Sunday, December 14, 2008
Today he has done much better and the Sodium has come down and we should go home in the morning. It's been pretty weird to be back in here but it's been good to see some old faces and not so good to see others (Duzy). We are so thankful for all of you and wish you a very happy and healthy holiday season.
Thursday, November 27, 2008
Sunday, November 2, 2008
Sunday, October 19, 2008
Dear Rob and Angel,
You invited people who care about Charlie to email their thoughts. I had been bouncing back and forth for a long time to send you this or not. But since you have invited, here it goes. The reason why I was so hesitant is simply you don't know me. I didn't want to seem intrusive on your family's life. So you have some connection to who I am, I am Doug Benson's cousin. I have a daughter just about Charlie's age.
Charlie's story has had a great impact on me. I've spent nights bawling at the computer screen, my heart going out to you. I don't check the blog near as often now, only every 6 weeks or so. Once I showed my mom your blog and she started crying too. See, it hits so close to home. My sister was born with mental/physical disabilities associated with microcephaly. And your story brought back so many memories, the J-Peg, the not knowing how much of her surroundings she could take in, the tumbleform chair, the wheelchairs, the times when you know she recognized you somewhere deep in her.
You may have already received this story from someone else, but if not, enjoy! I think of this poem every time I read your blog. My mom received it sometime after my sister was born, and I remember her passing it along to others in similar situations.
Emily Perl Kingsley
c1987 by Emily Perl Kingsley. All rights reserved.
I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......
When you're going to have a baby, it's like planning a fabulous vacation trip - to
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to
But there's been a change in the flight plan. They've landed in
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower-paced than
But everyone you know is busy coming and going from
And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.
But... if you spend your life mourning the fact that you didn't get to
- - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - -
Through time, the blessings out way the strife. I feel I am really inadequate to speak about this since I was never the parent, only the sibling. I probably don't know a quarter of what this really entails, but I do recognize the affect it has on you, your family, and all those around you. My prayers are always with you. (Attached is a picture of my sister and I. I tried to find one with our brother too, but simply couldn't find the one I was looking for).
Monday, October 13, 2008
Charlie definitely isn't looking his photographic best these days due to the steroid chubby cheeks and the facial rash and the wandering right eye. However, I had to share the "pleasant expression" that we started seeing yesterday. It's hard to call it a smile because it isn't one yet. The corners of his mouth moved back slightly but do not turn up. My mom was the first to provoke it Sunday afternoon with some "coochie, coochie, coos"- then I was able to get the same reaction last night with some "ahhhhhhh- boo's!" Now remember he is deaf (cochlear implant will be reprogrammed at the end of the month) so it is all about the exaggerated facial expressions not the words. SO what's the big deal you say....he has smiled in his sleep a few times before (really cute, mouth turned up smiles). Well... the big deal is that he reacted positively to something WE did. Up until now we have rated his mood by the absence of things like whining or stiffness. Although sporadic, it's very exciting- maybe all the binky sucking has given his mouth muscles a workout.
Sunday, October 12, 2008
He has been doing a little better in therapy. He seems to tolerate bearing weight in his arms and shoulders better than before and he is alert a lot more often. He is only taking one nap a day and the rest of the time is softly moaning. He is now moving his arms up to his face by himself and can sometimes hold his binky in if he hits it just right. (not on purpose yet). He has had a cold for a couple weeks and is having trouble getting rid of it completely due to his decreased immune system so we haven't been feeding him much baby food as he is coughing more. He is liking his binky a lot and kept in in himself for 3 hours on Sunday. This is a new trick for him and we are pretty proud.
Wednesday, September 24, 2008
And he also wants us to start decreasing his other seizure medicine (phenobarbital)!!!
Tuesday, September 23, 2008
Britt has had a cold for a week and because Charlie's immune system is depressed he got it too. His cry sounds hoarse, stuffy nose and goopy eye and he wants to be held a lot. He isn't interested in doing his exercises or swallowing his tastes of baby food. I can't blame him with a sore throat. I am impressed that he is able to cough and keep the gunk out of his lungs so far. :) When we left the hospital that was one of my biggest concerns.
Before he got sick this week he was doing great in therapy. He was starting to lift his head while on his tummy and didn't hate bearing weight on his arms. Big improvement in my eyes!
Friday, September 19, 2008
WOW! Read this and don't skip a line. Connie works with Charlie's
Grandma Cheryl and we can't thank her enough for taking the time to
share this w/ us.
Charlie is such a great inspiration to me. It is uncanny the effect he
has had on my life and the strength that I have gained from your family.
