Archive for December, 2006
December 28, 2006
December 28, 2006 | Updates
We hope everyone had a very Merry Christmas! We had a nice one. We went to several parties where Samuel was able to sit on Santa’s lap and spend time with family and friends. He mostly just smiled at Santa and enjoyed all the attention. He did get his hand in Santa’s beard once and didn’t like the feel of that so we had to pull him off Santa’s lap.Samuel wasn’t in a very good mood on Christmas Eve. We went caroling at the nursing home and I think the combination of being there and of Samuel being agitated upset me a bit. I won’t deny that it is hard having little flashes of how Samuel should be pop into my head. This year would be a year of him being excited for Santa and anticipating getting all the things he had asked for. He would be enthralled with the lights and the tree and the decorations and chatting with his brothers in all the excitement. It just got to me on Christmas Eve. I want so badly for him to walk and talk and play like all the other children. And I truly believe that is coming someday. It’s just hard to be patient.
At the same time, I do so well on days when Samuel is happy and smiling. Those days are easy and he is the greatest joy in our lives. And we are so blessed that he is so aware and so interactive with us. We certainly can’t complain!
Christmas turned out to be much better. When I went to get Samuel out of bed, he was sound, sound asleep. So we opened gifts without him. I debated doing that because I felt bad, but he was so very asleep and I knew that he would enjoy opening his own presents more if things weren’t quite so crazy. So when he woke up at about 10 am, we had another little Christmas just for him. It was cute because after we opened the first present, he sat and stared at all the others under the tree like he was thinking, “Hey, this had something neat in it. Can we open all those?!” And we did :)!
Samuel got a big love sack to lounge on, a portable DVD player, lot of new movies, a pack man game with the old large size controllers, a new coat, hat & gloves, clothes and lots of other little gifts. It turned out to be a fun morning. And we spent the rest of the day lounging and enjoying each other’s company. We then spent the next day sledding. We bundled Samuel all up just like Ralphy’s brother on the Christmas Story and then he and I slid down the sledding hill a bunch of times and he even got to ride on a snowmobile with daddy. He seemed to like the sledding, but not he cold. He’s my kind of kid!
So, we’ve sort of continued the trend for the last week, lounging and playing and spending lots of time with family and friends and Samuel has been in a good mood despite his change in baclofen dose. I forgot to mention that as of our last posting, Samuel’s pump is now down to 550 micrograms a day. If I recall correctly, it was just this past June that his dose was 1100 micrograms a day. And we aren’t seeing any adverse side affects due to the decrease. Our hope is to someday remove his pump. Let’s hope we can get to that point.
The only other news I can think of is that Samuel has been doing better at eating. I fed him several bites of mashed potatoes on Christmas Eve and some chocolate on Christmas Day. He did much better than he’s done for a long time eating it. So we’ll keep plugging along on that in hopes to get him eating on his own soon.
Well, happy new year to everyone and I’ll try to get some cute Christmas pictures posted soon. Keep praying – especially for the eating and crawling. We’ll get there. It’s just going to take a lot of work and prayers!
Love,
The Jewkes
December 18, 2006
December 18, 2006 | Updates
Well, we finished up hyperbarics. Samuel did great on Monday and on Tuesday, we had to pull him out about 18 minutes early because he pulled ground off his leg again. It’s pretty crazy that he does that because we put a big sticker on his leg that the ground attaches to, then we wrap the sticker in coban and wrap that in medical tape. Then we run the cord on the ground up underneath the mattress Samuel is laying on so he hopefully can’t get ahold of it. But in the 10 sessions we just did, he actually got it off 3 different times. WOW! What a wiggler!The big news though…that makes 100 hyperbaric treatments! Whew! That’s a lot of gas and a lot of hours in the car and, well, a lot of money. But it has been well worth it and if we went back in time, we would do it again. But thank heavens we won’t have to do those 100 again :)!
Other big news…Samuel weighs 30 lbs. That’s been my goal for months now, and we FINALLY made it! I think the new formula is helping because although he still spits up plenty, it’s about 1/4 of the amount he used to spit up and he really hardly ever throws up. So I’m happy about that.
Samuel had therapy and 2 chiropractic appointments this week. The chiropractor says his back is slightly twisted to one side and he has been able to adjust him everytime we have taken him. I think it’s very good for him. He wasn’t as cooperative during his massage this week. I certainly wished I could have taken his place :)! Who in the world would wiggle during a massage?!
We had a busy day today. Samuel’s class at school went to the local Celebration Park. I went with him while Tom watched Nathan. (Thanks, dad!) So Samuel got to ride the school bus for the first time ever! We’ve been waiting for his wheelchair so he could ride the bus in it because the bus seats are too close together to allow him enough leg room to ride in a car seat on the bus. Samuel was unhappy waiting for the other kids to get on the bus. But the second the bus started moving, he was happy as could be and eventually fell sound asleep.
Once we got to the indoor park, Samuel went down the slide and climbed through the soft playground with me. He also rode the carosel and seemed to like that. He watched all the kids eat pizza and pop and then we headed back out onto the bus. Again, he didn’t like waiting for all the kids to get on the bus, but he loved the ride once we were moving and he fell fast asleep on the way home.
