Archive for June, 2007
Guess where we’ve been???
June 21, 2007 | Updates
This week, Samuel took the longest trip of his life so far. We drove as a family to Spokane, Washington, to visit Tom’s brother. His brother and sister-in-law and their son live on Liberty Lake in Spokane. It is a beautiful little lake and they are just a few steps from their own little dock. They have a boat and a little paddle boat and some canoes. It is a beautiful place to wake up in with a nice little guest house that we were able to stay in for nearly a week. It was heaven. And best of all, I didn’t touch a computer once :)!
Samuel faired the 13 hour drive each way marvelously. He would get tired the last 3 hours, but by then it was late at night so I would give him something to sleep and he would sleep the rest of the way. He also slept very well each night sharing a room with Tom and I. And he was able to spend a little time down by the water and a lot of time just being around us all. The other boys got to spend hour after hour playing on rocks and sand and water and in canoes and with their cousin’s toys - which are always better than your own :)! Tom and Tanner got to go golfing and I even got to spend a day shopping for clothes. Anyone who knows me knows that I probably can’t remember the last time I did that. So it was fun to spend hours shopping with my sister-in-law and mother-in-law. And poor Samuel had to go with us. But he was very good and smiled at the hats and glasses we tried on. And true to form, he would always indicate to me that he preferred the green blouses over the brown ones and the red ones over anything else. What a cutie!
So, we just relaxed away and did mostly nothing - which is EXACTLY what we needed. One thing we did do is eat well for a week. We ate out a few times and the rest of time, our hosts cooked us fabulous meals. I think we all gained a few extra pounds, but they were worth it. Samuel even showed some real progress in his eating. The last place we ate on the way home, he really went to town sampling the things we were eating. He had thousand island dressing, butter, honey, corn bread and gravy off my chicken fried steak. And the amazing thing was he really wanted it and he was even sucking the food off the end of a metal spoon. First off, it is nearly impossible to get anything in his mouth even for a second. Second of all, it is amazing when he will let you leave the spoon there long enough for him to suck on it. And third, a metal spoon! It was great and I was really soaking up the joy of watching him enjoy food again.
This morning as I fed him through his tube, his mouth was moving like crazy like he really wanted me to feed him the food through his mouth instead of the tube. And his teacher at school said he did well with eating today. This afternoon, he wasn’t as into it. But I sure can see some progress and really attribute it to the last set of hyperbaric treatments and our new speech therapist (who we get to see tomorrow and tell her the good news)! It’s always nice to find a therapist you love.
Otherwise, not too much going on. We have some therapy and doctor appointments this week. Hopefully they will go well. We’ve had a few interesting appointments with our therapists the last few weeks. I think it just takes time with new therapists or doctors to let them know that you don’t mind them mentioning the possible down sides of having cerebral palsy, but that you really don’t want to dwell on them. Since our therapists are fairly new to us, they seem to feel it necessary to ensure we know that Samuel WILL loose all the range in his ankles someday and he WILL get scoliosis and he IS stuck in the pre-crawling stage and may never progress any further and blah, blah, blah. I know all that stuff is more likely to happen than not when a child has severe cerebral palsy. But Samuel is not the norm and that stuff is always in the back of my mind and I am always watching for it. I just don’t feel like dwelling on it. The funny thing today was they suggested that we start going back UP on his baclofen pump medication to help reduce his arching. Ha! That is really when you start to miss the therapists who have seen him at high doses of baclofen and know that it didn’t reduce the arching at all, it just reduced every other possible movement Samuel had. I tried to explain that to our new therapist, but it just isn’t “typical”, so I really don’t think he believed me. Oh, well. He’ll just have to take my word for it because we certainly aren’t going back up just to prove a point :)!
Oh, last thing. Funniest thing happened the other night. Samuel was wide awake and laughing - belly laughing - in the middle of the night. It woke me up and I thought he must be crying. But when I went to check on him, he turned to me with the biggest smile and let out this great laugh! Man, oh, man, I wish I could be in his head sometimes! Keep praying! I’ll try to post pictures tomorrow.
Love,
The Jewkes
The joy of life…
June 13, 2007 | Updates
Well, we’re all feeling better - FINALLY! I took Samuel to the doctor about a week ago and we got him on some antibiotics. I don’t know that he needed them for sure, but I think the doctor wanted to be safe instead of sorry and I agreed. Samuel seemed to feeling better a few days ago, but was still just so groggy. I waited several days and then decided it had to be the increase in the Neurontin. So, yesterday afternoon, I reduced his dose down to the amount he was receiving before he got sick and within a few hours, he was himself again. So, we won’t be able to go up on the Neurontin anymore unless we want him to sit around with his eyes half closed and half asleep for the rest of his life. Sometimes the seizures aren’t as bad as the medication side effects. Bummer, though, this means that the search for something to control his seizures continues.
Our appointments with our “temporary” speech therapist the last few weeks have been exciting. If you recall, our speech therapist quit working for the therapy center we attend, so they have been looking for a new one for a couple of months now. In the meantime, they got a lady from the USU speech lab to come down and fill in. She is awesome! We have learned more from her in the last 2 weeks than we have learned from all our speech therapists in the last 2 years. I firmly believe that if we had seen her 2 years ago, Samuel would be eating by mouth by now. So, we are pretty excited at some of the things we are seeing.
First, she explained that kids like Samuel refuse food because they are instinctively trying to protect their airway. They can’t coordinate breathing and sucking and swallowing at the same time. So, when we put things in their mouths, we are compromising their airway. So, we have to start by teaching them to relax and breath while they are being fed.