I have followed Charlie's story since he first became ill. What a
privilege it was to work with Grandma Cheryl . She has been so patient
to keep me informed and to invite me to visit Charlie in his home. I
LOVED holding sweet Charlie and feeling something so special about his
strong spirit. I came away from that experience filled with so much
faith and such a feeling of peace. It is difficult to explain. I have
kept his bracelet close by ever since Grandma Cheryl shared one with me.
I continually pray for him and all those who help care for him. I am
so grateful that you are willing to share your story and lives with all
This summer I spent five weeks teaching English in Vietnam. I was a
bit nervous and I wore Charlie's bracelet every day. There were many
long days that I needed to be reminded to take "Charlie Steps". Many
people asked me about the bracelet and I shared Charlie's story with
many people. Everyone that heard the story was touched and wanted to
know more about this little boy. They were all stunned at the strength
your family possesses.
I have taught in China for several years and I was anxious to go back
and help where the devastating earthquake hit earlier this summer in
Chengdu. I have many friends there and I know that they have suffered a
great deal. I spent six days in a remote village working with the
Chinese Red Cross doing relief work with many of the victims. The
school that I had taught at was totally demolished and many friends were
killed. I lived in a tent with a family that I was close to several
years ago. They lost two children when the school collapsed as well as
their house and everything they owned. I cannot imagine that kind of
total loss. I was overwhelmed at the devastation I saw. They are such
humble people and willing to accept what has happened to them. They
invited me to share everything they had. We worked together cleaning up
and building some new homes around the collapsed school. I found such
strength as I looked at my wrist and thought of Charlie and his
strength. My friends asked about the bracelet and I told them the
story. We spent several hours talking about life and our attitudes about
facing adversity. The mother, Thien Ann, was moved to tears as we
talked and shared a very spiritual time in that little tent. The night
was stifling hot, but we sat close and shared our tears and our hope for
the future. As I prepared to leave and fly back to my comfortable home,
I gave Charlie's bracelet to Thien Ann. She sobbed as she accepted my
simple gift and asked me to tell you that she understands heartache and
she hopes you will all find peace in your heart as Charlie continues to
teach all of us. She wanted me to be sure to tell you about her love for
the lessons of "Charlie Steps" and that she will always think of you and
your strength. I left her with a hug and my promise to pass along her
empathy and admiration for all of you.
All of your family continues to bless our lives. You have inspired
people around the world with Charlie's story. I am overwhelmed at the
great blessings I enjoy and so often take for granted. I have committed
to be more full of gratitude and to share my blessings with others who
need help. I know your "Gammy" is proud of you. She was quite a lady.
Thank you for the new bracelets. I treasure them. I am truly grateful
for the opportunity I have had to get to know you. Your faith and
strength is an inspiration to all of us. May Heavenly Father continue to
watch over you and wrap you in His arms when you need comfort.
Sunday, September 14, 2008
Oh, I almost forgot... BYU - 59 Ucla - 0
I started reading Charlie’s blog when my daughter Emma was also diagnosed with meningitis (on the same day as Charlie, I think). I used to read it from the PICU and prayed for Charlie as I prayed for my own daughter. My daughter’s bacteria was different than Charlie’s, and probably not as aggressive. Also, because she was only two months old, even the low fever she had was cause for an immediate spinal tap. The doctors believe they caught my daughter’s meningitis in the first 12 hours and with aggressive antibiotics, she made it through with no repercussions. Since then I have kept checking in on Charlie’s progress and every time I am so delighted to see how your family has rallied to help with Charlie and how you and your wife have such a positive outlook. I remember seeing pictures from the hospital days and thinking you guys were so amazing for keeping it together and I know that God is your “glue”. Charlie couldn’t’ have been born into a better home, with better parents or a better family. He chose you.
Please know that one family of strangers in Miami thinks you guys are heroes, all of you!
Ps. Attached is a picture of Emma, with her big sister Stella
Saturday, September 6, 2008
It has been one week since we started the ACTH therapy so I thought I would let you know how it's been going so far. He does pretty well with getting the shots even though the medication is extremely thick and takes a while to inject it into his thigh.
Last Saturday (day 1) was pretty bad. His seizures were getting more frequent, more intense and lasting longer. As the week progressed he was still having more seizures but he also was extremely stiff. He would wake up in the morning with his arms fisted and straight up towards the ceiling. His head also took a lot of pressure in order to turn it to the middle and he would scream when he did therapy. Wednesday I increased his Baclofen (muscle relaxer) to the limit the doctor had allowed me and he has improved some. By Friday I think the seizures have improved some although he has started to get more angry. His blood pressure has remained low and I haven't seen any water retention :) He gets his blood checked in one more week to check for liver and kidney problems.
