Archive for September, 2006
September 17, 2006
September 17, 2006 | Updates
Back again! You’re probably all sick of hearing from me. But keeping this care page has been one of the best things ever. If nothing else, it’s a great journal for us to look back on!
This week was full of ups and downs. But I’m feeling better than last week and hope I didn’t depress anyone too much :)! On Monday night, we went to the carnival at the school Ben, Wes & Samuel attend. Samuel started falling asleep about the time we got there. But we hurried and put him on the little “four wheeler train” and let him ride with Wesley. He seemed to enjoy it and it was fun to watch him ride with the other kids. Not too long afterwards, Samuel spit up a little, gagged and then threw up. That’s been happening a lot lately, though, so I was prepared for it when I saw that “look” on his face and we just ended up with a few dirty burp cloths and not an all out disaster.
My sister stayed with us for a while and then had to leave, so that left me with all 5 kids. I wasn’t too concerned about that until Tanner asked if he could go get some cotton candy and disappeared for about 1/2 an hour. Ben and Wesley were in line for rides. I’d chosen to carry Nathan instead of bring the stroller and Samuel was upset in his car seat. I was getting a little frustrated trying to figure out where to put Nathan so I could pick up Samuel when Tanner finally came back. Apparently, the line was long - really long, I guess! Anyway, I’ll be glad when we finally get our double stroller that we ordered clear back in June so I won’t have that issue again.
We stayed at the carnival for quite a while and just before leaving, I got the urge to take Samuel on another ride. I just wanted him to enjoy his carnival, too. So I asked the girl at the huge blow up slide if we could try and take Samuel down it. She said “sure” and she would get all the other kids off first. So Tanner and I hauled Samuel up to the top - and I mean HAULED! I think I would have had a hard time just pulling myself up that thing. But Tanner and I had to do it one-handed with 27 lbs of Mr. Samuel in our other arms. We almost didn’t make it! Once at the top, I pretty much changed my mind! I was mostly worried that I wouldn’t be able to keep Samuel safe on the way down and that I break his arm or leg or something. So I sent Tanner down first to watch if I should expect a crash at the bottom or something. Then I took a big breath and down we went! Lucky I’d taken that big breath because I think I screamed all the way down. But Samuel just smiled huge all the way down and for about 5 minutes afterwards. He loved it!
Our last horseback riding session was Tuesday. Pretty much the same story as before except this time, they let us trot on the horse. Samuel instantly smiled and then started to giggle. He thought it was great.
School was good all week. Samuel stayed awake most days and if he did sleep, it was just for a little while. He has also been calm at school with less crying. And they have him working with switches and say he is doing a good job. We did miss Thursday because I had a head cold and his teacher was out of town so I decided we’d just skip that day.
Our pump appointment went OK. Samuel threw up on the way to Salt Lake. And it was strange because he was being fed at the time he threw up, but he didn’t throw up Pediasure, he threw up yellow stomach fluids. I had to keep stopping the car because he was throwing up or crying. So we ended up being an hour late for our appointment. And then I had forgotten to numb the injection site, so I made them wait another 20 minutes for the numbing cream to work before they filled the pump. Thank goodness I did because it took the nurse 2 tries and a lot of digging with that needle to find the pump port. And Samuel was screaming even with the cream.
We reduced Samuel’s dosage again so we are now at 775 micrograms per day. And we made another appointment in a few weeks to reduce it again. The doctor was out of town, so I didn’t get my questions answered. So I made sure she will be at the next appointment. Then the drive back was bad because by that time, it was rush hour traffic and both kids were screaming by the time we actually made it home. I gave Samuel ambien that night to get him to sleep because he was so worked up. Not the greatest day.So the past few days, Samuel has been really active and a little more upset than usual. But this always happens when we reduce his pump and it usually lasts a week or so. It gets to me after a while, because I hate it when he’s not happy. But it should go away soon. His myoclonus has been a bit better this week. And he did gag twice today without throwing up which is an absolute miracle! My next project is to get him off Pediasure. I’m trying to work out something with information I’ve gotten from other parents of near drowns and nutritionists. Samuel just isn’t doing well on the Pediasure and I hate it anyway. So wish us luck on that front.
Otherwise, all is good. A little side note here. When we getting Samuel’s pump refilled, we had to wait in the hall outside the room for a few minutes because another patient was still in there. The door to the room was open and I could see the mom. I knew her, but I couldn’t figure out why. It took me a few minutes to realize I’d seen her on the news and she was the mother of the conjoined Herrin twins who had been separated recently at Primary Children’s. (www.herrintwins.com) So I peak farther into the room and there the twins were – each in the own little wagon. It was pretty neat to actually meet them after seeing their story on TV several times. They looked like they were doing well and it sounded like they were headed home soon after about 100 days at the hospital. WOW! The miracles of modern science.
