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?


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!!!

Thursday, April 16, 2009

T-minus 1 month

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!!

Monday, March 23, 2009

Memoirs of a Runner

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.

Tuesday, March 10, 2009

Pass it On

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!!!

Friday, February 20, 2009

Smile: Found



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.

Saturday, February 14, 2009

Hell Hath No Fury Like a Fired Up Char!

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)

Wednesday, February 11, 2009

Save the Date

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)

Tuesday, January 27, 2009

Where has the year gone?

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.

Tuesday, January 20, 2009

It's Been a While

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

Thursday, January 1, 2009

Goodbye 2008 - Hello 2009!



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