell trip, summer while in jr. high school.
The trips I took with the Chilton’s were all great with some of the fondest memories of my early life taking place down there. Skiing, zip-lines, nakedness, Joel using Troy’s head as a ramp, Nes refusing to jump, bottle rockets in the chest or moody girlfriends swimming to islands to pout and expecting us to come get them and um… not or any number of nefarious activities occurring on top of the houseboat. All really neat things that I am lucky to have experienced. But anytime the topic of proper bowel function comes up one Lake Powell memory comes raging in with such clarity its as if it were yesterday.
We had been on the houseboat for nearly a week and I was suffering from some faulty elimination. After my morning constitutional I came back from the hills and as I was walking back on the boat, Mark Chilton, father of my dear friend Troy, was adjusting the beach anchors and must have seen my obvious angst and just looked at me in the most matter of fact Mark Chilton way and said, "Rob, you should really go running." Perplexed I was. I mean Mark had told me some pretty weird stuff up to that point but this was something I just couldn’t get my head around. I wasn’t nearly as rotund as you might find me now so I know he wasn’t recommending a fitness regimen, it must have just been that obvious I was in a bad way, or was Troy’s dad just bat-sh** crazy.?.? I asked him as politely as I could what in THE hell he was talking about and he informed me that after a really good run you were almost always guaranteed a great movement. I believe the exact word he used to describe it was "Effortless." There was a little more to the conversation but you have enough information for me to make my point. So here it is…
Who took Charlie running? Our little man hadn’t made any type of fecal deposit in 5 days and was growing increasingly irritable and then yesterday, after one of you people broke into my house stole my smushy brained son and took him out for a nice long run he started a marathon of his own. He’s been pooping regularly for over 24 hrs now, 5 movements all included. While that is nothing but a normal day for some of you folks, it is Herculean by Charlie standards. The best part is that his temperament has been completely pleasant. Case in point; this morning after discharge numero tres he just laid in bed so content, so relaxed I almost felt like I should have gotten him a cigarette. Today has been great for Charlie and he needed it. He needed a little R&R and so did his mom. I just wish I could ask him if it has been "Effortless" like Mark promised it would be.
This also brings me to the subject of the BIAU 5K Run, Walk, Roll. We can’t wait to see you all there and we hope you will all bring a friend. And if you run fast enough I’ll guarantee you an "Effortless" finish so leave the Metamucil at home. It should be better than last year thanks in part to some fine work being done by my sibs who are helping organize the event. If you’d like to help volunteer or donate anything just leave a comment here and one of them will contact you.

P.S. Angel is working on a photo entry of a day in the life of Charlie so we should all start getting really excited for that. Yeah Angel!!!

P.S.S. If I’ve offended or disgusted anyone in the writing of this post you must have never had issue with your digestive system and it probably functions so well you don’t even need toilet paper and rather than apologize to you, you can take comfort knowing there are many out there who envy your function.

Pass it On

2009-03-10T07:49:00.010-06:00

Dear Family & Friends,

I know this looks a bit long (cuz it is), but please take a few minutes and read... Many of you participated in the Brain Injury Association of Utah's 5K Run, Walk and Roll last year. We know most of you came in support of Charlie Cooper and we hope you will be able to join the race again this year on May 16th at Liberty Park. I am writing to not only let you know about the race, but also to ask for your support. The BIAU is a very small non-profit organization that struggles for funding. Of course, this organization is newly important to many of us, so we are asking for your help to find people, corporations or organizations who would be able to help support the association as well. The race provides the funding for the association as well as important education about brain injury prevention with a program called Head Smart in local elementary schools. While Charlie's brain injury was unpreventable, many are.

Did you know:
*Every 23 seconds, one person in the U.S. sustains a brain injury
One death every day and one brain injury every four minutes can be prevented by the use of helmets in recreational activities, including skiing and biking.
*1 million children sustain brain injuries every year ranging from mild to severe, with approximately one-third of all pediatric injury cases are related to brain injury. This public health concern ranks as the leading cause of death and disability in children and adolescents in the United States.
*The estimated lifetime cost for each survivor of a severe brain injury exceeds $4 million.
(for more really fun facts, check out their webpage at http://www.biau.org/facts/facts.html)

Because the Run, Walk & Roll 5K doesn't get the exposure that bigger races like the Race for the Cure or the MS bike race gets, it will take a fair amount of work so we are asking for your help. We all know people who might be able to help in many ways, so we are requesting that you consider who you could contact to help in the following ways:

*Corporate Sponsorship - Attached (obviously not attached, but if you are interested, leave a comment and i can get it to you) is a document with the corporate sponsor levels. Sponsorship is as little as $100 and up to $5000. Please look at the form and what the levels include. If you know someone you think could be a potential sponsor, please pass this form along to them. It can be great marketing for their organization. Of course this sponsorship is tax deductable. If you would prefer, you can also send me their contact information and I will send them the forms directly.

*Donations -
-- Cash - those interested can donate via the sponsorship form. Again, donations are tax deductible.
-- In-kind contributions - this can be something for the silent auction or raffle. This could also include product to be used at the race (ie. bulk food items, water, sports drinks, etc)

*Auction Request - I have included a sheet (again, contact me for sheet) requesting items from local companies for auction. You can take this form to your favorite restaurant, spa, ice cream store, etc and ask for items for auction. I assure you, these companies love to donate things for events like this because it is great advertising which costs them very little. My hotel loves to donate a free room night because its good cheap marketing.

*Time - The race itself takes a lot of work to put on. If you would like to volunteer before or on race day, let us know and we can discuss where you can help out with your time. Think about the people you know, and usually many have something to offer...

We are not asking you to go beg for items or money, but we want this association to become more widely recognized. We understand the economic situation people are in right now, but know that non-profits are struggling too, and this is so important to us. Please feel free to contact any of us with questions or suggestions. We appreciate your time and support.

Best, Meghan, Susan & Jared (charlie's aunties and uncle on the BIAU committee)

To view the incredible pictures of last year's race click here and here . Then wipe your eyes, and then register yourself and all your family for this year!!!

Smile: Found

2009-02-20T23:49:00.003-07:00

I loved these pictures so much I had to steal them from Charlie's aunt Susie. I've never been able to catch this "cheeser"

Update: We tried increasing his reflux med for a few days with no change in his demeaner and then increased Neurontin and he has improved. Hurray!!! He still prefers to be in someone's arms (but who doesn't) but he will lay by himself for up to 15 minutes and even is taking a nap. Thanks for everyone's concern and prayers. Let's hope it keeps improving.

Hell Hath No Fury Like a Fired Up Char!

2009-02-14T01:15:00.003-07:00

I’ve been order to update this blog and since the order’er is one who controls my carnal proprieties I’ll comply. That and I guess it’s my turn. It seems like I haven’t done this forever and to be honest I’ve procrastinated because I fear that if I get going the update will just turn into a giant rant with an air of negativity that doesn’t belong here.

Charlie had a visit with his Rehab Doc., Terry S-N. What a gal and what a great physician. We were really looking forward to this visit because Charlie has not been a very good boy lately. You know what? I’m not going to sugar coat this… the past few months have sucked! We don’t know for sure what started it, but our best guess is that when we changed some of Char’s meds his system and damaged little noodle were less than pleased and expressed their disapproval by turning my sweet little man into an inconsolable demon offspring of Hades’. Now if you’re saying to yourself, "Man Charlie’s dad is a real jerk, doesn’t he know that he has a brain injury and can’t help it?!?!" Let me be the first to assure you that the import of my son’s condition is etched so piquantly* in my little noodle that not a second passes where it’s not my most keen concern. Any of you close to Charlie please feel free to utilize the comment section to offer you endorsement of our hero’s recent demeanor. Granted I have been known to spin a decent yarn from time to time, but not even I can embellish the substantiality of having to hold and coddle your child for 16 hours a day, 7 days a week because if you lay him down for more than 11 seconds (we counted) he instantly combusts into a frothing hyper-tonic piece of pissed off dude. After about 60 seconds he’s sweating like a fat man at a free dance and the screams go silent because he can no longer draw air all the while his mood grows more vehement every moment. The poor kid got kicked out of therapy! Now how bad is it for you when you become so un-fun that therapists, the most patient people on earth, say "I think we need to take a couple of months off and see if you can get him mellowed out." Poor deaf brain damaged lazy eyed drooling therapy dropout. I guess it’s good Charlie has no idea about self-esteem, cause I don’t think you can give Prozac through a G-tube. During our first experiences with this new mood we thought that we could just put him in his bed and he’d tire and exhaust himself and eventually fall asleep. We let him go one night to see how long he could keep it up and after about an hour and a half he was sweating so profusely that dehydration became a real concern and I succumbed and parented again. This may sound insensitive but I now know why parents shake their kids. I say that only as a point of emphasis and I assure you Charlie has not been shaken and should anyone try they will find me sideways of them. Again, if you don’t believe me just ask someone who isn’t full of it, i.e. my wife. Or I could just set Char down, wait 11 seconds, take some video and post it here. You let me know.

Luckily, his ire has receded in the last week and with the light and knowledge received from Dr. Terry we have hope. Angel has been given certain latitudes to liberally alter medication at her discretion with the goal of long-term placation. Cross your fingers as we try and walk the fine medicinal line of well-tempered vs. well-doped. I guess if you want the nitty gritty details you can call Angel and talk to her. She’s way better with that kind of stuff. It’s better for all of us if we leave the details to her and the bloviating to me. I’ve just never been that into knowing when he had his last suppository or if his meds changed from 1.33 ml. to 1.5 ml. Sorry.

So the 5k is coming up and we’re all excited to see you again. We hope you can come! My sibs have been put on the committee and I’m told that with Meg’s degree in party planning and Suz’s OCD things will run ultra smooth. Tell your friends and just know that if you don’t show up and I think that you should have, you better have an awesome excuse like your preggo and about to calf out, like Sport. Or the next time we see you Charlie will give you the stink eye (with his good/straight eye) and cry because he thinks you don’t love him. How’s that for guilt?

*(meggie/whit, adv. –sharp/stinging)

Save the Date

2009-02-11T22:55:00.004-07:00

Brain Injury Association of Utah

5K Run, Walk & Roll 2009
When: May 16, 2009

Where: Liberty Park, Salt Lake City, Utah

For Sponsorship or Registration information please call the Brain Injury office at

801-484-2240 or 800-281-8442 or click here

Charlie would love to show everyone his SMILE. (I think he found it)

Where has the year gone?

2009-01-27T13:51:00.000-07:00

One year ago today our lives change and we started this crazy journey. Honestly, I thought/hoped Coop would have improved more by now but I have to remember his improvements are measured on a completely different scale than mine. I can't begin to express how our lives have changed over the last year both on the outside with our daily routine of therapy, medicine, constant comforting, worrying but mostly on the inside. Our focus has turned from the here and now to a eternal perspective. I'm learning (forced) to slow down and analyze what is really important and enjoy the good things. Although sometimes all I can do is get through the present week, day, minute or even seconds, those seconds mean so much more to me-because we came close to not having them. I am so grateful that I can watch each improvement happen even if I feel like we are on super-slow motion. He is such a blessing in our life and I love him so much. Thank you to everyone for your kind words, prayers, service, donations over the past year. You have been answers to so many prayers. Thank you.

This is a family assignment Charlie had for 2008- Rob thought I should include it...

Things I’ve (Re)Learned This Year –
Charlie Cooper- age 20 months
I re-learned how to see and to recognize what I’m seeing. I am also working on re-learning how to move my eyes together and to the left. It’s sort of difficult.
I’ve learned that you can reach decibels never before known and it doesn’t even have to hurt your own ears.
I re-learned to lift my head to the right.
I learned to work hard because the littlest things can be really difficult.
I re-learned how to swallow and gag so now I get to taste some food.
I learned how to be heard not just seen.
I learned how to get my way and be held as often as possible.
I learned how many people love me.
I learned to inspire people without saying a word.
I learned I am a small and simple thing but I can make great things happen.
I re-learned to relax (my hands at least).
I learned to have great diaper blowouts.
I learned just how much my dad loves me by making him consider things he never would before (give suppositories, consider buying a van)
I have learned that happy hour is at 10pm not 5pm.
I learned to bite hard if something is in your mouth.
I learned that with a crooked smile you can melt anyone’s heart.
I learned to talk to the Angels.

It's Been a While

2009-01-20T21:43:00.005-07:00

Not because nothing has been going on but because we haven't had very much time to post. Coop has not been behaving over the last couple months and has become very high mainentence. Since staying in the hospital, his sodium has come back down to normal levels but the agitation has remained and has slowly gotten worse. He is now calmed the most by being held and cradled. When he isn't held, he get extemely tense and arches like he did when he was in the hospital and immediately starts sweating beads- like he is going through menopause. Our pediatritian checked him and couldn't come up with anything definitive that could cause discomfort so we are to see Dr. Such-Neibar to adjust medication. We have several theories but can't choose just one (teeth, medication change, brain recovery, constipation problems...) Due to his new temperment he has been kicked out of therapy until he can "find his smile". A problem his big brother often has. We have been very lucky, however, that Char has had few cold/viruses this winter to complicate the tricky diagnosis.

This is how he is the most comfortable-arched backwards- Notice he is sound asleep

The only pics from his hospital stay- I'm out of the habit

Reunion with his "Hog Doc"- He misses you

A Smile for Neale- we don't get as many anymore

Goodbye 2008 - Hello 2009!

2009-01-01T01:03:00.004-07:00

Charlie wishes you all a happy new year - 2009!

We know, because he rang in the new year with more sweet, sweet smiles - the kind we saw last year at this time - than many of us have seen in a very long time. I only caught a few in this video, but it was awesome and just reminded us that he is in there just peeking out sometimes... It has been one heck of a roller coaster year, and we are all looking forward to 2009 to see how Charlie surprises us... hopefully with many, many Charlie steps.

ps. Charlie wants his momma to know he misses her and hopes she has lots of fun the next few days - he thinks she sure deserves a little break. and that his daddy is doing a pretty good job taking care of him. ;)
-aunt meggie

Pass the Salt...

2008-12-14T15:41:00.002-07:00

We're in the Hospital again and not a bit happy about it. Hypernatremia is the diagnosis and sadly enough it's my fault. We've been adding NaCl to his diet per the Nutritionist in order to supplement his diluted formula. Too much salt we've learned that its a bad thing and 2 kids in the last 6 mos. have died from this same diagnosis. Tim, the most brilliant RN in all of the land explained it to me on a Railroaders level and said its like putting salt on a snail and watching it shrivel up. Too much in your blood and your cells shrivel up. The last few weeks Charlie has been pretty irritable, i believe the medical term is "Pissed off" and it got so bad that about 10 days ago Angel took him to the E.R. thinking it might be a shunt problem. It wasn't and they sent him home thinking it was orneriness related to teething. So he had another temperment change late Saturday night ran a slight fever and got uber lethargic. Eerily similar to the way he looked when he first got sick back in January. Called the Pediatrician and he told us to head to PCMC. 8 hours in the E.R. and they admitted us. Last night was rough for Charlie and very uncomfortable. His mom, who may be the greatest most hottest hotty in the world, was the only medicine that worked for our little man. She stayed up and held him all night in the most uncomfortable chair in the entire hospital.
Today he has done much better and the Sodium has come down and we should go home in the morning. It's been pretty weird to be back in here but it's been good to see some old faces and not so good to see others (Duzy). We are so thankful for all of you and wish you a very happy and healthy holiday season.

Give Thanks

2008-11-27T21:16:00.001-07:00

Happy Thanksgiving from Charlie in St. George. We are thankful for many things this year, but mostly that Charlie is still here, still strong, and taking Charlie steps. A pal put this video together to help Charlie give a talk in church, and we thought thanksgiving was a good time for us to share it. We also want to thank all of you for your friendship and everything else the past year. We are thankful you are in our lives.