Until next week…Keep up those prayers!
Love,
The Jewkes
September 10, 2006
September 10, 2006 | Updates
Another good week of school. I dropped Samuel off at school Monday morning and as I walked out of the school, I thought to myself, “Teresa, you have lost your mind!” And I felt that way. But when I came back a few hours later, Samuel was sound asleep and doing just fine. They said he had a few crying moments, but he got over them and did great. He just fell asleep the last 1/2 hour.
Tuesday, I went with Samuel because the augmentative team was coming to evaluate him. They are a team that will do all they can to get Samuel communicating with us. But they began by trying out about 3 different chairs for Samuel to get him in a good position for participating during class. After all that, he fell fast asleep. I explained to them that I am beginning to believe that is how Samuel deals with being over handled or stimulated. He goes to sleep. They agreed that could be the case and decided they were OK with it when I explained to them the other option would be for him to scream at them :)!
I do believe this is a tactic of Samuel’s, however. Because if he is repositioned or “bothered” too much by his therapists, he will just close his eyes and take a nap. But he doesn’t do it with me. I have a terrible time getting him to sleep. So I know he could stay awake through therapy if he wanted to. He just doesn’t always want to.
Anyway, the team talked to me about several options with Samuel and for now, we will work on teaching him to use the computer with either his head, his hands or his feet. And we will start having him make choices with his eyes by gazing at the things he wants. I know he already has determined that a great way to communicate is with his smile. And he uses that to get more of the things he likes. He also is getting good with his eye gaze and will choose between 2 movies or 2 toys all day long. So we will work on those things and maybe next time the team comes, Samuel won’t sleep through it!
Horseback riding was fun again and his Aunt Kaylee rode with him this time. Again, he fell fast asleep during the ride, but woke up a while later and was so vocal. He is always more vocal after horseback riding - like he is trying to tell us all about it.
Not much more happened this week. Samuel’s myoclonic jerks are still bad after he wakes up for about 10 minutes. He really hates them and so do I. And he has been throwing up more and just overall seems to have a really difficult time keeping things down. I weighed him a few days ago and he is back down to 27 lbs which is a real bummer since I had him up to 28.5 lbs. So I’m working on getting him into the GI clinic to see what ideas they have to make things better.
We’re also working on Samuel’s wheelchair. We found out we have to go through a different provider since the original one we chose was out of network. The insurance said we would have to pay for 1/2 the chair if we used that provider. Out of curiosity, I asked how much the chair cost and they said approx. $6,000. A very astounded “GOOD HECK!” just popped out of my mouth when I heard that! And the insurance lady asked me if I was expecting it to be more. MORE! Wow, the health care system is really messed up if you can buy a car for the same price as a manual wheelchair. But don’t get me started on that!
We have a pump refill appointment this week, so we’ll be asking a bunch of questions we’ve been saving up while we’re there. And our therapies run out on the 15th and then we’ll have to go to outpatient. Hopefully, that will all work out well.I’ve been struggling a little the past few days with some things. We have been out of the house a lot more lately than we have in the past year. And I think I’m finding it hard to “fit in.” There are a few issues. First, I’ve noticed a lot lately how much Samuel defines me. Whenever I’m at a doctor’s office or even at the school, and someone asks me my child’s name, Samuel’s name always slips out - even if they are asking about one of the other kids. And Samuel is always, always on my mind.
It’s not that I don’t love all my kids because I absolutely do. It’s just that Samuel has been such a huge focus for the past 14 months, that I can’t ever seem to get him out of my mind. He is always at the forefront of it. And so much that I’ve learned and that I believe has come from this experience with him. So I find myself always talking about him and always referring to him and the experiences with him. I’ve really had to step back and not say a lot of what I want to say because I’m afraid I’m becoming annoying to my other kids and to people who have heard more than they would like about it. I really can’t explain it, but I’m having a hard time being “normal” again, I guess.
And then there’s the issue of finding Samuel’s “place” in this world. Most people don’t see Samuel as we do. We are with him enough, that we know his personality. We know he’s in there. We know he “gets it.” And I can’t expect others to know that when they meet him or see him. I mean, family and close friends and even many ward members seem to understand he’s in there. But the rest of the world doesn’t see it. And I guess the thing that makes me sad is that other children don’t see it. Other kids are usually interested in Samuel for a few minutes because he’s different. But pretty quickly, he becomes boring. And then they’re off to do their own thing. I can’t blame them. Any kid would be that way, including Samuel if he was still normal. But it tears at my heartstrings because Samuel wants to play with them and can’t because he can’t hold their attention.
Well, I’m just rambling now. But this is just the stage we’re in, I guess. And I’m sure we’ll find our place soon enough. It’s just something I hadn’t expected and I’m trying to work through. But I’m sure I’m meant to learn something from it :).
