Archive for February, 2007
February 27, 2007
February 27, 2007 | Updates
Sorry, time keeps getting away from me. I should post more often so my posts are shorter! I tend to ramble. Anyway, Samuel’s pump refill went well. We are right at 400 micrograms per day with this reduction. Another 5 months and we should be down to zero - depending on how he tolerates the decreases. He’s had a pretty hard time with this last one. It’s been strange because he is suddenly tolerant of so many exercises that he just wouldn’t allow before the decrease, yet you can tell he has higher tone when he’s upset. I keep telling myself that within a month, the tone will pass. It always goes this way when we reduce his pump. We just don’t enjoy it. It even goes so far as to give him a bit of a fever and cause him to start spitting up all the time again. But it always passes within a few weeks, so we just need to hang in there.We got some bad news this week. Our physical therapist is moving to Oregon. Bad news for us, not for him. He’ll be working in a children’s hospital there. He’ll love that. But we went through 4 physical therapists before I found one I liked, so it’s hard to see him go. However, now that we are in outpatient therapy, we have more options. So we can now go to a pediatric therapy place that our insurance didn’t allow when Samuel was homebound. So, it should all work out. Thank heavens! I don’t know what we’d do if we couldn’t go there because our PT is about the only therapist we have that I feel good about paying at this point :)! But this new place should be good and they can offer us PT, OT and speech at one place.
We also had another meeting with Samuel’s school to readdress his goals for this year. Apparently, he passed them off again. Go, Samuel! This is the second time this year that he has passed off goals that were supposed to last him the entire year. And I LOVE that his teachers are proactive enough to ensure new goals are set in place for him. They take such a strain off me because I don’t have to worry about what he is accomplishing at school and I can just worry about what we are doing at home.
They also found a communication device that they want to try with Samuel. I’m really hoping it will work for him. How great would it be for him and us if he could communicate with us?! It’s basically a board with pictures and a switch he can hit to choose the pictures he wants and once he chooses one, the board talks. It can say anything from, “Hi” to “I want to go to Disneyland!” It will be neat to see what he can do with it.
The only thing that really surprised me was the vision assessment that they did with Samuel. They indicated that his vision was at a rating of about 4 on a scale of 1 to 7. I think it’s better than that. But it doesn’t really matter because it just means that he will get vision therapy, which certainly can’t hurt. There were a few things they said that made sense - like he doesn’t seem to pay attention to things that are farther than 5 feet away. I don’t think that he can’t see them, though. I just think it takes more to get his attention because I can stand at the top of 2 flights of stairs in our house and smile at him and he will smile back. They also said he pays attention to higher contrast pictures more than others. I’ve noticed that too. He loves the color red. And they said he isn’t interested in looking at himself in a mirror. But he has a mirror in his bed and he looks at himself all the time in it, so he probably just wasn’t interested that day.
Anyway, that’s about it. We’re just plugging along. We’re seeing small improvements in his crawling. Nathan, on the other hand, is cruising around the house on all fours. Seems a little unfair :). But he is a delight and a very good kid.
Keep praying. Crawling and eating are still our goals. Let’s hope we reach them soon.
Love,
The Jewkes
February 15, 2007
February 15, 2007 | Updates
Well, we went to Samuel’s EEG as planned. We drove to Salt Lake where they proceeded to attach tons of wires to his head with, of course, glue. Samuel was a little upset that they were messing with his head, but we were able to get it all done without any crying, just a lot of wiggling. They then wrapped his head in bandage wrap and tape to keep the leads on his head. Then they told us to get him to fall asleep. Ha! Ha!
They had warned us when we made the appointment to sleep deprive Samuel because they needed him to come to the hospital, fall asleep and then wake back up within half an hour. I literally laughed out loud when they told me that! I explained to them that if this kid has the right notion, he can stay up for days on end. And getting him to fall asleep at the drop of a hat, well, can any parent do that with their 3 year old?! So we did our best and kept Samuel up until 1 am the morning before and then we didn’t let him sleep on the way to the hospital. We also planned the appointment during his regular nap time and fed him as soon as we got there since that seems to help him feel sleepy.
Well, he wasn’t acting sleepy, he was just wiggly. And within about 5 minutes, he had scooted clear down the bed and the leads and wrap and tape were starting to come off. So I went to find Tom (who had gone to the cafeteria) so I could give him Nathan and the nurse sat with Samuel until I got back. And guess what? She got him to sleep within about 10 minutes! I was impressed to say the least!
They let him sleep about 10 minutes and then we woke him up. And guess what? No seizures. The kid ALWAYS has seizures after he wakes up, but not this time. Maybe he wasn’t in a deep enough sleep. I don’t know. We did catch one startle seizure, though. And I about gave the nurse a heart attack trying to startle Samuel to cause a seizure. It was actually pretty funny cause she knew I was going to blow into the room at any second in an attempt to startle Samuel, but when I did, she nearly collapsed and Samuel just looked at me like I was crazy. What a kid!