Manly News

2008-11-02T21:41:00.004-07:00

Update, update, update. First let me apologize for being so dilatory regarding this blog but I am not w/o reason. Reasons I won’t bore you with other than to say it is in large part because of the lamentable depression I’ve been suffering through brought on by the lackluster performance of the Cougars of Brigham Young. Now if you say, "Why would you be depressed they’re 8-1?" I would tell you that you’ve missed the boat and don’t understand. The reason for the depression, depression that is so debilitating the last thing you feel like doing is blogging, is because the charade of a team that is BYU, is on Nov. 22nd going to be taken out behind the woodshed and turned into humble little prison inmates. My prediction: BYU 6, yewts 91. With that knowledge and my superior prognostication skills how do you expect me to get motivated about anything? some of you might tell me to get a life. i’d tell you that i have a life and cougar football is it. so just hush. we all pick our poison and this year mine will be coming in a cup that i might ask someone to take from me.

I’m not quite sure how to quantify the changes in Charlie’s world so I think it will best serve you all if I take a minute and give you a detail-less update that will make you wish Angel wrote this.

With all this ATCH that Charlie has been getting to help w/ his spasms we’ve introduce a unusual amount of steroids/hormones into this little boys system and now we are seeing the uber early effects of puberty. Acne, irritability, defiance and hair. Yes hair, Char’s nether regions have grown a light coif. We’re not talking about a Hendrix like fro but definitely more than your average yoot fan. Sorry if this is too much info but after a situation/sickness like this you kiss all dignity and self respect good bye and besides some of you are sicko’s and I know you’d want to know such tid-bits about Charlie’s bits. Along with a touch of fuzz on the apricots he’s had some zits worthy of Guinness recognition. Zits have been the biggest problem while being on the ATCH. Why is that a problem? Well, because I’m his father. My name is Rob and I’m addicted to zit popping. (This is when you all say, "We love you Rob.") Angel hinted to my fixation in an earlier post and she felt like I should illustrate what she was implying. Since I was but a lad experiencing the awkward changes of adolescence I immediately took a keen interest in the pizza that my face was turning into. It was like cocaine for me, it took one pop, one extrication of those poor papules and I was hooked. Bravely I have managed my addiction for many years using the faces of nieces, nephews, sibs or really anyone who will let me pick to get my fix and then the Almighty curses Charlie w/ some of the juiciest most bestest acne I’ve ever seen. I was like a tweaker, waiting till we were alone and it was heaven, an oozing and squirting little heaven. Now there are no scars, infections or anything of the sort. I am a professional and I’d happily offer my services to any in need. Lucky for Charlie we are done with the shots and the blemishes are clearing as rapidly as they came. Boo.

Charlie is smiling more and more every day. Mostly when he wakes up and mostly w/ me which is no surprise as he prefers me to any other. He’s so cute and it’s intensely rewarding for us to know that he is responding to something we’re doing and it’s not just random. The light is on in his little head, albeit dim but what do you expect, have you met his father. Dim = Rob.

Today Paula, the Hearing Therapist from the School of the Deaf and Blind came over to give us a deaf/blind simulation so we could put ourselves in Charlie’s shoes for a minute. It was one of the most surreal experiences I’ve had in my life. I don’t want to give many details largely because details boor me and also we plan on having some of you who are close to Char go through it yourself. What an eye opener it was and it’s changed for the better how I will, from here on out, deal with and treat Charlie.

On a crappy note Charlie has started having seizures again. Now these are different than the spasms that we were taking the ATCH for. The spasms are gone and now he’s started some of the "normal" seizures. We’ve been weaning him off of the Phenobarbital so that we can transition him to a different more maintenance friendly seizure drug and we believe that is the catalyst for this recent neuronal paroxysm. All in all things are looking up for the little man but in reality he’s not so little anymore. He’s become slightly rotund and only weighs 8 lbs less than his older brother. Rotund = Rob

Charlie’s best days are ahead of him and it has been so fun to see him progress as he continues to take his "Charlie Steps." He’s working so hard to get better. Whether its in physical therapy or learning to like his stander we’re pretty proud of him. Actually I think he’s working hardest to stay deaf while watching BYU games w/ the old man where the only thing bluer than our shirts is the language. We don’t know if the cochlear implant works or not but just in case it gets turned off at kick off.

Thanks Aimee

2008-10-19T14:36:00.003-06:00

Thank you all for sending us your letters and we promise that we'll post them all but I tend to procrastinate more than most. I'm putting them up in the order we received them and this next one has a great story. Even if you've read it before read it again. We're loving our trip to Holland!

Dear Rob and Angel,

You invited people who care about Charlie to email their thoughts. I had been bouncing back and forth for a long time to send you this or not. But since you have invited, here it goes. The reason why I was so hesitant is simply you don't know me. I didn't want to seem intrusive on your family's life. So you have some connection to who I am, I am Doug Benson's cousin. I have a daughter just about Charlie's age.

Charlie's story has had a great impact on me. I've spent nights bawling at the computer screen, my heart going out to you. I don't check the blog near as often now, only every 6 weeks or so. Once I showed my mom your blog and she started crying too. See, it hits so close to home. My sister was born with mental/physical disabilities associated with microcephaly. And your story brought back so many memories, the J-Peg, the not knowing how much of her surroundings she could take in, the tumbleform chair, the wheelchairs, the times when you know she recognized you somewhere deep in her.

You may have already received this story from someone else, but if not, enjoy! I think of this poem every time I read your blog. My mom received it sometime after my sister was born, and I remember her passing it along to others in similar situations.

Welcome To Holland
by
Emily Perl Kingsley
c1987 by Emily Perl Kingsley. All rights reserved.

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."
And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.
But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

- - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - -

Through time, the blessings out way the strife. I feel I am really inadequate to speak about this since I was never the parent, only the sibling. I probably don't know a quarter of what this really entails, but I do recognize the affect it has on you, your family, and all those around you. My prayers are always with you. (Attached is a picture of my sister and I. I tried to find one with our brother too, but simply couldn't find the one I was looking for).

~Aimee Marble
--
http://marblejam.blogspot.com

1/2 Smiles :)

2008-10-13T21:14:00.004-06:00

Charlie definitely isn't looking his photographic best these days due to the steroid chubby cheeks and the facial rash and the wandering right eye. However, I had to share the "pleasant expression" that we started seeing yesterday. It's hard to call it a smile because it isn't one yet. The corners of his mouth moved back slightly but do not turn up. My mom was the first to provoke it Sunday afternoon with some "coochie, coochie, coos"- then I was able to get the same reaction last night with some "ahhhhhhh- boo's!" Now remember he is deaf (cochlear implant will be reprogrammed at the end of the month) so it is all about the exaggerated facial expressions not the words. SO what's the big deal you say....he has smiled in his sleep a few times before (really cute, mouth turned up smiles). Well... the big deal is that he reacted positively to something WE did. Up until now we have rated his mood by the absence of things like whining or stiffness. Although sporadic, it's very exciting- maybe all the binky sucking has given his mouth muscles a workout.

Sunday Afternoon

2008-10-12T15:22:00.004-06:00

About 3 weeks ago Charlie started getting a rash. First just a few pimple looking bumps on his chin. Then it spread to each side of his nostrils and a couple days later to under his eyebrows. Every few days it seemed to have spread just a little- inside his ears, on his forehead. It is only on his face and only in certain parts of the face but it is taking all of Rob's will power not to pop them. (It's a strange Christensen tradition to pop each others zits at family gatherings. Some actually refrain from popping them themselves to have their siblings do it at Sunday dinner.) Our pediatrician was not nervous about the rash because Coop seemed to be fine otherwise but then his blood pressure started to go up as well so I called the neurologist as instructed. He was concerned about the BP and thought the rash could be from the ACTH (seizure shots) as well. The rash he said should go away when we are done with the shots but the blood pressure is concerning so he asked us to get a manual blood pressure as the automated machines tend to run a little high. After a failed attempt at Instacare we went to PCMC and it was in fact high so we are weening quicker than originally planned hoping the BP will come down and that the seizures will not return.

He has been doing a little better in therapy. He seems to tolerate bearing weight in his arms and shoulders better than before and he is alert a lot more often. He is only taking one nap a day and the rest of the time is softly moaning. He is now moving his arms up to his face by himself and can sometimes hold his binky in if he hits it just right. (not on purpose yet). He has had a cold for a couple weeks and is having trouble getting rid of it completely due to his decreased immune system so we haven't been feeding him much baby food as he is coughing more. He is liking his binky a lot and kept in in himself for 3 hours on Sunday. This is a new trick for him and we are pretty proud.

It Worked :>

2008-09-24T22:35:00.006-06:00

I did another EEG last night after Britt went to bed and it looked much better. We went to see Fran Filloux today at 3:30 and told him I had not seen the left sided jerking in over a week and felt like the medication has helped. When he compared the EEGs he agreed and was very pleased it had worked so quickly. Protocol for this medication is to stay on the effective dose for 2 weeks after the seizures stop then start to slowly taper off the medicine. If the seizures come back we go up to the last dose that was effective and stay there for two weeks then start to ween off again. He said that there is a 50% chance of this happening. So since I estimated that I hadn't seen a seizure for over a week, he wants Coop to stay on the full dose for 5 more days before decreasing it. It will take almost a month before we are completely done with the shots. His bloodwork was normal and his blood pressure has stayed within the acceptable range for this type of medicine. Dr. Filloux said that Coop will slowly grow into his extra weight and chubby cheeks, he won't just loose it after stopping the medicine. But, if it worked that easily and chubbiness is the only side effect then I can't complain. I commented to the doctor that this was the first thing with Charlie that has been straight forward and he said "that's what I'm worried about." SO keep your fingers crossed that we are on the downhill.

And he also wants us to start decreasing his other seizure medicine (phenobarbital)!!!

2008-09-23T08:21:00.002-06:00

Things are pretty busy around here but we are content. The seizures seem to have decreased in intensity and frequency with the ACTH shots. I'm going to do another EEG tonight so when he sees Dr. Filloux (neurology) tomorrow we can make some decisions. The original plan was to stay on the ACTH until the seizures were gone and then taper off slowly for 6 weeks. I don't think they are completely gone so he may want us to continue on the current dose or increase a little before we start coming down. I think it's been easier to give him the shots knowing that he is improving some. He no longer does the left sided jerking that we videoed but he still wakes up and startles where both hands jerk up a little then relax.

Britt has had a cold for a week and because Charlie's immune system is depressed he got it too. His cry sounds hoarse, stuffy nose and goopy eye and he wants to be held a lot. He isn't interested in doing his exercises or swallowing his tastes of baby food. I can't blame him with a sore throat. I am impressed that he is able to cough and keep the gunk out of his lungs so far. :) When we left the hospital that was one of my biggest concerns.

Before he got sick this week he was doing great in therapy. He was starting to lift his head while on his tummy and didn't hate bearing weight on his arms. Big improvement in my eyes!

A Must Read Story.

2008-09-19T10:05:00.004-06:00

WOW!  Read this and don't skip a line.  Connie works with Charlie's
Grandma Cheryl and we can't thank her enough for taking the time to
share this w/ us.


Charlie is such a great inspiration to me.  It is uncanny the effect he
has had on my life and the strength that I have gained from your family.
I have followed Charlie's story since he first became ill.  What a
privilege it was to work with Grandma Cheryl .  She has been so patient
to keep me informed and to invite me to visit Charlie in his home.  I
LOVED holding sweet Charlie and feeling something so special about his
strong spirit.  I came away from that experience filled with so much
faith and such a feeling of peace. It is difficult to explain. I have
kept his bracelet close by ever since Grandma Cheryl shared one with me.
I continually pray for him and all those who help care for him.   I am
so grateful that you are willing to share your story and lives with all
of us!

This summer I spent five weeks teaching English in Vietnam.  I was a
bit nervous and I wore Charlie's bracelet every day.  There were many
long days that I needed to be reminded to take "Charlie Steps".  Many
people asked me about the bracelet and I shared Charlie's story with
many people.  Everyone that heard the story was touched and wanted to
know more about this little boy. They were all stunned at the strength
your family possesses.

I have taught in China for several years and I was anxious to go back
and help where the devastating earthquake hit earlier this summer in
Chengdu.  I have many friends there and I know that they have suffered a
great deal.  I spent six days in a remote village working with the
Chinese Red Cross doing relief work with many of the victims.  The
school that I had taught at was totally demolished and many friends were
killed.  I lived in a tent with a family that I was close to several
years ago. They lost two children when the school collapsed as well as
their house and everything they owned.  I cannot imagine that kind of
total loss.  I was overwhelmed at the devastation I saw. They are such
humble people and willing to accept what has happened to them.  They
invited me to share everything they had. We worked together cleaning up
and building some new homes around the collapsed school.  I found such
strength as I looked at my wrist and thought of Charlie and his
strength.   My friends asked about the bracelet and I told them the
story. We spent several hours talking about life and our attitudes about
facing adversity.  The mother, Thien Ann, was moved to tears as we
talked and shared a very spiritual time in that little tent.  The night
was stifling hot, but we sat close and shared our tears and our hope for
the future. As I prepared to leave and fly back to my comfortable home,
I gave Charlie's bracelet to Thien Ann.  She sobbed as she accepted my
simple gift and asked me to tell you that she understands heartache and
she hopes you will all find peace in your heart as Charlie continues to
teach all of us. She wanted me to be sure to tell you about her love for
the lessons of "Charlie Steps" and that she will always think of you and
your strength.  I left her with a hug and my promise to pass along her
empathy and admiration for all of you.

All of your family continues to bless our lives.  You have inspired
people around the world with Charlie's story.  I am overwhelmed at the
great blessings I enjoy and so often take for granted.  I have committed
to be more full of gratitude and to share my blessings with others who
need help.  I know your "Gammy" is proud of you.  She was quite a lady.

Thank you for the new bracelets.  I treasure them.  I am truly grateful
for the opportunity I have had to get to know you. Your  faith and
strength is an inspiration to all of us. May Heavenly Father continue to
watch over you and wrap you in His arms when you need comfort.

Sincerely,
Connie

Another Story

2008-09-14T19:26:00.005-06:00

Its been awhile since we posted a letter from you all and I apologize. Many of you have been so great in telling us your Charlie story. We'll try and be more diligent and post these stories more frequently.
Oh, I almost forgot... BYU - 59 Ucla - 0

Hello,
I started reading Charlie’s blog when my daughter Emma was also diagnosed with meningitis (on the same day as Charlie, I think). I used to read it from the PICU and prayed for Charlie as I prayed for my own daughter. My daughter’s bacteria was different than Charlie’s, and probably not as aggressive. Also, because she was only two months old, even the low fever she had was cause for an immediate spinal tap. The doctors believe they caught my daughter’s meningitis in the first 12 hours and with aggressive antibiotics, she made it through with no repercussions. Since then I have kept checking in on Charlie’s progress and every time I am so delighted to see how your family has rallied to help with Charlie and how you and your wife have such a positive outlook. I remember seeing pictures from the hospital days and thinking you guys were so amazing for keeping it together and I know that God is your “glue”. Charlie couldn’t’ have been born into a better home, with better parents or a better family. He chose you.
Please know that one family of strangers in Miami thinks you guys are heroes, all of you!

Much love,

Adela

Ps. Attached is a picture of Emma, with her big sister Stella

Quick Update

2008-09-06T23:03:00.003-06:00

Way to go UTES!

I had to get that in before Rob reads this.

It has been one week since we started the ACTH therapy so I thought I would let you know how it's been going so far. He does pretty well with getting the shots even though the medication is extremely thick and takes a while to inject it into his thigh.

