Archive for August, 2006
August 27, 2006
August 27, 2006 | Updates
Tomorrow is a big day! Just imagine the first time you sent a child off to Kindergarten. Now imagine that child is 2 years younger and severely handicapped and you’ll get a little glimpse into what I’m feeling. Basically, aaaaagggggghhhhh! I know Samuel will love it and he’ll learn a lot and it will be good for him, but it sure is hard for me to let him go. I will go with him for the first week to make sure he does OK. And I will probably end up driving him both ways. But he will be totally in the school’s care for a few hours a day. Let’s hope they worry about him as much as I do :)!One of the main things I worry about is that Samuel will get sick all winter long being at school. Let’s hope not. I think, though, that he got about 6 colds from Ben last year, so it probably won’t be any worse than that!
Samuel finished up his 2 weeks of hyperbarics and did really well during the treatments. He was fine during every session this week and mostly is just content to watch the movie running while he’s in the chamber. His myoclonus has been a little worse this week - nothing too drastic, though. His seizures got worse during our last set of treatments and then disappeared a while after we were done. So I suspect that is what’s happening this time. I’ve read of that happening with other children and hyperbarics. It will often increase the frequency of their seizures before it decreases them. So it’s just something we have to wait out.
We ordered a wheelchair for Samuel about 6 weeks ago so he would have one for school. I finally had to call this week and get mad at the wheelchair place because I don’t even think they have submitted the paperwork for the chair to our insurance company, yet. I told them we had specifically ordered the chair for school and now school was starting and we were no where close to having a chair. So they sent out a loaner chair until they can get us ours.
Since Samuel hated his last wheelchair, I was careful with this one. I put him in it several times without strapping him in and then we drove around making all kinds of race car noises and driving crazy so he would enjoy it. Once he thought it was a toy, then I strapped him in and he was good with it. He spent a couple hours in it yesterday while we went to trout & berry days and then another hour or so in it today during church. Tonight, we put him in it again and went for a walk. He definitely tolerates it much better than any of the other chairs we have tried. So that’s good since he has to go to school in it tomorrow.
The last thing I want to share is that several of us around here have been having interesting dreams about Samuel lately. Tom happened to mention to me that he keeps dreaming that Samuel is walking. Tom said he obviously has a difficult time walking in his dreams, but he is walking. I’ve dreamt that Samuel is talking. Again, he has an obvious speech impediment in my dreams, but he is talking. I’ve also dreamed that he has figured out how to push himself around the carpet with his feet. And our physical therapist (who I absolutely love) has dreamt that Samuel is walking in our front room from his dad to me and back again. I just think it’s interesting that we’ve all had such neat dreams about him in just the past month. I can hardly wait for those dreams to come to reality!
Samuel had a father’s blessing before starting school and he was blessed with some pretty neat things. I think this year is going to show a lot of improvement for our little boy. He’s such an angel and we couldn’t be more blessed having him!
Pray for a good week at school! And pray that Samuel will continue to progress and learn to crawl, walk, talk & eat by mouth. Thanks!
Love,
The Jewkes
August 23, 2006
August 23, 2006 | Updates
Late update again, but things are going fine-a little crazy, but fine :)! Samuel completed a week of hyperbarics and will do one more week. Then we will wait a few months before doing another 10 seesions and so on. We’ve been very blessed to have some members of the family drive Samuel to hyperbarics. So between grandparents, aunts, Samuel’s dad and myself, we are able to just drive a few days each and it’s not such a burden on me. We’re also lucky that grandma is willing to meet us at hyperbarics to either go in the chamber with Samuel or sit and watch Nathan while I do. What would we do without all our wonderful help?Samuel has been good in the chamber. He was only upset one day when he got really hot. Otherwise, he has been pretty content to just watch a movie. He is VERY wiggly, though, and there isn’t much room in that chamber when there are 2 of you in there! But it is all worth it since we have seen so much improvement from it.
This past weekend, we went to Bear Lake for a family reunion. I ventured up later than Tom and the older boys and tried staying overnight in the motorhome. Amazingly enough, everyone slept fine. It REALLY surprised me! In fact, everyone slept so well that we stayed 2 nights instead of just the 1 I was originally planning on. All right boys!