We didn’t get the results from the EEG until today. The doctor explained that the EEG records electrical charges in the brain and that everyone’s brain works by sending out electrical charges. Samuel’s brain waves all seem to be there. They are, however, a bit slower than you would expect in a child his age. And then there are some eratic charges throughout his brain. Some are centralized in certain locations. Some are more generalized throughout the brain. None of them indicate severe seizures, but they are there and they are eratic and they do indicate that he could be suffering from seizures.
So, the doctor asked what we want to do since his Keppra doesn’t seem to be controlling them. I told him that this may be a fluke thing, but since I have been giving Samuel more flaxseed oil over the last week, his seizures seem to have settled quite a bit. The doctor said that many children with severe seizures are placed on a high fat - low carbohydrate diet that almost always reduces their seizures. So, it very possibly could be helping to give him the flaxseed oil (omega 3 fats). We have been giving him 1 tsp a day, but I want to raise it to 3 tsp and day and we could possibly raise it to 6 tsp a day without causing any bad side effects. I told the doctor we would hold off on any medication changes until we tried more of the flaxseed oil to see how well it helps. So, let’s hope it helps enough and we can avoid any sedating seizure meds.The only other thing we’ve really done lately is gone to the dentist. That was quite the ordeal for Samuel. They had to prop his mouth open and scrape off the tarter from his teeth. He was NOT happy. But his teeth are sparkling white again. I asked the dentist about the overbite Samuel is developing and the one crooked tooth he has in the front of his mouth and he indicated that is caused by all the thrusting forward Samuel does with his tongue. The dentist said that even with normal children this age, he wouldn’t do anything about that and that hopefully, when Samuel’s permanent teeth come in, he will be past his tongue thrusting stage. Let’s hope by then he’s eating and talking, too. Wouldn’t that be great?
So, we’re headed to Salt Lake for a pump refill this week. We’ll avoid all cardboard boxes on the way. Hee! Hee! Our friend, Tori, has returned from her trip to China. Everything went well and if nothing else, the intense therapy she received there helped loosen her limbs greatly and has given her more control over her arms. You have probably seen her on the news or in the paper. She is quite the popular young lady!
Thanks for all your prayers and support. Keep praying and keep the faith!
Love,
The Jewkes
February 4, 2007
February 4, 2007 | Updates
Another week gone by. I don’t know if you all realized that a few weeks ago we passed the 18 month mark since Samuel’s accident. It is such a strange feeling to know that we are that far out from that day. I can still remember that day like it was yesterday and yet, sometimes, I struggle to remember what he was like before his accident. That makes me sad, but I also realize it is a gift as the pain that followed me around those first 6 months was not something I could have endured forever, so I have allowed it to happen to make life liveable again.This week we visited the NACD to review Samuel’s home therapy program. My biggest concerns were that he is still not eating and he does not seem to know how to use his hands much to help him in the crawling we are trying to teach him. They told us that the answer to teaching him the use of his hands and to teach him crawling is the slide that we made him a month ago with foot and hand holds. The slide is in his room and we have it at an incline so that it is easy for him to move himself forward since he is facing downhill. It also has holes in it where he can put his feet and hands to help pull himself along. But he so hates the slide (of course)!
The NACD suggested that we incline the slide upwards so that Samuel is pulling himself up the slide. That may give him more feeling of being in control. So that is what we will do. We are also padding the slide to make it less hard so it will be more comfortable as we work with him on it.
The feeding is a whole different issue. They suggested we feed him even more than we are. And that is what we will do. But it is hard. One day this week, he ate 1/2 a cup of yogurt which is a record for him. But since that day, he has literally refused to eat! He will turn his head and throw his arms at you and block his mouth by sticking out his tongue. It is nearly impossible to get anything in his mouth and if you do, he pushes it right back out. It’s frustrating!
There are a few other things I have noticed with Samuel lately. He seems to be over the recent pump decrease. But he also changed in that he needs to be stimilated constantly or he is unhappy. If he is not doing something with someone or watching TV, he is upset. He used to be happy to lay on the floor and roll around for at least a while, but this seems to no longer be the case. I don’t know if it’s a good or bad change, but it is definitely a change.
He also seems to be just a bit spoiled. We have not disciplined him at all because, well, how would we even go about doing that? But he seems to more and more be giving us the signal that he WILL NOT be participating in things that he does not enjoy. I wish we could just give into that, but much of what he needs to do to get well is not stuff that he enjoys. The NACD suggested “time outs”. I was pretty sure I couldn’t do that, but said I would give it a try.
So, we have a portable crib in one bedroom where we can shut the door and it would be very boring for Samuel. During therapy the last few days of the week, if Samuel refused to participate, we would tell him he would be getting a time out if he didn’t and something fun if he did - like we would throw him in the air or swing him. Well, we did time out once (for just about 5 minutes) and Samuel participated great from then on. I’m sure there will be other times when we’ll have to do time out. But it’s not mean, just boring for him. And he doesn’t like boring. And the fact that it’s working tells me that he does understand all that we are telling him. He just needs a little push to keep working hard. Wouldn’t we all!
We have an EEG scheduled this week to see what we can learn about Samuel’s seizures. Hopefully, we can find something to help curb them as they are getting worse. They seem to be the same as far as frequency and duration, but he is turning very pale with many of them.
Please keep praying!
Love,
The Jewkes