Last Saturday (day 1) was pretty bad. His seizures were getting more frequent, more intense and lasting longer. As the week progressed he was still having more seizures but he also was extremely stiff. He would wake up in the morning with his arms fisted and straight up towards the ceiling. His head also took a lot of pressure in order to turn it to the middle and he would scream when he did therapy. Wednesday I increased his Baclofen (muscle relaxer) to the limit the doctor had allowed me and he has improved some. By Friday I think the seizures have improved some although he has started to get more angry. His blood pressure has remained low and I haven't seen any water retention :) He gets his blood checked in one more week to check for liver and kidney problems.

Update Finally!!!

2008-08-31T21:30:00.008-06:00

I haven't forgotten about blogging but Charlie has been confusing me for the last couple weeks. He hasn't been progressing very well but nothing specific enough to put into print. His effort, connection, agitation, and stiffness varied day to day and even hour to hour. Something wasn't right but it was so variable I had a hard time describing it.

3 weeks ago Charlie started jerking around 10pm. This was consistent. He falls asleep at 8 and then would wake up sometime between 10 and 11 and starts jerking. I've written before about how this time we felt Charlie connected with us but now he was waking up and do funny movements. Typially he is throwing his arms up and to the side, his head to the left (opposite than the normal positioning) and pursing his lips for a second then relax back for a few seconds only to do the jerking again. At first he would do this 15-20 times then stop and fall back asleep. In between the jerks he would move like normal and his eyes even would follow movement. This pattern continued mostly every night so the Dr. I work for let me take the old EEG machine home to do an EEG. I didn't start until 10:00p so Britton wouldn't mess up the electrodes and ended up recording until 2a. I recorded a long time so I could make sure to get the jerking on record. It looked like he was having seizure ..... even for the 2-3 hours before he was jerking. SO the next morning I called the neurologist who had seen us in the hospital. After getting a little bit of the run around from the neurologists office we tried Phenobarbital from 17.5 to 20. We did this for a week and it didn't seem to help. He then started doing this jerking occasionally throughout the day, usually after he wakes up and his chin started twitching. We drew his blood and he was as high as he can go on Phenobarbitol medication without causing problems. Dr. Filloux worked Char in early Wednesday morning and he spent over an hour with us getting everything figured out. I showed him the seizures I had videoed and the EEG I had recorded. I figured he would say that Charlie was having breakthrough seizures and that we would try changing his medication. It was somewhat true...He believes that Charlie has Infantile Spasms. These usually occur in children under the age of 1 and are a type of seizure that typically happens upon awakening from sleep. They jerk and then relax several times. Read here or here for more info. The video below is what I showed the Dr.. I'm not sure how to cut the video so it's sort of a lot of the same thing.

I've read that there is a decline in the children's progression due to the infantile spasms. The therapists and I had been noticing this over the past couple weeks with Charlie. He had shown glimpses of better head control, purposeful movements and tolerance for therapy but all of this had either plateaued or declined recently.

The treatment the Doctor recommended was ACTH which is a hormone that increases the body's production of steroids. It usually stops the infantile spasms if the child is an infant but has a lesser chance the older they get. Dr. Filloux and I decided that we would try this more aggressive therapy despite the side-effects. If it doesn't work then we will try different seizure meds.
Things Dr. Filloux told me about ACTH
* It is an injection that I will need to give him daily for at least 6 weeks (probably more like 8-10) into a muscle.
* It costs $29,000 for a 30 day supply. Where do I sign up to sell hormones for that much profit? I'm so grateful we have insurance!
* We will know in about 2 weeks if it works or not. It is usually all or nothing. If it isn't working we will will try an increased dose once and if it still doesn't work we will taper off and try something else. If it does work then after the treatment the seizures shouldn't return.
* It has similar side-effect to steroids- excessive weight gain, water retention, “moon face” characteristics, Irritability, Anger. Sound fun yet?
* It can affect the kidneys and liver and mess with his blood sugars so he will be monitored every 2 weeks.
* It can increase his blood pressure so he will need to have to monitor it nightly.
* It decreases his immune system- This is what I am most nervous about because we are just about to start cold season. I was just starting to feel comfortable taking both boys with me everywhere. I guess we are back to staying home and limiting sick visitors.

Highlights from appointment with Dr. Such Neibar (rehab dr)
* Results from his hip X-ray show that he has mild hip dysplasia (they come out of socket) so she wants us to put him in his stander more often (3 times a day for up to 1 hr each) to erode the joints.
* Tight ankles and hands- keep stretching them every day and go back to using the leg and arm braces.
* Neck tortacollis- he still can move his head to the left but the fact that he prefers to have it to the right is making his right neck muscles stronger and shorter. We will start using a neck brace to keep his head mid-line and possibly botox his neck muscles in the future.

Britt trying out Char's new sensory therapy (Thanks Suz)
GOOD THIINGS I'VE NOTICED:
A month ago Charlie was discharged from speech therapy because she thought we could do everything she was doing at home. He seems to enjoy baby food. On a good day he can swallow ½ jar of sweet potatoes. We try to practice this everyday. He also likes to suck on pretzel sticks.

Improved vision: He is doing so great with his vision. He is now following moving objects more and more. There are no indications that he recognizes anything that he sees yet. Eyes still prefer to be to the right but now he will occasionally move them to the left. The right eye also still drifts to the right.

Deirdre

2008-08-12T09:06:00.005-06:00

Ode to Deirdre

I would be remiss if I didn’t take the opportunity to thank my Aunt Deirdre. For the last month or so Charlie has had numerous therapy appointments of all varieties w/ any number of healthcare professionals but perhaps the therapy that serves him best is his twice, yes folks twice, daily visits by his Great Aunt Deirdre. When Charlie first came home from the hospital we knew the bulk of his therapy needs would fall on our shoulders or perhaps more honestly Angel’s shoulders since she decided to marry an inept, inane and oft times invisible Lion of Leo J. Muir. So for the first few weeks home my dear sweet and super hot wife was undergoing stress of epic proportions and on the top of her list was the hours of therapy that Charlie wasn’t getting. Largely because as a partially single parent she was raising a chronically ill little boy and a green ranger who has soccer, tumbling, craft camp and swimming lessons and there just weren’t enough hours in the day. Thanks for saving my wife’s sanity.

Editors Note: Rod is Deirdre’s hubby and one of the few people left in the world that I genuinely fear. He’s an old fart but could easily pound me to dust. Gammy is my Grandma who has left us for the hereafter. She is most directly responsible for the way our family operates and the catalyst for my zealous following of BYU football. She loved the Cougars, a good Coke (in the bottle) and a proper constitutional. We all miss her.

Rob you said that Merilee was the only family member to respond well here you go ready or not:

I remember stopping at the house the day before Charlie went into the hospital. He was sleeping in his car seat and I thought at that time what a beautiful baby he was and that there was something special about him, couldn't put my finger on it at that time, but now I know. When I heard about Charlie I was sick, I literally felt sick to my stomach and thought how can this happen to him. When Rod and I came into the hospital that first Monday that you were there and I saw Charlie my heart just broke. But I was so impressed by you and Angel that I thought if they can do this so can I. I remember the blessings that were given to you and Angel and I felt the peace and comfort of a loving Heavenly Father and I knew then that you would not walk through this alone, that our Saviour would be there to help and carry you through. I felt Gammy there with her love and support as only Gammy could give. I believe that she has been there on many occasions to hold Charlie when we could not. I felt the heartache of both of your mom's for this sweet grandchild and to a small extent I felt the same thing almost as he was a part of mine grandchildren as well. During the 2nd week in the hospital I don't think that was a day go by that I did not cry as I read the blog several times a day. But as I visited with you and Angel and Jared one day, I saw the faith that you had and that you were willing to trust in the Lord and do whatever it took to take of Charlie. I wished that I could have had your faith and your courage. As the weeks dragged on I know that you had some hard days but we did not see those, all we saw the strength and the courage to go forward. I knew life had not dealt you a great hand, but to go forward and to show us how to cope was amazing.

I was amazed as I am sure that you were at the number of comments left on the blog from people all over the world. I said to Rod, how do they find it? But I realized that as you shared your trial with us as a family that you also shared Charlie with many others who have been touched by his story and your courage.

I am BLESSED with the opportunity to see Charlie on a daily basis and to feel of his spirit. He is a giant in a tiny body. He has taught me to continue to keep on keeping on even when trials are placed before us. As I leave your house each day I am a better person because of Charlie, there is something about him that boosts my spirit and makes me want to try harder to do things that I am suppose to do. I love him as if he were one of my own and quite often I tell him that grandma D is very proud of him and that I love him. I love to see the progress that he making.

I too am grateful for a family that will rally and support us in our trials. I know that Gammy would be proud of you and her family as we continue to try and do as she has taught us to do. I want you and Angel to know that I love you both and your sweet boys, it has been an honor for me to be in your home and see the love that you have for each other and for Britt and Charlie. Know that I am willing to do whatever I can to help and that you and your family our in our prayers on daily.

Thank you for allowing me to be part of your lives.

Love,Deirdre

Shari

2008-08-06T16:13:00.001-06:00

So I am just one of the blog followers, and everytime I read it, I crack up on the way that Rob puts his thoughts in writing. Its so funny and inspiring at the same time. I wanted to tell you all that you are such a great, close knit family and it really pays off for all of you. Charlie is so cute and the reason I got into following his blog, is through KSL, I love that site. This story really sucked me in for the fact that your all such a wonderful family, Charlie is such a doll, and the fact that I have many experiences with Primary Childrens Hospital. Primary Childrens has worked miracles for my family and I. I have a cousin that has a heart condition (that we didnt know about), we went swimming one day, she had a cardiac arrest and ended up under the water for about 7 min before I found her at the bottom. The Drs didnt give her a chance in surviving and to top it all off her parents were on a cruise. They received a message aboard their cruise ship that their daughter had drowned and they needed to get back to Utah. It was a really grueling experience for the family watching and waiting to see what would happen. She was in a coma for 3-4 weeks and then had to re-learn how to walk, eat ect. again. She has survived this ordeal, and hasnt had any problems since. She is a healthy 25 year old, married and trying for a baby. (This happened when she was 11). So I do believe in miracles.

Also I had a baby when I was 18 years old, a little girl.(I know what your thinking Rob, "wow she started young"!) Its okay its the truth. Anyway I had no idea how to be a mom, and everything was very new to me. My daughter spiked a high fever and we ended up in Primary Childrens as well. The worst thing was all the tests they had to perform on her being 1 1/2 months old. The spinal tap was the worst. We finally found out that she had what is called Renal Reflux (where her urine doesnt drain out all the way and it comes back up to her kidneys, causeing urinary tract infection), she also had a blood infection in which we stayed for about a week on IV medications (which is nothing compared to your stay, you have us beat). She did have to take medications by mouth for a year, but the problem did fix itself. Thank God.

Okay and here is another story for you (yeah, I am not done yet! ha ha ha) My husbands goddaughter was diagnosed with Leukemia (ALL) a couple of years ago, which she stayed for about a year in the hospital due to treatments, complications ect. She is doing great now, has been clear for about a year with no signs of it coming back. She does have to be tested every couple of months, but hey you do what you got to do even if it means having your kids get poked by a needle every couple of months.

I also have a stepsister that works at Primary Childrens (AMY) she was one of charlies nurses & two other friends that work there. I love that place.

Okay so this is the end (Thank God huh!). I just wanted to say that your family is awesome, and I wish the best for you all. Believe in miracles because they do happen.

Riann Taylor

2008-08-04T06:56:00.003-06:00

I happened onto your site via another site. I am not even sure which one, but i am glad that i found you guys. My heart was regularly touched by reading everything going on with your family. And often i cried, reliving too much of my own story.

in oct of 2006 my son was born with a rare heart defect. Our large childrens hospital only see this heart defect 1 time every 2-3 years. So we were the lucky ones. In fact, we are the lucky ones. He was diagnosed at 5 days old and had open heart reconstruction at 15 days old. During this time, we stayed in the ICU on a vent for 30 days. We came home on oxygen and a pretty sick kid. However, with a lot of time, TLC and patience, we now have a healthier heart kid.

I am SO jealous of the book of charlie's story that was made by someone special for you guys. I did not know about blogging when this all happened and therefore, I sent out mass e-mails each day. Even to this day, i cannot go back and read them, even though i want to. I want to print them out and save for him, but i cannot go back there, not yet.

I am often thought of writing a book called, Grieving Normalcy. Unless you have gone thru this kind of ordeal, you just do not understand how much it affects the ENTIRE family. Our dtr was 3 when miles was born and she still has some PTSD when we go to the hospital. It changed our family for the better. I am now a part-time SAHM and a Physical therapist. (I could see many sides of your story). You world changes in such a dramatic way, you cannot do "normal" things, like just going out to dinner, or a quick dash to the store. The cost of everything is so expensive and we have great health insurance. (our son's hosp stay was $500,000 but we paid $500 total). We really had to watch out for germs and that is not easy with another kid in daycare. Normalcy has slowly approached our life and therefore the book is less a priority. However, we also work to raise money, but ours is for the American Heart Association. THis year our goal is $10,000, even though we are not close yet. It just seems harder to get people to give this year.

I love listening to all the changes and i am just so proud of you guys as a family. I believe that everything happens for a reason. WE were chosen for this as our jobs as parents, and hey, you guys are doing such a great job. Please check out our blog, http://www.proofofpurpose.blogspot.com/

thanks for sharing, hope to keep in touch

riann taylor,

mother of sophia and miles- truncus arterious repair in 2006

Sucks and Smiles

2008-07-31T18:10:00.003-06:00

For the last while per the entourage of therapists we have gradually started introducing varied items orally and w/ baited breath monitored Charlie’s disgust or acceptance of said items. It has been long known that Char is quite fond of a pinky finger and if left to his devices he would chew any and all pinky fingers into damnation leaving the donor w/ a mutilated stump. But that’s just it, he only likes to chew not suck.

I figure there are two ways to look at this; 1. Charlie must be a Cougar fan insomuch as he isn’t used to sucking. 2. Charlie might be a yewt whilst learning from example watching his mother chew on things like 4th and 18, 17-10, "Beck under center, 13 seconds left…" etc. Or perhaps there is a less likely 3rd idea that could explain his plight. We are told that the act of sucking is very difficult and takes a great degree of coordination. Which in somewhat of a backhanded way proves my long argued point that Tommy Grady (Utah, 05-07 QB) and Steve Tate (Utah, 04-07 DB) are great athletes simply by deducement of the degree which they suck/ed ergo great coordination and capacity of that which is difficult. Comprende? Editors note: Rob is excited for Football to start Aug. 30th.

However sucking as it is related to Charlie is improving albeit at a glacial pace. Last night Ångel gave me a bottle of formula while I was enjoying my snug w/ Char just to see what would happen. Tantamount to the crimson team on the hill Charlie did some good sucking. Off and on for near a quarter hour he worked the bottle not w/ what would be considered calf like proficiency but was entertaining the idea that relearning sucking might not be a bad idea. It was only about an ounce of formula but most of it was extruded by his own power and all of which was swallowed nicely w/o any ill effects i.e. gagging, choking, aspirating.

Good Dream/Tender Moments
Last week Rob and I were cleaning the house at 11:30 at night (We both do better at night than in the morning). Charlie was in a deep sleep on the couch with his heavy exhaling snore. As I came over to check on him I saw a twitching smile. It reminded me of a newborn when they are in a deep sleep and they smile due to gas bubbles or dreaming or just because they need to exercise their mouth. Whatever was causing it, the corners of his lips turned up and then returned almost immediately to a relaxed stone face. This happened 3 times for a split second each and then I ran out to the garage yelling "Rob come quick, Charlie’s smiling". He sat down on the couch and saw 2 more split second smiles and then Charlie was done. Probably off dreaming of something else. I love knowing he still can smile even if it isn’t in response to anything

As I’ve said before, Coop gets meds at 8pm and then falls asleep for a while, he then gets more meds at 10:00 to help him stay asleep. Occasionally Rob and I delay the 10:00 meds an hour or so, on purpose, so we can enjoy a little cuddling when everything is calm and we can just attend to Charlie. He will calmly wake up and look around and seems to connect with us more so than in the day. His body is not very active this late at night but his eyes seem to be more active than usual and he will just stare at our faces.