Samuel also got a chance to sit in the lake. I let him sit where the water came up to his waiste and I held him there until my back couldn’t hold him anymore. He loved the waves splashing up against him and watching the other kids play around him. It was definitely fun. His brothers even pulled him around in a blown up canoe for a little while. And we even took him for a ride on the boat. He smiled huge as we drove around and he eventually fell asleep. We all had a good time.
Today, we went out to his school to see the bus he is supposed to ride to preschool each day. There were some issues with the carseats they use and how close the bus seats are to each other. They don’t leave room for Samuel to straighten his legs when he gets upset. And that could cause a real problem because he doesn’t seem to know when he is hurting himself. I fear that he will straighten his legs against the seat when they are twisted in some strange fashion and possibly break his ankle or something. So we will have to see what we can come up with to prevent that. If we can’t find anything, I will just drive him instead of having him ride the bus. I’ve already decided to do that once a day because the trip to school could be as long as an hour and that is just too long for him.
And, lastly, Samuel has now had 2 horseback riding sessions. And he absolutely LOVES it! The first night, he rode with one of his therapists for a while and then he rode laying on his back on the horse while a therapist walked on each side of him. He liked sitting up on the horse because I think it sort of immitated him walking around on his own. It’s like the scenery was moving by Samuel just like it used to when he was running across the ground. He really was looking around and smiling and enjoying the ride. And he really enjoyed laying on the horse-almost too much-because he got so comfy, he nearly fell asleep :)!
Tonight we went again and I rode with Samuel for nearly 45 minutes. We rode bareback with spotters on each side of us and again, Samuel really enjoyed it. He looked around and loved seeing the other horses go by. He smiled at everyone who said “hi” to him. And towards the end, he again got so comfortable, that he nearly fell asleep. But even with his heavy eyes, he seemed to be trying to stay awake because he liked it so much. It’s been a really good thing for him and we hear that there may soon be an indoor arena here in Paradise. That would be great! Samuel was jabbering up a storm by the time we were done tonight. I think he really enjoyed himself.
Well, keep praying, we still have a long way to go! Until next week…
Love,
The Jewkes
August 14, 2006
August 14, 2006 | Updates
The update for this past week is pretty boring. There wasn’t much going on. I have been swamped helping Tom with his business since we lost a secretary. But we have someone new hired and she seems to be doing a good job, so things should slow down that way soon.We did make a trip to the local doctor this week for Nathan’s 2 month appointment. The doctor asked me if Nathan was smiling and cooing. I said he wasn’t and should I be concerned about that? She just said that by 2 months Nathan really should be, so I asked if it made a difference that he was premature. The doctor said, “He was premature?” INJECT LONG PAUSE HERE… You know, sometimes I’m just not sure what to say when doctors say really stupid things :)! So I just calmly explained that, yes, Nathan was born a month premature and spent 2 weeks in the ICU and blah, blah, blah. I reminded her that I was the one who debated taking him home with his NG tube for a week before I finally did it. Finally, it clicked and she realized who I was. (Funny that seeing Samuel sitting there with me wasn’t a HUGE RED FLAG for her!?) Oh, well. Apparently Nathan’s chart had said he was a term baby. Anyway, it does make a difference that he was premature, so we have another month before we can expect those smiles and cooing. But tonight, he smiled at us for the first time. It was a huge, beautiful grin in response to me smiling at him. Oh, how I love those!
Both Samuel and Nathan had immunization shots that day. Samuel reacted just as he should. He was happy-go-lucky until the moment she poked his leg and then he let out quite the holler. It didn’t take too long to calm him down, though, and then we wiped the tears from his eyes and headed home. It seems sad to be so happy when he reacts normally to something painful. But in the beginning, he didn’t even flinch when getting an IV. So I consider his reaction a sign of great improvement! Nathan didn’t get away as easily and had to endure 4 shots. He took much longer to calm down and then he fell asleep. He had a fever for a few days from it, but all seems to have returned to normal now. (Oh, yea, I should report that he weighed in at a whopping 8 lbs 6 oz. At least we’re on the right track!)
