What a week....we had some major highs and major lows and I for one am drained. Add to all of Jake's issues this week, Luke came down with strep throat today. While I know he doesn't feel good, he is adding in some extra drama every time I walk into room. It's made for a fun weekend. :-)
I'll start with the good stuff.
Jake's fifth grade class has been studying the major systems of the human body in science. In groups they had to do some general research on one system, pick three diseases that could affect that system, and finally talk about how one of those diseases might affect a fifth grader. With his modified schedule, he's only been in class for some of this, so it's a project he's been working on at home with his tutor. Jake was assigned the circulatory system and choose to talk about how a brain aneurysm could affect a fifth grader. He and his tutor did all the general research, then I helped him with his story. He dictated in his own words what happened and then he made a list of the ways it has affected him. He decided he wanted to include some pictures and went through and picked out the ones he wanted to share. He got really emotional looking through all the pictures and said it was hard to think about all that time in the hospital. I was so proud of him for not only being willing to share his experience with his peers, but being really honest about some of the more personal ways all this has affected him; especially the things that may not be obvious on the surface. When he practiced at home, he often got a little emotional and was worried he might do that in class. He presented on Wednesday and from what I hear from his teacher, he did a great job. Not only did he do it by himself (the others were presented in groups), but he got through it without getting emotional and the class was really engaged. His teacher was ready to step in and help if needed or to field questions, but Jake handled it all really well. It warmed my heart to hear his teacher describe it all to me, so proud of that kid! If you'd like to see the story portion of the presentation, you can view it here.
The next good thing, quickly nose-dived. Jake's final cast came off Thursday morning and he got his new leg brace. He was so excited and really thought that casting for five weeks and a new brace was going to make a major difference in his walking. Epic failure on my part not preparing him for the adjustment to walking without the cast. I've never had a cast so it didn't really register that it would take some time getting used to walking with the cast being off. (Logic should have kicked in on that one.) Anyway, his walking has really regressed and it's a huge struggle for him. I think the difficulty he's having is also causing some excessive tightness in his legs which isn't helping anything. After we got home from the appointment, he was in tears because the stretching hurt and he felt the casting didn't work. Jake is usually pretty positive so when he gets down you know he's really discouraged. He was also bummed when he got home from school later that day...he missed a lot of recess because it took him so long to get outside. Adding insult to injury, his fifth grade music performance was the same day and he needed quite a bit of help getting around. Watching him go through this was too much for me and I spent a good portion of Thursday afternoon and Friday morning in tears. The one positive of all of this is he didn't let his mobility issues keep him from being part of the performance and just did the best he could. He had a huge grin on his face while his class played their music which was so good to see. The school pulled out the the adaptive bike again on Friday to make things a little easier. (He hasn't needed it since before Christmas.)
So for now, 2-3 times a day we're stretching, doing extra exercises and walking on the treadmill. I know it will improve with time, but it so hard to watch him hobble along and see his frustration.
Extra prayers would be much appreciated:
- For the exercises and stretching to do what they need to help him walk easier.
- Give Jake the motivation to keep fighting and the belief that all the therapies and exercise do help.
No comments:
Post a Comment