A week ago during this time, I was placing my finger at the base of his fisted palm. In the past, in order to get him to hold onto your finger we have either wiggled it into his fist or waited until he opened his hand and then quickly put it in. This night, however, he purposefully (a word we use sparingly because we aren’t sure he means to do most movements) opened his hand and then tightened it around my finger 8 times in a row. (That is why I can say purposefully). It was like he had figured out that if he wants to grab something he feels that he first needs to work against the stiffness/tone in his body and open his first and then close the fist again. What a discovery for him.

Emily in PA

2008-07-29T16:05:00.002-06:00

I've been reading Charlie's blog for a while now...some friends of mine had a link to it on their blog, and I was immediately drawn in. You guys have been a huge inspiration to me, especially as I've faced physical challenges with my little boy. Our son (our first baby) was born last April with a congenital defect in his right eye that left it sightless and malformed to such an extent that doctors thought it best to remove it last August. He has a prosthetic eye and is otherwise a healthy, happy boy, but the process of acceptance and understanding has been such a rollercoaster for me. And although I was only 2 at the time, my older brother passed away after contracting meningitis when he was 4. That has been a trial some members of my family have never been able to quite get over. You are so blessed that Charlie was able to fight through it, even though it brought a different set of trials into your life.

I know that physical and mental ailments come in all shapes, sizes, and levels of severity, but that doesn't lessen the impact these ailments have on family members who are trying to cope. And I think your family has done an unbelievable job of coping and being obvious supports for those around you. I'm sure you have been bouyed up through prayer and support from others, and my husband and I have also experienced the blessings that come when others pray and fast on your behalf. I just wanted to say how much I admire your strength and your determination to move on in life, because, really, what else can you do? You've been such an example to me and helped me come to terms with the fact that everyone has their own trials and Heavenly Father has a plan for each of us--our children are His children and He knows what will be best for them, even if it sometimes causes us some pain or heartache as parents. And we are His children and He knows what's best for us, even if we hope and pray the outcome might be different. Our little boys are so precious to Heavenly Father that He knew they could handle whatever this life threw at them, and so could we.

Your family is in my prayers constantly and although I'm sure there's a "creepy" factor to getting random emails like this, I hope you know your family is an incredible example to those of us who hear of Charlie's story through the grapevine!

Sincerely,
emily (in Philadelphia, PA)

Angie Nadauld

2008-07-26T12:38:00.002-06:00

You all don't know me from a whole in the wall, and you probably will never know me. I have been following your story for quite some time. Call me a blog stalker if you will, but I get really intrigued by stories of young children. I got to your blog through little Andrew Mathis, who also has no clue who I am but I know Andrew's Gramma as she lives in my ward.

Anyway, I will cut to the chase, little Charlie has touched my heart. I mean that with all sincerity. I have a son his age, and a son who is four years old. I often times would get frustrated with my two little naughty boys, and I still do, but I have such a greater appreciation for them. I saw what happened with little Charlie, how he was healthy and happy, to now being deaf and blind. How devastating. But the way in which you handle the trials you have been given, have touched me beyond belief. I am sure you have gone through many stages of grief, but I am so touched at the complete dedication you have to that little guy. It is amazing to see how you have accepted the trials you have been given, and enjoy the best parts of life.

I am a huge Ute fan. THis is another area of major change of thought. I have NEVER been a fan of BYU. I don't know why, maybe it is the fact that I am a U of U Alumnus, or maybe I just don't like the color blue, and the fact that their QB cried on TV after losing a game had a huge impact on my outlook on the team. But the fact that both of those football teams came and spent time with Little Charlie, have changed my out look. BYU is as cool as the U Of U.

So to summarize, Charlie and your whole family has taught me to appreciate what I have. I now appreciate that I have two boys that are capable of being naughty. I appreciate that I have two little dudes that will fight and steal toys from one another, because, who knows what may happen. It is all in the Lord's hands. I have learned to be grateful for what I have, and because of that I enjoy my boys that much more!

Sincerely, Angie Nadauld, a complete stranger!

Marilee Christian

2008-07-24T16:09:00.006-06:00

Fortunately for you all we have had some good response to my plea to help w/ the blog and now you will be able to hear more from competent, sane folks and less from me. There are great stories out there and starting w/ today’s post you’ll get to hear them. Those of you who are thinking about contributing hopefully in the next few days you’ll hear what is shared and you’ll stop thinking and start doing.
This first offering is from Charlie’s Aunt Marilee who lives in lives in “The Volunteer State” and was up here this summer and had a chance to see Charlie for the first time live. She has been a frequent commentor on the blog and I always appreciate her wit and humor. Marilee is no stranger to the angst of full-time care as a few years back her husband David suffered a stroke and she has since served the mission of a selfless caregiver. Thanks for the submission.

My Charlie Story

To quote Rob “We’d love to hear how Charlie has influenced you, whether big, small or not at all.” You asked for it—you got it.

I first heard of Charlie’s illness and blog through an email from Susie. What a terrible thing for Charlie, a child I had never met or held or seen. But my heart was also broken for the people I did know: my precious nephew and his wife and his grandma, my sister, who has always put her family above all else. Day after day—no, hour after hour, I checked the blog for some word that Charlie would be okay. Alas, that was not to be. But then something else happened. I found my family again.

By following the progress, the ups and downs, the gains and losses I gained what I had thought I had lost; an everyday connection with my sisters, brothers, cousins, nieces and nephews. Is that selfish? There lies a sick child, a gift from heavenly father, suffering and struggling and I’m glad that there is a blog to give me a way to connect with the sorrow and pain of my family.

And, whoa, there were pictures. There, standing by Charlie, was my family. My sisters and brothers, children I remembered as babies--grown, and some, like Charlie, I saw for the first time.

Then, as word of the blog spread, there came many more. These were people who were inspired to comment and share their thoughts, as well as prayers, for a child they did not know. But for one reason or another, they could empathize with Charlie and his family’s plight. As I read their stories, along with Charlie’s, I was amazed at the faith and resilience of the human experience. Now, I had always understood that in theory, but there it was, in the comments of families of other children who had suffered in illness or accident.

I have not always been strong and I didn’t expect to spend my golden years as a caregiver, but reading the excellent adventures of Charlie and his family have given me the great blessing of –hey, my life ain’t so bad!

2008-07-22T08:21:00.001-06:00

Just a Couple of Thoughts...

2008-07-20T14:24:00.008-06:00

Fill up your favorite beve’ and buckle down, w/ all thats in my head this post has novel potential and could w/o intent become protracted. Angel and I are aware as any w/ the paucity of posting as of late and for those of you out there who actually still care we apologize. Understand as we try to, that there just isn’t that much in Charlie’s world that warrants posting now that we’re home, settled and living our new life. Granted we could continue on with repetitious and feckless updates about his daily routine but I don’t think that’s what anyone wants. I have an idea however, that might offer certain appeasement. We’ll keep posting about Charlie’s journey w/ pertinent events and improvements/regressions as they occur but due to the regrettable infrequency of said events we need some filler. I could continue w/ capricious and increasingly criticized posting where quality is oft a direct result of waning motivation but I’d rather subpoena your assistance.

Here’s the D-Low, those of you who consider yourselves regulars to Charlie’s blog, Angel and I want to hear from you. So I’m thinking in correlation w/ participation we would post your stories, weekly, monthly or whatever. We’d love to hear how Charlie has influenced you, whether big, small or not at all. Maybe you have a similar yarn, a tale that I think not only Angel and I would like to hear but everyone else as well. I’ve had regrets about this blog from the beginning but conversely we’ve had many great experiences because of it, reuniting w/ old friends and making so many new ones. We’ve loved learning and relearning about your lives and in most cases your lives are far more interesting than ours so I think it’s time to get a touch deeper into the world of some of those who Charlie calls friends. Capeesh? Entries of any length are welcome and if you have pictures you’d like included, well include them, whatever blows air up your skirt. Just start writing, pay no mind to grammar, spelling or punctuation, I dont. Charlie’s email is charliecooperchristensen@live.com .
We’ll see how this goes, it’ll only be as good as you make it or it might go off like a nun’s knickers but hey I’ve been full of bad ideas all my life so no biggie.

Ode to Jared

For the uninformed Jared is Charlie’s uncle and my little brother. He’s a good kid and it’s high time you get to know him better. It seems like in the not to distant past I was still duct taping him to his bed post while he was clad in nothing but his skivies but as with all things, especially things like Charlie’s aunt Susan, he grew up or in Susan’s case, grew way up. Happy 80th sis I’ve got fresh tennis balls for your walker. Many of you probably know who Jared is, but few really know him. You see, he doesn’t say much and he likes it that way. (I know what you’re all thinking, "Rob has a sibling that doesn’t suffer from oral diarrhea?" Shut up!) He takes after our Granddad, Papa, who also is a man of few, and or no words but both are men who live by the creed that one ounce of action beat a ton of words. Neither of these fellers would probably ever tell you that they like you let alone use the word love, (unless your Katie, the only person Papa has ever openly admitted to liking.) and to illustrate my point I’ll share w/ you all the nicest things that these two have ever said to me. 1. Papa; while shingling my mothers roof, Papa upon suffering residuals of my faulty elimination stared me right in the eye and affectionately offered, "How can that much stink come from one man?" 2. Jared; after I had just been ushered into his ambulance as consequence of an ill fated skiing trip that ended in assistance from Davis County Search and Rescue and a helicopter extraction he uttered, "10 million sperm and you were the fastest?" In a round about way this brings me to my point. Jared really likes Charlie. He’s never said, but this is how we know. When Charlie first entered the Hospital we were in the final stages of finishing our house and I was scraping a leg worrying about deadlines, cabinets, flooring, etc… and he came to me in the PICU and simply said "You’re where you need to be, I’ll take care of it." He did. I didn’t worry about the house once while Charlie was in the hospital. Jared had to step way out of his comfort zone to fulfill his promise, he had to call people on the phone, talk to folks and coordinate the efforts of our little extreme home makeover. All of which went off swimmingly because he was dead set on having the house done so that when Charlie got out of the hospital he could come home to a new house. He did. That would have been enough for most folks but not Jared. One evening about a month ago I came home after being out of town for a week and found my yard graded and trenches dug for sprinklers. The kid doesn’t quit.

The next day Jared’s friend Greg from Farmington Fire showed up w/ a truck full of pipe and sprinkler parts and I was mid infarct wondering how to pay for all this stuff and Greg told me "Rob, It’s all taken care of." What??? He wouldn’t tell me how but after further investigation I discovered that a meeting took place with an incredibly generous group of people. These were folks, some of whom were familiar w/ Charlie but also some were folks that Jared had helped in some way or another, folks that and had tried to compensate him for his services w/ no success so instead they took advantage of my patheticness and bought my sprinklers. Now cogitate on this; how many people think highly enough of you that they would give to your unfamiliar sibling just because of who you are and what you’d done for them? I can think of one, Ryan Sterl the Pearl Webb. He’s 3 and he thinks I’m cool. So to this incredibly generous group of people, thank you. Thank you so much for such an overwhelming expression of selflessness. You’re great and I’ll try my damndest to find out who all of you are so I can thank you personally. Believably this story does have a bottleneck so here we go. Sprinklers got put in, w/o my help, lawn was laid, w/o my help, basically I’ve got a brand new beautiful yard that was all done w/o my help. The thing about Jared is he’ll never take credit for it, he wouldn’t even expect a thanks, he’s just one of the few people left out there that tells you they love you by showing you and we know Jared loves Charlie a ton. So Jar-head, not that you care, but thanks. Charlie loves you too.

Bear Lake Charlie

2008-07-09T23:37:00.007-06:00

I’ve got heartburn w/ many of you out in blogland, this poll was the worst idea in the history of earth. About as bad as standing on an Aircraft Carrier in the middle of a war and saying "Mission accomplished!" It was intended to be a sure-fire implement to get my wife to post. Many of you shout from the heavens proclaiming your love for her posts, I thought that if left to the people it would be a done deal. Apparently not, 59% of you are idiots. Some have suggested (Whit) that this poll was a tool for me to glean praise, compliment and reassurance. I would have expected that you knew me better (Whit). For those of you that may not know me w/ the intimacy of my Senior Ball date rest assured that Rob’s ego needs no additional stroking as he is quite adept at personally bolstering his self-esteem and any additional complementation is icing on the cake. However, as a good sport I will concede and offer my best effort to give Charlie’s Bear Lake trip a voice.
**Disclaimer: Had you voted for Angel the following post would have been filled with all sorts of interesting details written with such exactness and piquancy that NASA engineers would be left blushing. Instead 59% of you have asked for tangent filled inane ramblings loaded with vast amounts of pretentious diction and manufactured verbiage only understood by the voices in my head.**
Charlie was, as Britton would say, "wicked stoked" to go on his first trip since he got sick. I know this because he told me. I wish. Actually one could deduce his excitement by his demeanor while enroute. He was the most pleasant little boy and did famously on the 2 ½ hour roadie up to Sweetwater. This was in large part to the engineering done by his mother to get the feed bag up and running in the truck. Once we got to the condo Char had a little snooze while the orchestra of unpacking started. You know what this post sucks already. I sound like a Missionary giving a mediocre travel log at his homecoming and if I keep it up you’ll feel obligated to come up afterwards, shake my hand, say welcome home and tell me what a great job I did on my talk then come to my house and eat my food. I don’t want that and I don’t think you do either.
Lets talk about highlights. Charlie went swimming and didn’t hate it. I did. I was more than a bit squeamish about letting him in the urine filled pitri dish of a kiddy pool, however his mother was not. She had confidence in the professional opinion of Charlie’s doctors that swimming pools were ok. So it was a little backstroke for Char while Britton showed me all the new tricks he has learned since he enrolled in swim lessons. He’s so advanced and he’ll be the first to tell you that he’s a level 2 swimmer (all you have to do is put your head under the water and blow bubbles to pass level 1). Another highlight of the trip that was amazing to me was how well our little man did with playing musical Charlie. All weekend he was cyclically passed from Mom to G-ma to Aunt to Cousin to Dad to random stranger to Uncle to Brother to Cousin and tolerated it way better than in the past. Sure he still gets over stimulated pretty easy but he’s improving. I think Charlie’s best Bear Lake experience was that he was able to enjoy the time-honored tradition of a nice long afternoon snooze down on the beach. When he woke up he and his mom played in the sand for a bit and I think it was well received. We debated on whether or not to take him for a boat ride but with the condition of his vestibular system still a question we opted not. The trip was a quick one, we usually go for a week and although we were only there for 2 days we still took the full weeks rations and put a pretty good dent in it, I think it was worth it. Angel may tell you a different story but only because she did 99.9% of the work in getting us there and making sure everyone had fun. I was busy putting the fear of the Almighty into nieces and nephews and braking Rod’s wakeboard tower. Thanks for a fun trip toots.
Now for all of Charlie’s blog peeps I hope that you will consider the marginality of this post when asked in the future whom you’d like to hear from.

Road Trip

2008-07-05T01:10:00.003-06:00

Charlie is headed for his first vacation since he got sick. We're on our way to Bear Lake for 2 whole days. He and his Mom can't wait to get out of the house for a while. Lucky for all you concerned folks out in blogland we might just have something worthy of a real post once we get home.

Having a Ball

2008-06-27T09:41:00.011-06:00

Charlie in a pool full of balls to encourage sensory imput of his surroundings and how his body can affect things.