We started by giving Samuel more control over what is happening with his mouth. We let him know what we are doing before we do it and we let him touch whatever we are putting in his mouth with his hand before it goes in his mouth. We also back off if he is upset and give him a second to calm down before trying again. Just these two things have made a HUGE difference. It seems that since he has some control over what we are doing, he is more willing to trust us to try things in his mouth. Makes sense.
So, he is being much more tolerant of us touching his mouth and putting small tastes in there. It still takes a ton of work and a lot of watching his facial expressions to get the tiniest amount of food in him, but it is much better than before. And, yesterday at speech therapy, he actually sucked on the end of a pretzel stick. It was the first time I have ever seen him close his lips around anything and suck, so I was pretty excited about it.
Oh, and we finally got to give Nathan a little birthday party. He was very interested in all the toys and smeared blue icing all over himself from the cake. He had a good time. It’s crazy to think that he is one already. It seems like just yesterday that I found out I was pregnant. Time certainly does fly.
In closing, I just want to thank you all for your prayers and support. It is coming up on 2 years since the accident and that is a hard thing to stomach. A lot of the original feelings about the accident have subsided and floods of emotion don’t come as often as they did, but they are still there. I still don’t watch the old home videos or look at the old pictures because it is just too difficult. I have come to love the new Samuel just as I did the old one, but I still miss the old Samuel tremendously.
I reread a book the other day, “One Tattered Angel” by Blaine Yorgenson. I would recommend that book to anyone. It is truly wonderful. But I have to tell you I sobbed and sobbed through it because it hit so close to home. I had read it a year or so ago, but it was even more applicable to me now. There are so many times that people compliment me or tell me what a neat thing it is that I take care of Samuel. I have not known how to explain to them that it is a selfish endeavor on my part. I get such joy from Samuel and I do not know how to explain it. In Blaine’s book, he asks his wife how she can deal with the daily monotonous care of their disabled daughter. Her reply hit deep in the heart of my soul. She said,
“I think the most powerful force acting on me is Charity’s (their daughter’s) love. I’ve never felt or experienced so much love in all my life as I feel when I am with her. Though sometimes I feel totally weighed down with the burden of it, I never go into her room but what I am almost magically rejuvenated by the magnitude of her love.”
That is how I feel about Samuel. From the day he was born, his smile could lift me out of the deepest despair. And it still can. There is not a day that goes by that he does not remind me of the joy in life and the great opportunity I have to care for him and to be a part of his life. He is a miracle and one of the best things in my life. And any burden of caring for him is worth the joy his spirit brings to our home.
Please keep praying for continued improvement. How I would love to see him crawl or eat or how I would love to hear his little voice call me mom! Thank you to everyone.
Love,
The Jewkes
Seizures, School, Sick & Shrek
June 4, 2007 | Updates
Well, this week turned out to be…annoying, I guess. Samuel had a seizure Tuesday morning and one again Wednesday morning. We still attended his preschool graduation, but he was not real happy about it because he was so tired from the seizure. You can tell by the look he is giving me as I try to take his picture.
And then… Four of us got sick :(. Little mister Nathan picked up a nasty cold somewhere and kindly passed it onto Samuel. Then I got it and Tom got it and the stupid thing has hung around for nearly a week now. Each of us faired a little differently with it. Nathan had a runny nose and was in a bad mood from about last Wednesday until today. I just felt extra, extra tired and had the nice and fun itchy nose and throat and ears and face - ugh! I sneezed and sneezed until I thought I’d die and just when I thought the cold was about gone, I coughed and coughed all last night and couldn’t sleep. Tom has felt awful and again, we are about 4 days into this and he felt worse today then he has so far. But I think poor Samuel got the worste of it.
About Thursday evening, I noticed something just wasn’t right with Samuel. He was very tired and holding still a lot more than usual. By Friday morning, I knew he didn’t feel good. So we just let him hang out and take it easy. In fact, he’d been in a pretty bad mood for a few days, so we’d been letting him off the hook with just about everything. He got to spend one afternoon at the little zoo near our house and another afternoon going to the movie with Aunt Kaylee. I thought it was the reduction in his baclofen causing him to be upset, but now I realize it was the onset of his cold.
Poor little guy had a nasty fever for most of Saturday and Sunday. He didn’t hardly move for 2 days. We took him for walks and let him lay outside and let him just relax, but he obviously felt awful. Today, he felt well enough to get on the floor and roll around a bit, but that didn’t last long. Tonight, I put him in the car and took him for a long ride because I could tell he was just sick of being in the house. He’s now fast asleep and I hope tomorrow will be better. He is more “twitchy” because of the fever and cold. Any stress like that makes him more prone to seizures, so I have been very careful to make sure he is sleeping A LOT! He seems to be getting over it on his own, though, so that’s definitely a good thing.
The one really fun thing he did do this week was go and see Shrek 3. He loves both of the Shrek movies, so I sent him to see the new one with Kaylee. Kaylee said he started smiling the minute the movie started and he didn’t move the entire time. He just smiled and enjoyed the whole show. One of the parents behind them even asked her how in the world she got him to sit so still through the whole movie when his kid was bouncing off the walls. My wiggly little man must have really been enjoying himself to hold that still.
So, that’s about it for this week. Not a real fun one (we even had to cancel Nathan’s birthday party), but I can’t complain. It’s nice that Samuel can get over such a bad cold on his own. We haven’t even needed to use any oxygen to help keep his stats up. That’s a pretty amazing thing for kids like him and says a lot about how healthy he is.
Pray that he’ll feel better soon, though!
Love,
The Jewkes