The rest of today was spent driving down to Salt Lake for a pump refill. Amazingly enough, the doctor’s office called us late last week to see if we really wanted to keep out pump appointment because they had down that our refill date was April 28th, not December 28th. I told them I was certain his refill date was the end of December and that they really should have been able to tell that because if it was in April, he would have gone 6 months without a refill and there are very few patients with these pumps who can go that long between appointments. Just a little scary, though, seeing as how missing an appointment and letting his pump run out can cause extreme withdrawal symptoms - including death. And we know from the experience of others that Primary’s isn’t that reliable on ensuring patient’s pumps get filled on time. Scary…
Christmas shopping is done, though those in our family that live far away will probably see their gifts AFTER Christmas. Hopefully, they’ll understand. Tom and I did most of the shopping one evening from about 6 pm until 1 am while Grandma Bird babysat and then I spent another night on the internet from about 10 pm until 5 am finishing up. It’s not that we bought all that much, it’s just that it’s hard to find just the right thing with limited time and limited resources in our smaller community. It’s the only time of year I wish we lived in a bigger community! So, we’ll spend this week wrapping presents and attending a few Christmas parties and we plan on taking Samuel and the kids sledding one day during Christmas break. We’re hoping Samuel will really enjoy that. We also have built Samuel a slide that has hand and foot holds in it so we can hopefully teach him to propel himself forward on it. That, along with teaching him to eat, will be our next big goals over the next few months. So please pray hard that Samuel will learn to eat and crawl soon.Over the last week, I’ve met 2 children with cerebral palsy who have been so fun to interact with. One was a girl in our stake who we saw at the store the other night. She is 20 years old and was there shopping with her mom. She drives a power wheelchair. She doesn’t speak, but she signs a little and she clearly understood everything we said to her and responded appropriately. She was extremely happy and showed off when we asked her to show us her power chair by driving up and down the aisles with much better control that I would have in that chair. She was just as wiggly as Samuel and as smiley. It was fun to see.
Then today, I met a boy at Primary’s. I would guess he was about 7 or 8 years old. He also had and drove a power chair. He spoke, but I couldn’t understand him. His mother could, though. And when I would ask him questions he would nod his head and smile appropriately. He was happy and obviously smart. It was encouraging to say the least.
Well, that’s the update for this week. Have a Merry Christmas! And we’ll have lots to update next week.
Love,
The Jewkes
December 10, 2006
December 10, 2006 | Updates
Well, this week was a bit crazy. Samuel did great in the chamber Monday through Wednesday. But on the way home from Salt Lake, Samuel & Kaylee were rear-ended in our Suburban in traffic on the freeway. They were hit by a Honda Accord that the highway patrolman thinks was going about 30 miles an hour. The two people in the Honda were taken to the hospital and their car was a disaster. Our suburban faired very well considering how hard it was hit. It was pushed into the car in front of it, so it sustained damage in the rear and the front. The bumpers were pushed up against the tires, so it wasn’t driveable.Anyway, Kaylee was pretty shook up. Samuel didn’t seem too affected by the accident. But Kaylee’s neck is pretty sore, so we are assuming Samuel’s most likely feels the same. So they are both seeing a chiropractor for a while just to be safe. Samuel got a massage at his first appointment and fell sound asleep during it. He also handled the adjustment well.
So, we spent all of Thursday on the phone with insurance companies and getting a rental in order. We also had to buy Samuel a new car seat because once a car seat is in a crash, they recommend you no longer use it because it can sustain stress fractures in it. So we bought a new car seat that I already dislike. I don’t know if you all remember my first quest for a car seat, but it wasn’t fun and I was lucky to find the one we had. So I will be returning the one I just bought and trying to find one like the one we had. The new one just doesn’t provide enough trunk support for Samuel.
So we’ll go to hyperbarics twice this week - once to make up for last Wednesday and once to make up for the session where he was pulled out half-way through the treatment. We’ll also be trying to fit in school and therapy and now a few chiropractic appointments. That should make for a hectic week as we try to finish up Christmas shopping as well.
Otherwise, all is good. The holidays will be a little sketchy because most of our help will be on vacation. But we should be fine. It will be nice to have the kids home for a few weeks - hopefully :)!
Thanks for everything and Merry Christmas! Keep praying for Samuel! He sure is a sweet kid!
Love,
The Jewkes
December 4, 2006
December 4, 2006 | Updates
I’ve sort of gotten into a every 2 week post routine. I’ll try to get back to the weekly ones, but don’t hold me to it. This month promises to be a crazy with one with Christmas and all.
The past week, Samuel saw snow! He’s seen it before, but not being able to play in it last year, I don’t know how much he remembers it. I tease him that someone made a REALLY big mess outside and who’s going to clean it up! He seems to think that’s pretty funny. I’m also noticing that he smiles at appropriate things in movies or shows and smiles consistently at the same point in several movies. Like in Incredibles, he always smiles when Mr. Incredible says at the beginning, “I just cleaned this mess up! Can’t we keep things clean for a while!” And today, he thought Harriet Olsen on Little House on the Prarie was pretty funny after she’d had a little too much of the doctor’s tonic (moonshine). Pretty cool, eh?