I have been getting some requests to update again. Sorry it took so long. We have had two very busy weekends with each of our families. First a reunion/engagement party with the Christensens then a reuinion with the Barlows. I find it difficult to complete a task without an interruption but Rob is home today so I have locked myself in the computer room to complete this. .
SO here’s what has happened at our house lately.
Charlie is now set up with 7 different therapists (3 through IHC Rehab, 2 from Early Intervention and 2 from the School of the Deaf and Blind). He also has 6 different doctors to follow up with right now. I think this will decrease as he continues to improve but I’m glad to have access to their cumulative knowledge in the early stages as to not miss anything. I want to get as many therapists as possible involved to give him the best shot at improvement. However, that leads to a busy life for him and me. A typical schedule is as follows

Typical Schedule for COOP
8:00-Meds, bath, dressed
8:30- Exercises with Aunt Dierdre
9:30- Stander/nap
10:30- get ready and drive to therapy
11:00- therapy
12:30- get back home and settled
1:00- Eating exercises-taste a little pudding
2:00- medicine, nap
3:00- Exercises with Aunt Dierdre
3:30- nap
4:30- therapy in house
5:30-eating exercises-chew on things
6:30-8- agitated, likes to be held until falls asleep
8:00- meds, put on ankle braces, good night Sweet Boy

in between we are supposed to stimulate his brain by exposing him to different textures, sounds, finger play games, temperatures, patterns, lights etc.

Then add in Britt's summer recreation (soccer and tumbling) and craft day and swim lessons. I truly feel like a taxi service but love being a part of it.
We went to see Coop’s pediatrician last week and he said things are going well. He is right on schedule for his weight, height and head circumference. A growth spurt in his head measurement could mean that the shunt is not working so it’s important to keep monitoring that. Dr. Lam was very current on Charlie’s situation and gave us some good advice for handicapped kids. Since Coop was in the hospital during his 9 month and 12 month check up times he didn’t get any vaccinations so he is a little behind. Dr. Lam didn’t feel like he wanted to overwhelm his system so he only gave him 2 and we are supposed to follow up with him in 2 months for more. When Sherry the nurse gave him his shots he let out a real boy cry instead of his normal moaning cry. I thought it was pretty cute.
Lisa from IHC Rehab was able to score us this stander for Char to use. It is awesome! She fit it to him during therapy. I am supposed to work him up to 45-minute sessions 3 times a day but it’s a little hard to find that much time. So far I have been able to do it at least once a day for an hour. Surprisingly he doesn’t seem to mind it and even falls asleep. It also puts him at a great position to work on eating and visual stimulation exercises. I’m really excited about it.

I tried to increase his feeding rate from 55cc/hr to 60cc/hr and he threw up so we went back to 55. Then he continued to throw up throughout the day so I’m not sure if it was the increase or just some stomach upset/reflux. Maybe in a few days I will try again.

Wednesday I took him back to Primary Children’s for two more appointments. First was the Dr. Dries, the ophthalmologist. He spun black and white drum like this oneand Coop’s eyes fluctuated up and down (nystagmsus) so he said, “Yes Charlie can see!” We had suspected that but it was nice to have it verified by a doctor. However, there is some mild damage to the optic nerve (the wiring between the eye and the brain) and presumably brain atrophy in the vision area. In meningitis it is common to see improvement in vision for several years after the injury, but Dr. Dries feels that Coop will have severe vision loss the rest of his life.
From that appointment we went to follow up with Dr. Warren, the ENT surgeon. He checked out Charlie’s implant scar and the magnet site. He said everything looked good and we only need to come back if there is a problem. Then we met my dad at Liberty Park with Britt and Max before we had to head home for Charlie's food and meds. After swim lessons Ry joined us for a Boys Only (except for MOM) Slumber Party4 boys in a bed and the little one said "roll over I'm tired"RyRy thinks Char's lips need some tasty lip smackers
Things that have improved since we have been home:
Fewer medicines
Doesn’t need as much patting-mostly just in the evenings
Tolerates position changes and movement better-
His hands/fingers are more relaxed-not clenched constantly
Moving his head side to side on his own
Moving his arms at the shoulder on his own instead of only at the elbow
Eyes seem to be more active-still not focusing on anything and still dilated
Swallowing small amounts of pudding/food everyday
Only needs stomach venting occasionally
Tolerating his feedings through his g-tube better

Of course I would like to see quicker progress but I am learning patience.

Britts favorite way to watch TV and relax after soccer-holding Coop's hand

A highlight of our week was finally meeting Megan and Alyvia. I know it's hard to believe but Alyvia is even cuter in person (and her mom too). She knew just how to pat Charlie, Britt loved showing off for her and she has the cutest giggle ever. Rob would have given her anything when she smiled. Thanks so much for taking the time to visit-you will never know how much it means to us.

Knock, Knock? Who's There?

2008-06-11T23:06:00.002-06:00

Angel says I have to post this. I on the other hand have vacillated since Monday whether this blog should be privy to every happening in Char’s life or perhaps we exercise familial selfishness in certain instances and keep a few things to ourselves. Nevertheless, Ang has spoken and since I enjoy sharing her bed I will concede and share a few details from this experience.

Monday while sitting in the examination room of Charlie’s Pediatrician, Dr. Lam, I had the coolest Rob/Char experience since he began his new life. I was holding the little man in my lap having a conversation with him about how I couldn’t care less if Bronco is or isn’t recruiting players while on their missions, allegedly, and patting his rear trying to keep him in a good mood till Dr. Lam came in. For those of you who don’t see Charlie oft here’s a tich of background, when Charlie is in his normal zone he usually has his chin in his right shoulder and his eyes are glaring off to the upper right. Similar to the look you all gave your parents when they just told you that you couldn’t go to Lake Powell w/ the Chilton’s yet you knew you’d go anyway but you had to appear put out. Or if you can’t relate to that, perhaps the look you gave your mom when you got busted sneaking in at dawn after toilet papering a neighbors house for the 6th consecutive night knowing full well all apologies were in vain and you’d be out again the next eve to make it a full week of tomfoolery. And if you can’t relate to those examples or are still left wanting I can’t help you, just know that Char stare’s pointlessly to the upper right w/ one eye aggressively more so.

Enough of this unnecessary delineation, here is the point of this post. While I was looking at Charlie he looked back! Now this was a far different stare than many of you have witnessed where he might move his eyes in your direction for a second or two as you enter his visual field and then gaze off again. This look stuck and after about a half minute he tilted his head to the side just a touch similar to the way a dog does when your yelling at it and it thinks to itself, "Silly human, don’t you know I only speak dog?" It was like he was concentrating on me. I started smiling from ear to ear and then almost instantly he opened his mouth a little and the left corner turned up just a smidge all the while his eyes were focused and searching my whole face. This lasted only for a minute or two but I sucked in every second of it. Charlie was trying to smile at his old man and this was the first time since January 27th that I thought Charlie might still be in there. Know this, before Charlie got sick, smiles were not hard to solicit and I will happily blow air up my own skirt by saying that all he had to do was hear my voice and he’d immediately get a grin that would shame even the Cheshire Cat. Now some of you might be thinking to yourself, "Rob is just a desperate father grasping at straws." But, while I’m in the business of tooting one’s horn I’ll continue, it has been difficult on the highest levels imaginable to accept the reality of Charlie’s situation and with the help of a "swimsuit issue" hot wife, a Infectious Disease Doc who is honest almost to a fault and a Suidae loving Resident I feel as though we have come to grips with our boys woe rather famously. This event in the Dr.’s office was different. Granted it wasn’t a grin worthy of a glamour shot but it was a glimpse of consciousness. And wouldn’t it make sense that if Charlie’s dain bramage was significant enough that he no longer knows how hold up his own head or swallow saliva he’d also have to re-learn things as elementary as smiling? It was surreal but now more than ever I know Char is in there somewhere, and though he may come and go it gives me hope and if I remember right some crazy physicist who figured out what E equaled said, "learn from yesterday, live for today, hope for tomorrow." That’s what I’m trying to do as Charlie’s dad. Hunter’s mom and dad, Emily and Bryson made a comment about seeing progress in their little man, "Don't get discouraged. Sometimes Bry and I are the only ones who notice progress with Hunter." It’s a bit unnerving how true that is.

Dr. Visit Update

2008-06-04T17:31:00.007-06:00

Tuesday we headed back to Primary Children's Hosptial. We had an appointment with Dr. Such Neibar at 10:00. I had given him Clonadine for the drive because he isn't comfortable being strapped in his carseat. I think it has something to do with the angle it sits him in or the straps pushing on his tube. Terry Such-Neibar was excited about the way things are going although she was disappointed she wasn’t able to see him awake.

Highlights of the visit:

Because he is calmer we have permission to adjust his medication times to fit our schedules and start decreasing meds according to his tolerance (although we are not supposed to take him off of seizure meds or reflux meds yet). Instructions to wean off of Tranxene first and then move on to Neurontin and report back in August. Laxatives and suppositories can be given just as needed instead of daily.

We should follow up with the Neurologist in 6-12 months to see about coming off Phenobarbital and Keppra if he doesn’t have any more seizures and check in with Dr. Brockmeyer in the next 3 months to check out his shunt.

His ankles appear a little too stiff for Terry's liking so she wants us to wear the ankle braces more often. And he head is favoring the right side again so more neck stretches.

Now he is 1 year he should be doing standing exercises to increase the bone density and keep the hips in joint since a normal one year old should be standing. Standing also helps with digestion. She wants us to start by holding him in a standing position for a few minutes and slowly work up to one hour a day. One of the therapists will see about letting us borrow a stander like he used in the hospital. She also ordered a hip x-ray as a baseline so we can compare his hip joints and density later on.

Most of my questions revolved around feeding which was deferred to Dr. Jackson who we met with at 2:30.

Dr. Jackson appointment:

Luckily, Charlie had received his Tranxene and Neurontin at 2:00 so he was pretty sleepy during the appointment. The nurse put a numbing cream around the g-tube and let it sit for 20-30 min and we also gave him Ativan. Dr. Jackson came in and explained the procedure and said it is pretty uncomfortable but is really brief so they don’t feel like it is necessary to do anesthesia. The old tube was cut and the yanked out of his stomach. It was NOT gentle in the least. Sort of like tearing off a bandaid with one big yank. Surprisingly Coop didn’t cry at all but it did wake him out of his deep sleep. Dr. Jackson was an hour late for surgery by this time so I didn’t get a chance to ask everything but I did tell him that I think Charlie was still having reflux issues despite being on Prevacid. When we discussed the dose he said it was far too low for his weight and tripled his current dose to start out with. He said our regular Pediatrician could follow up with the other issues such as consolidating Charlie’s feedings, testing for stomach acid, monitoring weight fluctuations, etc. So unless we have problems with the g-tube or it needs to be converted to a G-J tube then we won't ever see him again. The Mic-key button is low-profile so isn't as likely to pull it out. It is also easier to dress him without the bulky tube. Dr. Jackson said his hole looked really well healed and he didn't see any granulation tissue (excessive scar tissue). Yea!

Because Coop had done so well with his appointments we went to see all of his girlfriends and Dave at the neurotrauma unit. It was so fun to see everyone again and made me miss them even more. By this time the numbing cream was wearing off so Charlie is letting us know that his tummy hurts.

Update on Outpatient Therapies-

VISION- :) A vision therapist (from the school of the deaf and blind) evaluated Coop on Monday. I told her that I have noticed a change in the way he is moving his eyes around although it doesn't seem consistently purposeful. After assessing him she felt that he has "vision awareness" to large black and white contrasting designs but he does not "attend" to anything yet. From what I gather he senses something in his visual field but does not focus on it or follow it when it moves. When the pattern was placed where he was looking he blinked a lot and his eyes widened. He got tired after working with her for about 15 minutes. I was so excited about this news because it gives us somthing to work with. She will bring specific toys next time and a light box to encourage his awareness and hopefully progress to focusing and following. We need to start exposing him to more visually contrasting objects with few details. She even gave him a touch quilt that is black on one side so when an object is in front of it the background of the house is not distracting.

HEARING- Coops implant has been re-programmed and we are looking for clues for if he is hearing anything. This is way harder than I thought it would be. The only clues he gives are being mad or content. When he is mad there are so many other things it could be than loud noises. So far I haven't seen anything consistent in his behavior to make me think he is hearing but Terry said that it may be one reason that he is calmer since we have been home because it is "white noise" even if he isn't processing. The implant is on and sending impulses on the nerves to the brain but his brain may not know what to do with that information or I may not know his behavioral clues yet. I meet with the audiologist once a month to re-program the device so I can try different things and look for clues. He said to plan on it taking a year to work through everything. Also we are having difficulty keeping the device on his head while he lays down because he moves his head from side to side but we are trying to be more vigilant. We also had a hearing therapist (Paula) from the school for the deaf and blind come and is teaching us how to give tactile signals to Charlie to start communication. We are each supposed to choose a touch signal to let him know who is going to touch him (like introducing yourself) because he can't hear of see well enough to know who it is. For example the hearing therapist takes his hand in hers and squeezes 3 times so he will know who it is that is going to be messing with him.

Paula gathered up a tumbleform chair for Charlie to use. It helps to sit up at different angles. Thanks Taylor for giving it up so we could use it ;) It sits on wheels and has a strap to pull so Britt tells Charlie that he is taking him on a ride like they have at Disneyland.

PT/OT- We went to our second PT(Lisa) session today (it took quite a while to get evaluated and set up) but have been several times to OT (Roxanne). I think things are going well. Coop is still working on a lot of the same things as when he was in the hospital. Head control, transitioning from different positions without getting upset, flexibility, bicycling his legs, initiating some movement with rolling. My goal this weekend is to write out a therapy program so we can make sure to get all the practice that he needs everyday.

Speech Therapy-(this is really all about feeding right now)- we have worked with Carey to keep his mouth muscles working even though he isn't using them very much. We are also giving him tastes of pudding and baby food. He seems to chew and swallow when it is placed in his mouth but doesn't open his mouth or lean forward to get more so it may be more of a reflex. He still likes when we put flavored chapstick on his lips and will suck on his lip a little. He likes to chew on our fingers but only occasionally likes to chew on a binky. We still think he may eat through his mouth down the road but like everything else it takes a long time. We are supposed to start doing oral therapy 3 times a day around meal times so he get used to it at different times. She also told me that Charlie's reflux medicine should be taken on an empty stomach or it is ineffective. So it probably hasn't been working the whole time because I haven't been doing that.

Quick Review of Week Ending 1 June, 2008.

2008-06-02T00:36:00.002-06:00

For all concerned, Charlie has done famously the last few days and has had an uber busy week. We’ve had some great visits, a bit of therapy and finished off the week with a trip back to Primary Children’s where Charlie was able to help out the folks from KSL with the annual Children’s Network Telethon. He’s a Superstar! The telethon experience could be a solo post however my motivation is lacking so perhaps another time. But needless to say it’s not a simple task to be on TV getting interviewed live while the little man sitting on your lap begins to move his bowels with reckless disregard for present company and concurrently producing rectal wind so plangent and pungent one would be hard pressed to find even the most veteran of sewer rats capable of suffering the barrage of faulty elimination and keep composure until the cameras turn off. Rough.

This coming week should be another busy one; on Tuesday Charlie heads back up to Primary’s for his first follow-up visit with the doc’s. He’ll see Dr. Terry, the rehab doc and Dr. Jackson the GI doc. Dr. Jackson has plans to convert Charlie’s G-tube into a button, or “Mickey button”, and then the current hassle of wrestling tube extensions will be alleviated. Also, my dear sweet and super hot wife is studying and reading all that there is about different kinds of therapy that Charlie desperately needs and will soon be formulating a strategy to help us help him the very most. Popular belief is that damaged brains show the greatest improvement in the first year post injury and Charlie is already at 4 months so if I know my wife, who is totally hot by the way, this house will be turned into a therapy boot camp before you know it.

