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
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June 24th, 2007 at 10:02 pm, Natalie Says:
Hey, Teresa and fam. I am so glad you got to get away. Sounds like you had a great time. I’m so happy to hear Samuel did so well. Your post just made my day. And amen on all the ‘new therapist’ stuff. I think Brea’s therapist should just be glad that she’s not gagging whenever we TOUCH her face let alone get a spoon anywhere near her mouth. Oh, well. Just another one of the fun things that keep us on our toes! Take care and have a wonderful week.
Love ya.
Nat