Sunday, April 18, 2010

Charlie's With Me

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

Monday, March 15, 2010

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


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.

Saturday, January 30, 2010

Update for Rob


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

Thursday, January 21, 2010

New Resolution

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 . :)

Wednesday, January 13, 2010

I Found It...

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.)


Tuesday, December 1, 2009

Prayers for Petey

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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.

Sunday, November 22, 2009

Tuesday, November 3, 2009

Speechless

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....

Monday, October 5, 2009

For Those of You Who Sluffed

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.

Thursday, October 1, 2009

Calling all of Charlie's Angels

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?

Friday, September 25, 2009

A Fighting Chance


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.

Wednesday, September 23, 2009

Day 3 Revisited


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.

Tuesday, September 22, 2009

Random Thoughts from Day 2

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.

Saturday, September 19, 2009

Off to School

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!


Wednesday, August 12, 2009

Sweet!

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!

Monday, July 6, 2009

Coop's 2 yr pictures

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)

Thursday, July 2, 2009

Who's Kidding Who?

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.

Monday, June 29, 2009

Tuesday, May 19, 2009

We are the Champions, my friends...


"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.

Friday, May 15, 2009

Last Minute Info

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

Thursday, May 14, 2009

About the bandanas...

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.

Wednesday, May 13, 2009

It Won't Hurt You.


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.


Tuesday, May 5, 2009

Happy to You!! Coop is 2!

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?


video

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!!!