Right now the day-to-day stuff for Charlie is getting more regular. He’s sleeping better at night and he gets uncooperative about the same time everyday. Charlie used to get Clonadine (Rx that calms him down really good) every four hours and now he gets it maybe once or twice a day. He also got quite a bit of Ativan while in the hospital to mellow his ill temperament and we’ve only had to administer it a handful of times since coming home. So there are some good things, some Charlie steps, and we’re hopeful they’ll continue. Thanks again to all of you for caring and praying for my little hero, all Angel and I ask is that you don’t stop.

Just a Few Pictures :-)

2008-06-01T23:21:00.014-06:00

Here are some random pics from this past week that you might enjoy and maybe even find yourself in.

Foxey Roxey and her Mamma.

The SUPER NICE Person... thanks again Ginny!

Roxanne, one of Char's new therapists

Charlie not really loving his therapy

Jada Rose's momma, Andrea

Uncle Troy telling Charlie stories about his dad that aren't even close to being true!

Here's a shirt he got from the "Oh my GOSH those girls are hot!" Birrell girls.

BOOMER !!!

The Gine's family w/ Dr. Terry and crew

my newest accessory

2008-05-28T22:44:00.013-06:00

My posts these days are usually about logistics, and don't worry this one will be too, you'll just have to wait it out.

When something tragic happens, whether it be loss of a job, a pet, a loved one, we grieve. We go through the steps - maybe in order or maybe we jump around them. Boy, am I jumping these days.

I know we haven't lost Charlie - he is very much with us, so please do not think I feel that way. But when Charlie first got sick, I think that because of my own personal situation, I was one of the first to accept his diagnosis and outcome. Not because I wanted to, but because I had to. As difficult as it has been to go from seeing a perfect smiling baby one day, to a deaf boy who works hard to swallow and regulate his temperature a few short months later, I accepted it. I tried to move on and help those around me to accept it too. But lately, I have been mad about it. Questioning the fairness of it. Trying to understand why it was necessary. Crying over the milestones he won't reach with my babies... For the record, I believe Charlie was always meant to get meningitis and be the sweet boy he is now with a brain injury. But lately I have been so wrapped up in myself and my feelings about it that I have had a hard time with the acceptance.

Enter my point: Opposition in all things. We have to have bad things happen to fully appreciate the good. And the good we have seen - we continue to see every day. From family, from friends, from perfect strangers. I don't know how Jimmy Wilson came to know of Charlie and to deeply affect some of us close to Charlie, but he did. We didn't know him until about a month ago. He wanted to be involved in the 5K race and decided to make the wristbands for Charlie as a little fundraiser. Rob and Angel got to meet their family at the race. Jimmy wrote an email to us the other day, and Jimmy, I hope you don't mind me sharing pieces of it. He mentioned that he wanted to help and after much prayer he decided the wristbands would be a way to help. He shared that he believed that there are some elect people who chose to have "challenges" on this earth to benefit others and help others in their progression. And I think he's on to something... I agree with him that Charlie is a "perfect spirit so strong that he must have been something before coming here".

For the record, I believe the Wilson's have helped in many ways beyond the bracelets. The bracelet for me has been a tangible reminder for me of my sweet nephew...of the good of others...that I need to get over myself and serve...to enjoy today...of the way my life has changed in the past 4 months. He made the bracelet's the same colors as the race shirts - silver and burgundy swirled - burgundy represents Charlie's original diagnosis of Meningitis, and the silver represents Charlie's brain injury as an outcome.

SO back to the logistics we are... People have been asking how they can go about donating to get a bracelet. We have about 100 in Large, Medium and small (kiddo) sizes, each in limited amounts. If you would like bracelets, email Charlie's new hotmail account (charliecooperchristensen@live.com) with the following information - Your name, bracelet size, and mailing address. We will mail them to you as close to the sizes you request as possible. You can donate to his paypal account or bank account - that information is on the side of the blog. Thank you to those who donate, and thank you again to the Wilson's for the gift you've given us and your sweet humility... and hopefully for not being too embarrassed or upset with me after this post.
-meghan - charlie's aunt

When A Sick Boy Gets Sick...

2008-05-26T00:54:00.004-06:00

Realizing current pace of posting on this blog has slowed even to the point of becoming inert, I personally apologize for this infrequency and will make an effort to invoke a certain urgency hoping to make posts more compulsory. It has been some time since we actually updated on Charlie’s condition so I will strive to keep this post entirely on point and tangent free.
The inevitable has happened with our boy and he has taken ill. Nothing severe but nothing that is making life any easier. I believe that according to our rudimentary understanding of modern medicine he might have a touch of the flu. A condition you may have heard of that one need not be overly qualified to diagnose. In my experience if you are holding a small one and they begin to heave insomuch that gastric juice is eructed on your person it might be safe to say that some gastro-intestinal distress is occurring oft caused by any number of Influenza type viruses. Sufficed to say Charlie is experiencing this frequent emesis. Grandma Cheryl can attest as she was, this weekend, turned into Char’s personal burp cloth, thrice. The issue that is marginally unnerving is that Charlie still hasn’t developed the greatest gag/swallow so while he is lurching and giving it the old heave ho he chokes a fair amount and is at times w/o breath. I’d be lying if I said that it didn’t freak me out a little bit and cause some panic but w/ a little repositioning, draining and suctioning he seems to recover well. The unknown is how much of this rejected fluid is finding it’s way into his lungs. Aspiration remains one of our largest fears and it causes us to remain cognizant of his every breath. It is increasingly arduous to get any quality sleep when you are constantly watching the rise and fall of your little boy’s chest.
Aside from this current affliction Charlie continues to do well at home. Of course he has days both good and bad but a trend of more good days is slowly starting. We are trying to get him out on regular walks around the neighborhood not only to get some fresh air but also remedy his “Casper the Friendly Ghost” like complexion. Going w/o the sun for 4 months has left him w/ a pasty like tone that makes his mothers legs look ebony. We love having him home and I love having a snuggle buddy and a perfectly appropriate excuse to sit in front of the TV for hours at a time. Neurologically his condition remains somewhat the same. His only real purposeful responses are to pain or discomfort. We continue to hope that this will improve.
Thanks again for all of your continued support and huge kudos to Troy for putting together the race videos. I am of the school that his videos are the coolest things on this blog and hopefully I can milk him for a few more in the future. Troy is a true cinema graphic technician and only if I had the early Lake Powell videos you could experience the full gambit of his expertise. Strong work Doyt.

Get the Kleenex!!!- Thanks TROY

2008-05-22T11:03:00.006-06:00

Troy has spend a lot of time compiling TWO wonderful videos of the pictures that were taken at the 5K race. Everytime I watch it I tear up. I am still so in awe of how many wonderful people came to support us last Saturday. All I can say is... WOW! Thank you again for coming and thank you to Troy for capturing the spirit of the day through the video. I will always remember it! Love you all--Angel

HINT: Two ways to watch the below videos...

1.When watching the video's below, you can avoid stoppage if you start it then pause allowing a few minutes for the video to fully load.

2. If you have Real Player, a tab will pop up above the upper right corner. Click on that and you can download the video.

3. The best way to view it is to only have one youtube frame showing on the monitor.

Charlie Steps- Part I

2008-05-22T11:00:00.000-06:00

Charlie Steps-Part II

2008-05-22T10:59:00.000-06:00

WOW !

2008-05-19T12:50:00.002-06:00

Charlie, Britton, Angel and Rob want to thank you all for helping us have such a wonderful race. How cool was it to see all of you out there in your Charlie T-Shirts, all 333 of you. We know there were those of you who were unable to make it and we missed you but know that your heart was with us. When we arrived Saturday morning what an unbelievable sight it was to see you all there smiling and happy. Many of you with kids that at the early hour must have been no small task getting them prepped for the event and many of you had traveled great distances to come and play with us. Thanks to all of you. I have no doubt that Charlie loved it as well. I only have one regret from the race and that is that Angel and I didn’t get the chance to meet and thank all of you. Some of you who we only know from the blog did come and find us and introduce yourselves and for that we are extremely grateful. I hope that all of you had the chance to at least see Charlie and experience the profound effect he can have on a person. We wish that we could of spent more time with all of you and we could get to know you better. You are all such great people.

As far as the actual race is concerned I’m not gonna lie, Charlie and I cheated. I mean we cheated bad. Per the previous post where Meghan said that we did a quarter lap but that was probably a bit too generous. Admittedly Charlie wasn’t there to race, he was there to see you all. So after several short cuts we were the first stroller to cross the finish but surprisingly enough quite a few runners were already there, most notably a couple of speedsters from UVSU who had a cool little gift for char. Thanks guys. It was neat to see the rest of you come across the line, granted some were a bit quicker and less lathered up than others but it looked like everyone was happy. All this fun and for such a great cause, the BIAU, who in putting on this event provided not only an avenue to raise a few bucks to help out those w/ broken noodles but more helpful for us was it gave us a way to see you all and burn a calorie or two. And trust me, some of us could stand a few more 5k’s in our future, like maybe everyday in our future. Take no offense as I am in need most of all considering I tip the scales at approx. the same weight as an outdoor defecatory platform made of bricks. That being said I hope that this won’t be a one-time deal. We are already planning on next year and would love to see you all there again.

I want to say thanks to a couple of new friends we made at the race. The first was a little boy named Hunter, who while having issues and challenges of his own he and his super kind parents came out in their Charlie’ shirts to support my Super Cooper. Thanks for your support guys, it was great to meet your little man and I continue to covet his totally sweet camo-chair. Next is Jimmy, what a blessing you have been to Charlie and our family. Many of you probably don’t know Jimmy and before the race Saturday either did we. Jimmy was a stranger who like many of you kind of stumbled upon Charlie’s story and I guess like most of us, was affected on some level by him and his travails. Unbeknownst to Angel or I, Jimmy had been working w/ my sibs and made up a bunch of the maroon and silver “taking Charlie steps” wristbands as a way to help raise money to help us pay for the 39 syringes and other more trivial costs, like Dave Duzy’s salary for the last 3 months. Not only did Jimmy go through the struggle of dealing w/ my fam but he paid for the wristbands out of his own pocket and got his place of employment to match the donations given for the wristbands. All he asked for in return was if he could have his picture taken w/ Char. True generosity. Thank you to Nikki and your Piper friends. Thank you Lambert for your camera and your time. Thank you Celeste and Scott for the shirts and tolerating my sisters. Thank you to my family for being civilized and tactful whilst conducting your preparations. Thank you Chris and Chad for providing sustenance. Thank you all for your selfless generosity, from the Woolstenhulme’s to Bubba Jed, you are all in our prayers and we thank you for keeping Charlie in yours. Thanks to Charlie for being so strong and brave and helping us all see what is truly important in life and bringing us together. Most importantly thanks to the Almighty for continuing to send good and kind people here to earth who care about things other than themselves and restoring one man’s faith in humanity. So thank you to all you good and kind people out there, thanks for everything.

Little Picture Update

2008-05-19T12:36:00.006-06:00

Here's smidge of a picture update until we get the race pics organized.One of Charlie's girlfriends, Whit.

Charlie's daily dose. Some of those he gets 4 times a day.

Granny helping Charlie with a little pacifying.

BIAU 5K

2008-05-18T10:33:00.007-06:00

We had a GREAT time at the 5K yesterday! There was a huge turnout and the Charlie Fans were represented in the gray shirts - we were everywhere, and it was awesome. Charlie & his family got to see family and friends, and meet a lot of new friends. He did great in his stroller and actually was the first to cross the finish line... who cares that he only did a quarter lap! Thanks to a few excellent photographers, we have several hundred pictures, so we will have a video slideshow of those pictures soon.

There are several people who we need to thank for going above and beyond - Celeste at Salcorp for donating the t-shirts and being very patient with us, Scott Collett Design for donating the artwork for the shirts, Jimmy Wilson (not sure where we got Matthews) and crew for making awesome reminderband bracelets (more info to come on those), CH Bagpiping for a special start to the race, Firefighter Lambert for taking 524 photographs, Chris McKay for donating hundreds of bottles of water for the racers, Chad at Little Debbie for donating all the granola bars for the racers, all of our t-shirt deliverers, and Candi, Lindsay, Angel, Suz & Cheryl for providing the snacks for our littlest racers.

Thanks to everyone who was there - or there in spirit. It was another awesome and overwhelming experience. Charlie is an amazing little boy who is loved so, so much.
meghan - charlie's aunt

5K tomorrow!

2008-05-13T17:01:00.004-06:00

Hey everybody,
The BIAU 5K is on Saturday at 8am. We are so excited for this event and can't believe the turnout supporting Charlie. We have talked to the people at the BIAU and they plan to stop online registration tonight... So, if you haven't registered but plan to run, register tonight at http://www.biau.org/ or you may be out of luck. The BIAU is a little overwhelmed having been inundated with so many Charlie fans - there are over double the amount of people this year than ever before!! Here are a few details about the race for those who've registered...

Liberty Park is located at 600 E. 1300 S. in SLC. The race starts and ends at the south east corner of the park. They ask that you use the south entrance. Parking is limited, so please carpool if you can. The race will begin at 8am, but you have to get there early enough to park, get your race apron and race t-shirt. If you signed up for a Charlie shirt you will be receiving those in the next couple of days. We want to have a picture taken of all of Charlie's fans before the race because we will lose people if we try to do it afterward. So, please get there early enough to park, check in and get your stuff and be ready for a group photo at 7:40am. We will only take the photos with one camera, but will make those photos available electronically.

Charlie plans to be at the race and is very excited about all of his friends being there to support him and his family. We would ask that you please be considerate of them and try not to overwhelm them or overstimulate him. He is also still trying to get used to the germs at home and from his family, so we would ask that you not touch him as it is risky for him to be around so many wonderful and random people.

Again - we can't thank you enough - those of you donating the shirts, art, water, time, etc. and those of you supporting this wonderful little man by running and walking for such an important cause to us. You are all heros to us.
-meghan - charlie's aunt

Coop and Trisha :-)

2008-05-10T00:38:00.005-06:00

When I decided to come over last minute to spend my four-day off work with Cooper I didn't think that I'd be trapped in by the duty to post on our little superstar's blog. Anyhow, I did manage to get out of the state without doing so and back to Colorado, but my family guilt prevails and I know that before I go back on shift in the morning I must post of my incredible time with Charlie and his amazing family.

I hadn't been able to come over to visit during the time Coop was on holiday in the PCMC suites due to school, fire academy and work. It was hard being so far away and not being able to "help" with all that my amazing family did during the last three+ months. Rob and Angel were generous to a fault (again) and offered me some travel vouchers they had to come over. It was a last minute plan and yet nothing could have been more perfect. Thanks Rob and Angel for being such amazing people!

During the last four days I got to experience first hand the bumm-patting that must not end. Cooper knows what he likes and has no intention of letting his holder slack off. I learned all of Coopers meds, routines, bathtime, dressing changes, feedings (and to be absolutely certain that all the caps are on really tight), venting, and positioning fairly quickly and was able to take some of those tasks over for a couple of days. Cooper, Britt and I spent some time alone together while mommy ran some errands and we even got Rob and Angel to go out on a proper dinner date! We had big plans to go for some good walks but the weather had different plans and brought rain nearly each day. We'll get those walks in on my next visit in June.

I know that you all have some idea of what an incredible person Angel is, but you have no idea how organized she is with Charlie's care and with what simple grace she glides through her days. In addition to caring for Charlie, she manages to dedicate quality time to play with Britton; playing hide and seek, race-cars, shooting of various weaponry, computer learning games and more. She is on top of everything, has a clean and tidy house, laundry is always done, appointments are made, errands run, everyone is fed and she never loses her bright smile through it all!