Keep praying for our little guy. We love him so much and know you do too!
Love,
The Jewkes
September 2, 2006
September 2, 2006 | Updates
Lots to report this week. First of all, school went great. Samuel announced himself by coming in the door on Monday and throwing up! I don’t know what caused it. It is really windy in the mornings at his school and I don’t know if the wind bothered him and caused him to gag and throw up. It could also be that when he initially gets in his wheelchair, he starts moving around a lot and contracting his stomach muscles to try and sit upright and this could have possibly upset his stomach. But despite feeding him a little earlier the next morning, he did the exact same thing only this time, he threw up in the hallway. So Wednesday, I fed him less in the morning, put a blanket over his face on the way into school and carried him into class instead of putting him in he wheelchair and he kept his breakfast down. So who knows? We’ll just have to keep experimenting.The rest of the first day was really good. Samuel laid on the floor during singing time and just smiled away. He sat on my lap for coloring time and even held a marker and colored by himself with me just holding his elbow in place. He was also pinching yarn and other things with his thumb and index finger and helping me glue them onto a picture of himself. He helped me build a Mr. Potato Head and he paid better attention than all the other kids during story time at the library. He got to relax on the floor while the other kids had snack time. But, by far, singing time is his absolute favorite. He nearly starts laughing as he watches the teacher sing with him and the other kids :)!
Tuesday didn’t go quite as well because he didn’t sleep well Monday night. We had to go shopping for school supplies Monday evening and we were out way too late with Samuel along for the ride. So he slept through about 45 minutes of school on Tuesday. But Wednesday was good again and he seemed to enjoy everything once more.
Overall, he doesn’t seem to be overstimulated by the noise or the activities. He is mostly happy when he is there. And the teachers have been extremely impressed with his awareness and attention span. They are also very good to move him from his chair to the floor and to other positions during the 2 hours so he doesn’t get upset being in his wheelchair the entire time. The other kids have been very accepting of him and don’t seem to mind that he is so different. And his teacher is great and very, very organized and in charge of that class. She actually contacted the school district after Tuesday’s class and told them she would need another aid for Samuel’s class because she basically needs someone with Samuel the whole time - even if just to keep track of his cute, but floppy head. They listened to the teacher and got more help. (Seems like I tried to tell them they would need the help a month ago, but I guess some things they will have to figure out on their own.)
Samuel also enjoyed horseback riding once again this week. He loves it so much and fights so hard to stay awake, but usually looses that battle. This week, he rode for about 30 minutes with me on the horse before he finally fell asleep. I wish we could go riding every week because he loves it so much.
I was thinking today that I hadn’t posted that Samuel is finally totally off his tranxene and has been for nearly a month. I haven’t even used it once in that month to calm him down. He has been totally fine without it. So we are now down to using suppositories (which I don’t think will end soon), a small dose of keppra each morning and night and the baclofen in his pump. We will continue to reduce the baclofen slowly until we think there are negative effects. But, I am leery to try and reduce his keppra especially because his myoclonus has been worse since hyperbarics. They are small episodes - mostly right after he wakes up from sleeping. But he hates them and they scare him. And the more upset he gets about the episode, the worse the episode is and the longer it lasts. So, hopefully, we will see them subside and then we can consider loosing the keppra. But that’s a pretty short list of medications considering what we came home with a year ago. Something interesting also happened this week. I’ve been noticing that when I go to replace Samuel’s feeding tube, he will flinch and pull a face when he sees me coming. A few days ago, when I went to do it, he just saw the tube and starting crying. I thought it might be a coincidence, so I put the tube away. Five minutes later, I just pulled the tube out of the drawer and he started crying again. He did that 4 times, so I am certain he knows what it is. Strange that after a year, he has suddenly figured out what it is and associated it with the discomfort it causes.Feeling bad for Samuel, I decided I wanted to know what it feels like to have a feeding tube put in your nose. I’ll tell you what! It stinks! It took me about 6 tries just to get it through my nose. I didn’t even attempt to put it down my throat and past the gag reflex because I knew I didn’t have the will power to do it. It BURNS going in! It’s like that feeling you get if you stick a q-tip too far up your nose – only a thousand times worse. And once it’s in, if you move it at all, you get that same awful sensation. That’s good to know. I’ll be much more careful not to move it or bump it in the future unless it’s absolutely necessary. Wow! I think everyone who deals with those tubes should know how it feels to have one put it. It was quite the surprise to me how painful it is.
One last observation. Samuel is more and more ticklish all the time and his laugh is becoming more and more normal. He is now ticklish all over his body and it doesn’t take much to tickle him. And he laughs out load and more often than he has before. They are both good signs that his brain is continuing to grow new connections and heal itself.
Well, that’s all for this week. Sorry so long! Keep praying!
Love,
The Jewkes
P.S. I posted some new pics.
