Having a Ball

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

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

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

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

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

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

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

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

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

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

Knock, Knock? Who's There?

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

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

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

Dr. Visit Update

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

Highlights of the visit:

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


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


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


• Now he is 1 year he should be doing standing exercises to increase the bone density and keep the hips in joint since a normal one year old should be standing. Standing also helps with digestion. She wants us to start by holding him in a standing position for a few minutes and slowly work up to one hour a day. One of the therapists will see about letting us borrow a stander like he used in the hospital. She also ordered a hip x-ray as a baseline so we can compare his hip joints and density later on.
  
  Most of my questions revolved around feeding which was deferred to Dr. Jackson who we met with at 2:30.
  

Dr. Jackson appointment:

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

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

Update on Outpatient Therapies-

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

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

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

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

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

Quick Review of Week Ending 1 June, 2008.

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

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

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

Just a Few Pictures :-)

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

Foxey Roxey and her Mamma.

The SUPER NICE Person... thanks again Ginny!

Roxanne, one of Char's new therapists

Charlie not really loving his therapy

Jada Rose's momma, Andrea

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

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

BOOMER !!!

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

my newest accessory

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

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

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

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

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

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

When A Sick Boy Gets Sick...

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

Get the Kleenex!!!- Thanks TROY

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

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

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

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

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

Charlie Steps- Part I

Charlie Steps-Part II

WOW !

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

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

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

Little Picture Update

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

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

Granny helping Charlie with a little pacifying.

BIAU 5K

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

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

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

5K tomorrow!

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

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

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

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

Coop and Trisha :-)

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

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

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

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

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

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

Thanks Sport.

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

Who Is The Super Nice Person?

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

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

SUPER B-day Bash :)

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

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

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

Family Picture

Clark Kent and Superman or RyRy and Britt

Getting his 8:00 Meds

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

Aunt Susie