Rob, Angel, Britt, and Charlie... Thank you so much for allowing me to share your gorgeous new home, your positive outlook on life and all that it brings, your glimpse of fame as a "Wasatch Woman", your massive bag of Cinnamon Bears (damn them!), and most of all the truest little angel I've ever known...Charlie.
In early January I was in town and spent some good time with all of my fantastic family. Charlie and I played lots at Grandma Cheryl's house, played peek-a-boo, bounced, and we ate lots of dinner together. Charlie is a huge fan of food and the best little eater ever. his smile would brighten a room no matter how large and he was the happiest little guy in the world. As sad as it was initially to see him lying so locked up deep inside, it's not so terrible in reality. Charlie is still the sweetest little guy in the world, I know that smile is still in there and hope to see it again sometime soon. I loved my time holding him, soothing him in whatever way I could find, talking to him and gazing into those bright blue eyes. My very favorite time with this little angel was after Rob and Ang had gone to sleep at night and Coop and I had a few hours to ourselves. He would get so upset, have a hard time being soothed and we'd end up lying side by side on Britton's bed, with Charlie cooing and me patting him and talking to him about all kinds of things until he calmed and could go to sleep for the night. I am certain that he knows how loved he is and perhaps he can even hear what we are saying or see us loving him. He is a remarkable little spirit, has a big brother who adores him, dotes on him, and loves to help in his care, two of the best parents any child who wish for, an extended family who'd do anything in the world for him, and an endless network of friends across the globe that continue to pray for and cheer him on.

I know that I'm a better person for having spent a few days with Super Cooper and have a renewed sense of exactly what is important in life.
I love you Coops!!!
~Aunt Trishie

Thanks Sport.

2008-05-09T14:02:00.002-06:00

Trish (sister of Rob) just left to the airport to fly back to Colorado. She has been with us for the last four days and has helped us out immensely. Angel and I so thankful and well rested. Trisha has promised to post later today about her days here w/ Char so we can all wait w/ baited breath for that epistle. Thanks Trish.

Who Is The Super Nice Person?

2008-05-07T01:22:00.004-06:00

All right folks, I can’t stand it anymore. The gnomes in my dome are going crazy with something I just can’t get a handle on and I am soliciting all in blogland for your help. First of all I think that it is meet that you get updated on my sweet little boy’s last few days before I bother you all with what may seem benign trivialities but in my world find appropriateness as a vexed obstacle. Charlie is a champion. We’re slowly getting better with the administration of his care even to the point I was found bragging about the streamlined capacity and competence in which I am able to provide that care. That was, however, all well and good until this morning when I woke at 0600 to furnish required meds for Char and proceeded with the 0800 schedule and completely air balled the 0600 schedule. Gave the meds, thought nothing of it, and by some omnipresent act of luck the egregiousness of my error came to me just in time to stop my wife who was about to give the 0800 dosage and stopped what would have been a double/over dose for our little hero. Karma. She, with hardly a whinge acknowledged her husbands gross incompetence, gave the 0600 doses in lieu of the premature 0800 meds and by no help of his father Charlie is well. His mental and physical condition is largely unchanged since we left the hospital with his best hours coming at night (thank the Almighty) and his days full of bum patting, pooping and irritability induced squeals that at times are only audible to Champ (the dog). He still is super handsome and when I hold him and he is content I swear that he’s looking at me. I just wish they had a test they could do to tell us if his peepers are working and really why can’t they? I saw on the tube today that they can wipe a ducks rear end and determine its country of origin but they’ve yet to develop a way to test eye sight in uncooperative infants. Travesty.

Lest we digress there is a mystery in the House of Char and I need your help. Saturday morning a most unbelievable gift was dropped at our front door. Some selfless saint of a person has completely restored my faith in humanity. Throughout this experience w/ Charlie I am continually impressed by how many truly good and kind people are out there and Saturday was no exception. Someone out there canonized our blog and anonymously delivered it to our home. Understand, this gift is a compilation of every lame and blathering post that has been put on this blog, every picture and the compliment of all the priceless comments you have all added (In my opinion the comments are the only thing worth reading) bound in journal like fashion page protected and all. But here is the kicker, on the first page of volume one this nameless individual included a hand drawn picture of Charlie that if nothing else caused a grown man to weep like a little girl. It is a spectacular likeness and a gift we always treasure. Thus my issue, I want to thank you. I want to shake your hand and let you know how grateful we are for not only this gift but for the hours, energies and assets spent on its construction. Admittedly I am a proud man but not so proud that I can’t or don’t realize when a debt of gratitude is owed. Thank you for thinking of our family and caring enough about Charlie that you would provide this gift for his parents. It will always have a place in our home. Now someone out there has to know who did this and I want to know. Maybe you were in on it, maybe a little bird told you, either way it’s time to let the cat out of the bag. Credit should be given for such an undertaking. The floor is yours, talk amongst yourselves.

SUPER B-day Bash :)

2008-05-04T17:22:00.018-06:00

So after a week of hanging out in exotic locals i.e. Blackfoot, Dubois, Dillon, Navy and Montpelier I was quite excited to return home and see how the new life of having a chronically ill child would be. I missed my boys and the smok’in hot mom that takes care of them. Charlie is in great shape, considering, and Angel reeks of brilliance. You’d never guess that she was the one that was hesitant while still at PCMC to bring Char home. She has this whole 24/7 care stuff down pat, charts and lists and alarms and schedules and all without any apparent twist in the knickers. I had both boys Saturday morning for a few hours, ALONE, and long story short it went off like a fart in church. I don’t know how she does it or how any of these rare breed of mothers in similar care situations do it for that matter.
I didn’t think that I’d be the one to say this but I miss the folks at NTU. Not merely for the top notch care that we received but also the friends we made. I know some of you up there are blogstalkers so when you read this spread the word that Charlie’s dad said thanks and he was totally bummed that he couldn’t be there to say good bye in person this last week but somebody had to go to work in order to pay their salaries. No work = no insurance and well we know that that dog just won’t hunt. By the way, tell Judy and Dear Joe that you all need raises, big ones, except Dave and in that case his tech should get double. We know who does the heavy lifting. Now if you are at work, get off the computer and go save lives.
Now that things are getting settled here’s the word according to Rob on why it sucks to have a kid in the hospital.

1. Duh! Your kids in the hospital.
2. Driving back and forth from home to hospital and vice versa.
3. Rainbow Café.
4. IHC cable tv.
5. Having to bug Ramon for slushies.
6. Naugahide couch/bed’s.
7. Duzy’s sense of humor.
8. Battery Boy being clueless.
9. Randa doesn’t work every day.
10. Neale and Janine only come once a day and think they need weekends off.
It would only be prudent to also include an itemization of positives since returning home as far as I have deduced them.
1. Duh! Your kids not in the hospital.
2. Sleeping in your own bed, next to a super hot lady.
3. Don’t have to worry about where Britton is all the time.
4. It smells way better here.
5. No more Nauga’s will die for our comfort.
6. You can see outside.
7. It doesn’t take ½ hour to park.
8. Unbelievable acts of kindness from strangers.
9. Charlie not getting bugged every 2 hours for vitals and random checks.
10. It’s about 3000% cheaper to be home.

Last night the Christensen house was bumpin for Char’s birthday party and I’d like to kindly thank the neighbors for not alerting the authorities when things got out of hand and the techno got too loud. We had a great time even if it was just our small mild mannered family that thrives on respectability and tact. Charlie got a whole new wardrobe, all of which is very G-tube friendly. You see our little man isn’t so little any more and whilst in the hospital he has skipped a size so he was looking a little homeless for a bit but no more. All new duds that I’m sure over time you will be privy to through upcoming pictures. Angel had the party all Super Man themed and a huge cake with the Super Man logo and it said “Happy Birthday Super Cooper.” He slept through most of the party due to some professional bum patting. The whole fam is getting rather proficient w/ the old booty slap leading me to believe that some may have some prior experience. Anyone willing to fess up?
Here’s some pic’s I am keenly aware that you’d rather see them than continue to read my uneducated blather.

Family Picture

Clark Kent and Superman or RyRy and Britt

Getting his 8:00 Meds

Everyone got birthday cake except the birthday boy. He had delicious meds.

Aunt Susie

HAPPY BIRTHDAY CHARLIE !!!

2008-05-03T14:53:00.002-06:00

The big man turns uno today. We'll post some pic's later of his rage'in party tonight and update you all on how great it is to be home. Thanks for the continued support.

We're home :)

2008-05-01T12:42:00.003-06:00

Turning on the cochlear implant. It took 2 hours for programming and teaching. Dr Such-Neibar stopped by because she was expecting him to be more irritable but we didn't see any change.
Testing the car seat to make sure it supports his head. When we came in to the hospital he was in an infant carrier but since he has grown we needed to upgrade

Coop was so sad to say goodbye to the "baby whisperer" Janine
Goodbye Shannon- We will miss you
Rob had been looking forward to taking Coop in the wagon ride ever since we got here but we never made it so I had to use it to take him to the car just for a picture. Daddy- Coop has missed you this week.
Britt woke up from his nap and was really excited to see his little bro was home. He immediately went and got a stuffed animal for Charlie and placed it in his bed and then tried to tickle his toes when he was fussing. He's going to be such a great big brother.Sweet dreams.

Coop has done fantastic since yesterday morning. He has had several hours where he has been awake and calm. He slept the whole way home and was great pretty much all day. The home health nurse came by to set up the feeding tube and assess him. She said everything looks fine so we probably won't need to see her again. He is also set up to go to speech therapy, physical therapy and occupational therapy once a week. We go back to see Dr. Such Neibar in one month and will get the g-tube changed to a smaller button at that time. Last night it took me 30 minutes to figure out the 8:00 medication but luckily I have already gotten better. Charlie did really well throughout the night and today with only a couple periods of fussiness. I am loving having him home again!!!

Last Day :)

2008-04-30T11:07:00.001-06:00

This morning has been a whirlwind. Charlie threw up again last night at midnight, the exact time he did the night before. It was after being off of feeds for hours so I haven’t really found a connection yet. We’ll see what tonight brings. This morning we went up to the audiology department for 2 hours to program the implant. He slept the whole time so the audiologist programmed it to average comfort zones. We are supposed to experiment with 3 different programs and different volumes over the next two weeks and meet with him to reprogram. The process usually takes 6 months to find the correct program with a healthy person so Jason thinks Charlie could take a year to find the right parameters and teach his brain to recognize it. We are looking to be leaving around 1:00 this afternoon. I will definitely keep posting about our transition however it will be less frequent so please be patient while we figure out our new normal. Thanks again for everyone’s support and love. We rely on it daily!!!

GOODBYE PCMC. We will miss you!!!

2008-04-30T11:01:00.002-06:00

Last Night at PCMC :)

2008-04-30T10:53:00.000-06:00

Well, as I sit in the hospital for the final night I have a bitter sweet feeling. I don’t think it has hit me that we are actually leaving. My car only knows how to get to the hospital and home anymore. We have been looking forward to this day since we came into the hospital and now I hate to leave even though I have been well prepared. It’s like the training wheels have been taken off and we are now supposed to ride by ourselves. The freedom will be great but I liked the reassurance of something to fall back on.

I have been a little crazy lately with getting all of the last minute things figured out for our return home so I haven’t posted much (or returned phone calls- sorry everyone), but not much has happened with Coop either. He has been pretty well behaved today and even slept through his bath. He has had a lot of his new friends stop by for some last goodbyes. Everyone is so sweet! I feel such a strong bond with the people here because they have helped Charlie get better and I can feel the love they have for him.

To everyone involved in Charlie’s care at PCMC. THANK YOU!!! And WE LOVE YOU!

T Minus 1 day!

2008-04-29T12:59:00.003-06:00

Coop is having a nap right now while Meggie is doing some rocking. He has had some PT this morning in his room in an effort to learn to live without the gym. Last night our little man was able to hurl (threw up) to the end of the bed so Auntie Susie is going to get a bath on the afternoon schedule. Grandma Kathi reported that his tummy has been a bit rumbly today so we are grateful for the venting tube. The goal is to blow this joint tomorrow afternoon, but we aren't going to get too excited yet as Super Cooper has a way of doing things his way!

Thanks for all the prayers and support. Keep your fingers, toes, (and maybe eyes) crossed that all goes as planned.
--Auntie Susie

The End is in Sight :)

2008-04-28T10:34:00.003-06:00

He had another good night and has been awake for 2 hours and is semi-content. Our plan is to start getting everything in order for discharge on Wednesday afternoon. We have ordered more of the venting g-tube bags so hopefully they will arrive by Wednesday. The ear surgeon came by and said everything looks good so we are clear to turn on the cochlear implant. We will meet with the audiologist on Wed for the programming. We are also having the eye doc come check out his vision before we leave so we know where we stand. We are excited to finally have a discharge date!!!

3 month Anniversary :)

2008-04-27T13:05:00.004-06:00

Today Charlie has been in the hospital for 3 months straight. Here are some pictures to compare. He now weighs 24 lbs (19.4 lb when we came in) and is 29 1/2 inches tall.

3 months ago this is how Charlie looked. An IV in every limb, breathing with a vent and not doing any voluntary movements.

This is how he looks today. Only 2 tubes and 1 will come out tomorrow

IRob is not allowed to be by Charlie because he has a cold. He hates it, but maybe I can convince him to post from home but in the meantime I'll update (Angel). Charlie had a great night, only waking up once at 4:00am. He is now fully titrated over to the g-tube (all of his formula is going in his stomach) so the tube in his nose will probably be removed tomorrow. We will keep him on continuous feeds even after we go home and then down the road we will try bolus feeding (feeding all at once like meals). I haven’t seen any liquid or air in the bag yet but he is tolerating his feeds well so the venting tube must be working. Rob bought Coop some flavored lip smackers (chap-stick) to encourage positive feedback for sucking his lips. He seems to like sucking on his bottom lip.

Susan and John spent their "date night" visiting with Coop!Cami Poulson Lane (married Rich Lane). Rob and I went to school with Rich. Such a small worldLouie & Rodrigo- the coolest kids in PCMC. They have races down the hallway in the middle of the night and Rob is often found in Louie's room playing guitar hero until the wee hours of the morning. We will miss them.

Since the weather is so nice today we went outside for a walk to let him get some fresh air. Charlie hasn't been outside for so long and he really seamed to like it. By the fountain in front of Primary Children's Hospital

I saved this picture for last because it was my favorite part of today. When he was basking in the sun his pupils reacted and became the same size as mine were at the time.

A Day at the Gym with the Christensens

2008-04-26T09:46:00.013-06:00

Britt thrilled to hang out with his little brother.

Rob desperately trying to teach Britty to balance...

and teaching him the ways of killer ball.

Britty only gets to play "hard" with daddy.

He loved playing on all of Charlie's rehab equipment and especially loved trying to crash into Grandma on the bike.

Coop was not hating the stander!

Britty being attacked by the tickle monster.

We know who is the better looking of the Christensen men!

Angel power lifting her big boy.

Beautiful baby boy

It might be working?!?

2008-04-26T08:41:00.005-06:00

Mom and nurse Becca after the Farrell Valve was connected.

They hooked Charlie up to the vent tube about 5:00 p.m. last night. They started by having 40 cc's go through the NJ tube and 10 cc's through the GT tube which sends the formula into his tummy. The red extensions of the tube sends formula to his tummy or problematic stuff up to the vent. I was worried that he would have a tough night since he hasn't had food in his stomach for a long time. Good ole Char is doing fine. He slept from about 11:00 - 4:30 and has responded to the bum pats thoughout the morning. Right now he is getting half of his feeds through each tube. Holding him is a challenge since there are loops of tubes all over. All in all, he's having a good morning.
G-ma Cheryl

It Arrived :)

2008-04-25T10:03:00.003-06:00

Coop had another possible seizure last night while Jared was rocking him. He gagged a little, immediately started sweating, eyes were wide open with a blank stare. It only lasted 5-10 seconds and then he was back to fussing. Neurology said he is already on 4 seizure meds so they aren’t going to change things unless they become problematic. Other than that, things were fine again until 2:30 when he woke up crying and could not be consoled until the Motrin kicked in at 5:30. When I talked to Dr. Such-Neibar this morning she was unaware that it could take 2-4 weeks for the tube to arrive so we made a plan to try to get everything in order to go home next Tuesday. We have an out-patient appointment with Dr. Warren(surgeon) and Dr. Norby(audiologist) to turn on the cochlear implant next Wednesday so she will try to move that to Monday while we are still here. Then an hour after we made these plans to go home guess what arrived…. the venting g-tube. Becca, our nurse, is finding out how to connect it right now.