Sunday, August 31, 2008
I've read that there is a decline in the children's progression due to the infantile spasms. The therapists and I had been noticing this over the past couple weeks with Charlie. He had shown glimpses of better head control, purposeful movements and tolerance for therapy but all of this had either plateaued or declined recently.
The treatment the Doctor recommended was ACTH which is a hormone that increases the body's production of steroids. It usually stops the infantile spasms if the child is an infant but has a lesser chance the older they get. Dr. Filloux and I decided that we would try this more aggressive therapy despite the side-effects. If it doesn't work then we will try different seizure meds.
Things Dr. Filloux told me about ACTH
* It is an injection that I will need to give him daily for at least 6 weeks (probably more like 8-10) into a muscle.
* It costs $29,000 for a 30 day supply. Where do I sign up to sell hormones for that much profit? I'm so grateful we have insurance!
* We will know in about 2 weeks if it works or not. It is usually all or nothing. If it isn't working we will will try an increased dose once and if it still doesn't work we will taper off and try something else. If it does work then after the treatment the seizures shouldn't return.
* It has similar side-effect to steroids- excessive weight gain, water retention, “moon face” characteristics, Irritability, Anger. Sound fun yet?
* It can affect the kidneys and liver and mess with his blood sugars so he will be monitored every 2 weeks.
* It can increase his blood pressure so he will need to have to monitor it nightly.
* It decreases his immune system- This is what I am most nervous about because we are just about to start cold season. I was just starting to feel comfortable taking both boys with me everywhere. I guess we are back to staying home and limiting sick visitors.
Britt trying out Char's new sensory therapy (Thanks Suz)
Highlights from appointment with Dr. Such Neibar (rehab dr)
* Results from his hip X-ray show that he has mild hip dysplasia (they come out of socket) so she wants us to put him in his stander more often (3 times a day for up to 1 hr each) to erode the joints.
* Tight ankles and hands- keep stretching them every day and go back to using the leg and arm braces.
* Neck tortacollis- he still can move his head to the left but the fact that he prefers to have it to the right is making his right neck muscles stronger and shorter. We will start using a neck brace to keep his head mid-line and possibly botox his neck muscles in the future.
GOOD THIINGS I'VE NOTICED:
A month ago Charlie was discharged from speech therapy because she thought we could do everything she was doing at home. He seems to enjoy baby food. On a good day he can swallow ½ jar of sweet potatoes. We try to practice this everyday. He also likes to suck on pretzel sticks.
Improved vision: He is doing so great with his vision. He is now following moving objects more and more. There are no indications that he recognizes anything that he sees yet. Eyes still prefer to be to the right but now he will occasionally move them to the left. The right eye also still drifts to the right.
Tuesday, August 12, 2008
Wednesday, August 6, 2008
Also I had a baby when I was 18 years old, a little girl.(I know what your thinking Rob, "wow she started young"!) Its okay its the truth. Anyway I had no idea how to be a mom, and everything was very new to me. My daughter spiked a high fever and we ended up in Primary Childrens as well. The worst thing was all the tests they had to perform on her being 1 1/2 months old. The spinal tap was the worst. We finally found out that she had what is called Renal Reflux (where her urine doesnt drain out all the way and it comes back up to her kidneys, causeing urinary tract infection), she also had a blood infection in which we stayed for about a week on IV medications (which is nothing compared to your stay, you have us beat). She did have to take medications by mouth for a year, but the problem did fix itself. Thank God.
Okay and here is another story for you (yeah, I am not done yet! ha ha ha) My husbands goddaughter was diagnosed with Leukemia (ALL) a couple of years ago, which she stayed for about a year in the hospital due to treatments, complications ect. She is doing great now, has been clear for about a year with no signs of it coming back. She does have to be tested every couple of months, but hey you do what you got to do even if it means having your kids get poked by a needle every couple of months.
I also have a stepsister that works at Primary Childrens (AMY) she was one of charlies nurses & two other friends that work there. I love that place.
Okay so this is the end (Thank God huh!). I just wanted to say that your family is awesome, and I wish the best for you all. Believe in miracles because they do happen.
Monday, August 4, 2008
Thursday, July 31, 2008
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
Tuesday, July 29, 2008
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!
emily (in Philadelphia, PA)
Saturday, July 26, 2008
Thursday, July 24, 2008
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!
Sunday, July 20, 2008
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.
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.
Wednesday, July 9, 2008
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.
Saturday, July 5, 2008
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.
Friday, June 27, 2008
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
10:30- get ready and drive to 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
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
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:
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 handA 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.
Wednesday, June 11, 2008
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.
Wednesday, June 4, 2008
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-