We’ve now done a full week of hyperbaric treatments. The first day was a real bust. We tried the new multiplace chamber and Samuel hated it and screamed harder than I’ve seen in scream in a LONG time! The new chamber looks like a HUGE submarine - almost like one out of a cartoon with lots of bells and whistles and knobs on it. You walk inside and sit down in a chair and they pressurize the entire chamber. Then they put “space helmet” on you and feed the oxygen into your helmet. Well, that caused several problems. First, there was nowhere to lay Samuel, so I had to just hold him. Second, he DID NOT like his hood (helmet). And the TV in there was small and he had to wear earphones inside his hood to hear it. (The ear phones stayed on a total of about 2 minutes.) He was so mad and screamed so hard that he kept gagging and coughing and I was SO GLAD I’d fed him long before his treatment because I didn’t even want to know what kind of mess we would have had if he’d thrown up during the treatment.
So…we went with a new plan the next day. We put him back in the monoplace chamber. (They don’t allow 2 people in those chambers anymore.) And we lined the chamber with pillows. He did good the first day. The second day, he ripped the ground right off his foot and then just for spite yanked out his feeding tube also. So we had to take him out halfway through the treatment. The third day, he did well and the fourth day he made it all but the last 5 minutes when he put 2 pillows on his head and had to be taken out. So, 5 more to go and wish us luck! He loves watching Incredibles, so we are only letting him watch that while he’s in the chamber. And he loves making things hard on his Aunt Kaylee when she takes him down for treatments (i.e. pulling off grounds and pulling out tubes and sticking pillows on his head). So we’ll pray harder those days!
He also woke up with a cold the day after I posted that he wasn’t sick. So from now on, I’m not telling you if he’s not sick! You’ll just have to assume he’s not if I don’t say he is :). But he got over it fine and just required a little oxygen a few nightes because he was stuffed up.
He’s doing great on his new formula. He doesn’t hardly ever spit up. The seizures are still around, but don’t seem to make him sick to his stomach anymore. And he seems to be getting stronger all the time. His abs are like rocks and his legs are getting stronger. Our PT suggested we start putting weights on his arms and legs while he’s squirming around to help his muscles increase. I asked him if he was sure he really wanted that. I think we’ve all been bopped in the nose by Samuel our share of times and wished for a moment that he wasn’t quite so tough.
Oh, I almost forgot that Samuel FINALLY got a wheelchair of his own. It’s cool if I do say so myself. It has all the bells and whistles and is “grasshopper green”. He seemed pretty proud of it when he first saw it. It’s worked out well. His head stays on the headrest, the lateral supports work better than any other chair we’ve had, and the footrest is GREAT! It’s one “box” for both his feet to rest in so he’s not smacking his feet against hard metal as he moves his legs around. It’s pretty well the best chair we could have asked for thanks to a great PT and a wheelchair rep who had a near drowned child of his own. It’s always good to work with people who truly understand your situation.I just want to leave you with a few cute stories. Samuel’s Aunt Kaylee comes and works with him for a few hours each weekday. Samuel has learned to expect her and a few minutes before she is due to arrive, I tell him she is coming and he starts grinning from ear to ear. Sometimes, he watches out the window with me for her. Sometimes he answers the door with me. But always, he’s excited for her to come. Samuel even went swimming with her the other day for the first time since a few days before his accident. He was pretty good – just didn’t like the life jacket – stinker. But I think in the end, the water was just too cold.
Another cute story. The other day, Tom was hitting himself in the head with Samuel’s feet. (Strange picture in your head right now, I know. But we will pretty well do anything to entertain this little guy.) Well, Tom got Samuel laughing so hard! His belly was shaking and the sound was coming out and all that wonderful stuff. And, Tom has figured out how to throw Samuel clear up in the air and catch him safely. There is nothing in this world that Samuel enjoys more! NOTHING!
So one more week of hyperbarics and then I’ve got to buckle down and figure out a few new ideas for fundraisers. There aren’t many options out there to help Samuel get better that are “approved” and that health insurance with pay for. Health insurance companies in these instances mostly pay for maintenance of the patient. The medical community just does not believe that the brain can be healed. They are headed in that direction, but there are a lot of years between now and that becoming a reality. But there are a lot of off-label treatments – like hyperbarics – that could make a huge difference in Samuel. I swear by hyperbarics and can’t believe the difference it’s made in Samuel. Yet, insurance won’t pay for it and none of our doctors would have ever recommended it. So, we will be paying for a lot of the things that we want to do to try and improve Samuel’s function. Anyway, enough on that for now. I’ll let everyone know what I come up with.
Again, thank you for all your prayers. We couldn’t ask for better friends, family and acquaintances. You are all wonderful! Keep up the prayers.
Love,
The Jewkes