PS to Troy=Rob is coming back today so he should be posting the whole weekend. I think I look forward to his posts more than anyone.

In Limbo

2008-04-24T14:49:00.003-06:00

Grandpa Brian said last night went really well. Charlie fell asleep around 11:00 and didn’t wake up until 5:30. The nurse assessed him and then Charlie took a nap in Grandpa’s arms for a couple more hours. He didn’t have any more seizures and we still haven’t received the venting g-tube so it looks like we will be here at least throughout the weekend. Im getting bits of the story with the tube. I guess the hospital does not stock this item, possibly because it is new or rarely used and they would need to buy a case of 30 which is $500. Currently the hospital only needs two (one for Charlie and one for another pt in the PICU) so they have asked for 2 samples to be sent. Dr. Jackson called Material Management on Friday April 11th. Materials department called the floor on the next Monday to verify to order it and were told we no longer needed it. A few days later it was realized we were in fact waiting for the tube and it was ordered either Thrursday of Friday last week. Now for the kicker...it takes two to four weeks for delivery and there is no way to track it!!! So if that is true the soonest we would expect to see it would be a week from today. I'm not sure that Terry Such-Neibar realizes this part of the story because she told us Monday that she expected it to be here Wednesday. When I see her in the morning I'll try to clarify everything and get to the bottom of the story.

Since stopping the Miralax yesterday Coop has been crying less and sweating less. Maybe now that his sweating has decreased we can start dressing him. We just got back from PT where he was pretty upset so he didn’t do very well at trying to lift his head. Because he was mad already we tried the stander again and he was bugged but not totally ticked off. That has been our day so far.

last chance

2008-04-24T09:36:00.002-06:00

so it's your last chance to sign up for shirts for the Brain Injury 5K May 17th. click the link on the right side of the page to make your requests. I need to have all the requests in by Sunday 4/27. And don't forget to go to www.biau.org to register for the race. we're excited about the race all of the support you've shown. -meghan

Sweet Potatoes :)

2008-04-23T16:54:00.006-06:00

The day was better than last night. He has been relatively calm and very responsive to the bum pat. Yea! This morning we went with Janine to physical therapy/speech therapy. He tried a small taste of sweet potatoes with the same technique as the pudding yesterday. The fact that he didn't clamp his mouth closed is considered a positive sign. He is not opening his mouth and swallowing like a normal kid but when the therapist's finger is in his mouth with food on it he investigates it with his tongue. Because he hasn’t passed his swallow study we are limited to giving him a taste of something once a day. Janine said he is holding his head up a little again and is calmed with patting his bum, lips or chest.

Dr. Brockmeyer, the neurosurgeon, came by to let us know he looked at the CT and there are no changes. So there is not a good explanation for the breakthrough seizures. I also should have been more specific on the CT results from yesterday. I said they were normal and that is not necessarily true. Charlie’s brain will never be normal. I should have said “the shunt is working normally” because there is not any increased pressure in the ventricles. The CT looked like the previous scan – no change. Dr. Henrie stopped by on his way out and told me that Charlie’s seizure medication level is within therapeutic ranges so we will probably not increase his medication at this time. He also talked to neurology about the episodes and they feel the seizures are probably partial-complex because of the eye twitching. Either way they were not too excited about them and if they happen again we are to give Ativan to stop them and then check the level again. I told Coop that he had to continue to behave for Grandpa Barlow tonight.

Since Charlie has become a celebity he has had all of his cute girlfriends come to visit.Andrea and Ashley

Andrea and Jada Rose

Up Late :(

2008-04-23T01:23:00.001-06:00

Roxey came to hang out with me at the hospital tonight and was on “bum pat” duty just after Jared left (around 11:30p). Charlie opened his eyes with a wide-eyed glassy blank stare, held his breath, limp body except for a single near lurch and pooped at the same time. He had beads of sweat immediately rather than his usual working up to sweating. This lasted for about a minute then he got a little agitated but calmed with the bum pat. We moved him to the crib to change his diaper and then got him comfortable on his side in case he threw up. Then his left eye started twitching to the left (nystagmus) for a few seconds and then stopped. His body never jerked or stiffened throughout any of these and vital signs remained normal (BP114/67). He had a couple more episodes of left eye twitching and one more episode of blank stare without blinking and then fell into a deep sleep (post-ictal). My impression is that it was an absent seizure. The whole series of events lasted less than 30 min. The doctor was paged and he approved the seizure dose of Ativan to be given but by that time Charlie had stopped so we opted not to give it. He is currently on 3 seizure drugs (although one isn’t being used for seizures) and they were given at 8:00 so I think we will be seeing Dr. Filloux (neurologist) tomorrow for another consult. Charlie has had seizures two other times during this hospitalization- first in the PICU when his brain was so swollen and then second when we had just transitioned to the neurotrauma unit 2 months ago. Both of these first episodes he was jerking and stiffening his body. I guess it’s a good thing we are still in the hospital. If we had been home we probably wouldn’t have been holding him while he was sleeping so calmly.

Morning Update: He slept from 12:00-5:00 and then was irritable due to gas. Dr. Such-Neibar and the resident Dr. Henrie came in to get the details of last night's events and tell me the plan. They will notify the neurologist and draw a blood level to see if his medication is high enough. She will also talk to neurosurgery about Charlie's brain CT from yesterday. It looked the same as before (ventricles are still huge, but not under pressure). Charlie is a little confusing to them because he is improving in certain things-controlling his head a little more, sucking, opeining eyes more- but degressing in other areas-agitation, seizures. Dr. Such-Neibar said that is not normally the way brain injuries go. But when has Charlie ever gone about things normally?

Sorry it took so long to post today.

2008-04-22T15:16:00.016-06:00

As was said before, today started out pretty rough. Coop woke Jared up at 5 am with a scream that took a long time to stop. They tried every medication but Ativan and both the nurse and Jared tried the bum pat without benefit. The rest of the day he has flucuated with mostly agitation and some times of being content. His food has been digesting fine since we started the new formula and he shouldn't be refluxing since the feeding tube goes into his intestines. The team came in this morning concerned that he is having more periods of fussiness despite the fact that they increased both the neurontin and tranxene in the last few days and his bowel seem to be working fine again. One thought is that the Miralax may be causing stomach cramps and increased gas- which we have been noticing. So, tomorrow we will change the Miralax to a more mild laxative. Also, to cover all the bases, Charlie was sent down to radiology to get a brain CT to make sure his shunt is working properly because the increased pressure in his head could explain the fussiness. (Results came back as normal brain CT :)) The word from GI is that we should be recieving the venting g-tube tomorrow. I am told that it was re-ordered on Monday. Amanda Butterfield, Chris-the cameraman, Rob and Coop

Anni, Megie and Stephanie- Our supporting fan club

REHAB UPDATE:

Neale noticed yesterday that Charlie had started sucking a little so we tried a binky again. He sucked on it a little but not as much as when nothing was in his mouth.

Trying to get him used to different positions. He hates transitioning from one position to another.Neale found that patting his mouth has the same effect as patting his bum. When agitated he just melts and relaxes. I guess there are a lot of nerve endings around the mouth as well.Due to the increased sucking yesterday, Courtney, a speech therapist, said that may be a sign that he is interested if food. So today was pudding day for Coop.She put pudding on her finger and then pushed against his gums. He liked the gum pressure and did swallow some. The swallows were delayed and intermittent but it is a good sign that he didn't hate a flavor in his mouth after all of this time.

Not such a great morning

2008-04-22T07:24:00.001-06:00

Well it sounds like coop had a good day after such a hard long weekend Angel said he was great and slept most of the day. He was awake when I got here but not for long. after his eight o’clock meds and a long day on the news and being famous, he was out. He slept great till about five this morning and hasn’t been so happy since then he has had some of his meds and a diaper change he is still ticked - he must want his mama to come back. but amber is giving him is clonadine now so let’s keep his fingers crossed that it does the trick.

So I just have to say Rob and angel didn’t really know what to think about this whole news thing but I think the same as all of you that they made the right decision. Amanda, I don’t know how you did it but you actually made rob look good. It was pretty neat to sit up here holding Charlie with all the nurses in his room watching his story. So l looked at the hits on his blog as his story started and in the next 45 min there were 1,200 hits so this just proves coop is the man and has touched so many of us, so thank you all for the comments and the support through this whole thing. it means more to our family than any of you will ever know. - uncle Jared

Dilemma...

2008-04-21T13:20:00.002-06:00

Rob and I are fairly private people and so the proposal of TV has been a tough decision. My face turns red every time I think about it. I asked 10 people what they would do in our situation and 9/10 said they would go on the news. When asked why, there were very few legitimate reasons to outweigh the shyness and the invasion of privacy. Rob and I debated that the blog has already exposed us beyond our comfort level but when we hear everyone’s amazing comments we realized how beneficial it has been for us. How can we be the ones to stop him from melting your hearts as he has ours?

I accepted to go on the channel 5 news with Amanda Butterfield although second guessed several times afterwards. Rob has accepted to be silently supportive. Ironic isn’t it that he is so eloquent in writing and quite social in a casual environment and yet so shy in a formal setting. I’m terrified to make a fool of myself and yet reminded of what Susan has said throughout this whole ordeal “This isn’t about you or them, it’s about Charlie.”

I’ve heard that Charlie has affected many people’s lives in a positive way, many times without them ever being in the same room with him. This phenomenon is a little difficult for me to understand because pictures on the blog don’t do him or the feeling justice. I guess what I’m trying to say is that I’ve recently realized that Charlie wasn’t sent here just for Rob and I to learn from-although we have so much to learn- he is meant to be shared. No matter how much I would like to slip back in anonymity he has a story to tell. Although that story may be different for each person following him, he seems to convey all that is good- faith, endurance, peace, innocence, patience, toughness, determination. He has completely changed our family’s perspective and outlook on life. He has made us realize how fragile life is and not to take anything for granted. As I wonder if Charlie will ever smile again I find myself thoroughly memorizing Britton’s smile. I don’t think I will ever know exactly how but somehow Charlie is drawing people to him like a magnet and I guess we as his parents need to allow that to happen. We are so lucky to be a witness to what a small body can do with such a big spirit.

Rough Weekend :(

2008-04-21T10:33:00.003-06:00

Terry wants to know why Charlie always seems to be more upset on the weekends and OK on the days she is here doing rounds. This weekend was really rough. He was so mad for most of Sunday that even the bum pat didn't work. We will hopefully be hearing from GI today and see if the venting g-tube has arrived again.

Not a Good Day :(

2008-04-19T23:38:00.007-06:00

Charlie had a pretty good night but then an awful day. He has been on edge all day and can't seem to settle down. Even the bum pats are not a guarantee anymore. The only change we have made is take him off erythromyacin (yesterday) but he is still having a lot of gas and regular bowel movements so I'm not convinced that is it. The update on the venting g-tube is that the part was ordered over a week ago and delivered but was returned by mistake because the person who recieved it didn't know that we were still waiting for it. So it has been re-ordered and Dr. Jackson should be back on Monday so we are hoping to start progressing again. Visit from John and Amanda

Kelli giving the night-time meds- hopefully to help him relax

No News...

2008-04-18T10:41:00.005-06:00

I know this is getting a little redundant and pretty soon everyone out there in blogland won’t have a reason to check in on us but we still don’t know when we are going home. Dr. Jackson (GI) has been out of the hospital all week and since he is not on call the only one that should contact him is Dr. Such-Neibar. So far they have not connected. As far as we understand Dr. Jackson still wanted to try the venting G-tube before extending his g-tube to his intestines. The venting g-tube was ordered a week ago but has not arrived. So I think we may be here for the weekend. I told the resident that Coop has had an increase in gas and it seems to wake him out of sleep. Since we will be waiting anyway we are going to try stopping the erythromyacin (it can cause stomach cramping) and see if it makes a difference and if Coop can keep his bowels moving without it. I think later today I will put him in his stroller and go for a walk around the hospital. He can be disconnected from his feeds for 4 hours a day. Rob gets back in town today from being gone all week so I’m excited to see if he thinks Charlie has changed at all. When you see him everyday it’s sometimes hard to see the subtle improvements. I wish I had more news/pictures to share but we haven’t had much action. And that’s just the way I like it!

Patiently waiting :)

2008-04-17T10:57:00.005-06:00

Grandma Cheryl said it was a good night. We still don’t have an answer from GI but Dr. Such-Neibar said she might have to go to their office and talk to him directly. The other possibility is we go home and when GI can fit us in we come back for a night. She is anxious to get us home so we aren't exposed to any more hospital germs than necessary. Charlie is doing fine on his new formula in the NJ tube however he is producing a lot of gas that wakes him out of a sleep. I'm not sure if it is related to the medication, the formula or the fact that we are putting the food directly in the intestines, but it seems to bother him. He is gaining weight again and looks so grown up. He has lost the baby look and now looks like a little boy.

Waiting for GI-

2008-04-16T13:14:00.002-06:00

He had a pretty good night, only waking up two times. He had a quick nap this morning after clonadine then woke up with quite a lot of gas. He has been a little fussy while awake but he does calm every time he is held with a bum pat. Today we are sort of in limbo while waiting for GI to make a decision. If we don’t see them today they are supposed to tell Dr. Such-Neibar what they think. The decision is to either try the venting g-tube or go straight to the g-j tube. I think GI is waiting for the supplies to do these options. In the meantime, I got a list of his current med list for those that are interested, see below
Methadone- pain-tapering off over the next 6 weeks
Miralax-stool softener
Zantac- stomach/reflux
Keppra- seizure
Baclofen- muscle relaxor
Prevacid- stomach upset/ reflux
Tranxene- calming, sedation
Erythromyacin- help empty stomach
Neurontin- brain stabilization
Suppository- bowel emptying
Phenobarbitol- seizure
Melatonin- sleeping aid
Clonadine- agitation
Ativan (if needed) agitation

Impressed :)

2008-04-15T22:07:00.005-06:00

So I'm really excited about this news so I thought it needed it's own post. Charlie held his head up by himself for 1-2 min. At the begining of his PT session today, Janine sat him up and he held his head in an upright although favoring the right side position all by himself. Of course, by the time I went to get the camera he was tuckered out and didn't do it as well again but we both witnessed it and were very impressed with him.

Let's Celebrate! :)

2008-04-15T21:17:00.016-06:00

Today the NeuroTrauma Unit of Primary Children’s threw Charlie a going away party in the rehab gym. Jenny and Amy made a special cake with everything Britton had requested (green frosting, funfetti cake, and sprinkles) It was delicious! It was so fun to see everyone that has made such a difference in Coop’s progress. They do these parties on Tuesdays for the long-timers so this is a sign that we will probably not be here next Tuesday. I told the staff that they were secretly celebrating that they didn't have to put up with us anymore.

Britt took this picture of us. We had to move to get in the frame.Amy and Jenny dishing up cake and "Super-Cooper ice cream"Dr. Such-Neibar, Mandi and SteveSusie Charlie's nurse today. She didn't get to stay long at the party because she had to check on Charlie.Britt giving Dave "knucks"They saved this piece for Rob. Do you think it will last until Friday when he gets back?More fun at the party.

Me, my Dad and Coop

Aunt Susie perfecting her bum patting technique