Samuel started 2 weeks of hyperbaric treatments today. His grandparents drove him down and his dad will take him a few times this week in order for me to try and get caught up at home. But his grandparents said that everyone at hyperbarics could see so much improvement in Samuel. And even though I cautioned the techs against doing so, they apparently tried to put Samuel in the chamber alone. But he would have none of that and after a few minutes of screaming, they decided to allow grandma in with him. After that, he was fine. He knows how to get what he wants!
So hyperbarics and therapy should fill the next 2 weeks and then school starts. (We are also trying to fit in hippo therapy (horseback riding) once a week over the next 5 weeks. So that should keep us hopping until September :)!
Other than that, we are just seeing more and more moments when Samuel seems to mimic the things we are saying. It’s so hard to tell if he really is, but it is happening so often that it is hard to say it is just coincidence. We’ve heard him say drink (dink), quack (cack), moo (ooo), go, hat and hi all in the last week. Keep in mind that when he says things, it just “sounds” like he said the word. It’s not clear enough to be certain. But all the above words were said after we had said them, which seems to be an attempt to mimic us. So who knows, but we sure can hope!
Until next week… Thanks for all the prayers. Keep them coming!
Love,
The Jewkes
August 8, 2006
August 8, 2006 | Updates
Sorry for the late post. We went down to Primary’s for a pump refill this past Friday and we reduced Samuel’s doseage once again by 75 micrograms a day. He is now at 850 a day. The nurse really questioned me before coming down that much. (She’s new.) She said they don’t normally do that much at a time. But I told her that’s what we’d done last time and that when we were going up we were going up 100 a day. So she finally did it. And we have seen no bad side effects from it.We also saw one of our rehab doctors who we hadn’t seen since probably last December. She walked up to Samuel and said “hi” and he smiled at her. She was pretty taken back by that. Then she checked the range in his legs. (Something within any rehab doctor draws them to do that!) And she was really impressed. She commented on how strange it was that he could be so bad right after the accident and improve so much afterwards. (Of course, it’s not strange when God’s on your side and you have so many prayers being sent up for you.) When she finished, she turned around and saw Nathan and said with a perplexed look, “Who’s that?” I said, “Oh, yea, well, uh, he just showed up!” The look on her face was priceless - like she just couldn’t figure out how we had done all that in the few months since she saw us last. I had to chuckle! I think we’ve surprised her on more than one occasion and I’m sure we’ll continue to keep her guessing!Samuel is wigglier than ever today. His physical therapist said he had his best day yet. Samuel was pushing himself from a sit to a stand and it wasn’t posturing. It was purposeful movement of his leg and butt muscles. The therapist said he really didn’t think Samuel had control of those muscles until the last few weeks and now he’s totally amazed at what Samuel is doing. We are also seeing more control of his hands. For the first time today, he held toys in his hands all on his own and would move them around like he was playing with them. He even grabbed one that was on the floor on his own. It was probably just happenstance, but it’s just an improvement for him to be able to grasp onto things.
Samuel is making tons of sounds. We just don’t know what they each mean :). But he is so fun to play with. He loves to be tickled or thrown or swung around. He loves to see people dance and especially to be held while they dance. His smile is contagious and he shares it frequently. We love it.
Samuel is still trying to figure out how to move around on the floor. I sure wish he would find a consistent way to do so. I think it would really relieve his frustration (and probably increase mine). We are also trying to find a more comfortable walker for him because he seems so intent on standing and walking when we hold him upright. He really seems to enjoy it. (Sitting is a whole different ballgame.) Samuel hates to sit in just about anything. It’s going to be quite the challenge to get him to sit during school. Hopefully, we’ll figure something out.
This week was busy. Therapy is back in swing, we blessed Nathan this weekend and we went through the temple with my grandma to have my grandpa sealed to her. It all was very nice. I’ve posted a few pictures of Nathan and the family. I took some of Samuel, but they turned out pretty blurry so I didn’t post them (bummer).
Well, that’s about it for this week. Poor Samuel is sporting a nylon swim cap everyday now courtesy of his mother in a serious attempt to get the hair to grow back on his bald spot on the back of his head. So if you see us around, you’ll know I haven’t lost my mind. I just love that curly, red hair!
Keep praying. It will all come in time. I can see it bit by bit everyday!
Love,
The Jewkes
