Sucks and Smiles

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

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

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

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

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

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

Emily in PA

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

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

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

Sincerely,
emily (in Philadelphia, PA)

Angie Nadauld

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

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

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

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

Sincerely, Angie Nadauld, a complete stranger!

Marilee Christian

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

My Charlie Story


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

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

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

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

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

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

Just a Couple of Thoughts...

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

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

Ode to Jared

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

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

Bear Lake Charlie

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

Road Trip

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

Having a Ball

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