I am so darn proud of my son, I have never seen a child so determined in my life! Today we had a few appointments in Portland and met with Urology as well as the Orthopedic surgeons (looking at Isaac’s spine and hips). There was no change in his spine, the Doc said eventually he will need surgery when he is done growing (I say we will cross that bridge when we get there). They did notice his hips are almost out of socket but there is really nothing they can do for him right now. Boy, I am so glad he doesn’t have feeling in his lower extremities, ouch! On a positive note, it is so nice to know that the work I do with him at home and the things the staff does at school makes a difference. To leave these appointments today not shedding a tear felt amazing. I may not be 100% all the time, but I give my son the best, he deserves to have every chance at a better quality of life. I feel so blessed that I was chosen to be Isaac’s mom:)
While meeting with the Urology nurse, Isaac had lots of questions and concerns about cathing in his chair, after troubleshooting we figured out he didn’t want to get his chair dirty. We put some towels under him and reassured him that all would be fine. The nurse left to get supplies and while she was gone I read Isaac a book titled, “Ethan can cath”. Isaac was so brave, he learned really quick and was able to get a good stream 2 times. The steps we are taking this week towards his independence are hard, but very necessary. I can’t imagine being his age and having the worries that he does, yet he does it with a smile.
Surgery is tomorrow and as he was getting ready for bed, he began to weep, he is worried we will not make it home for Christmas. So if you think about it, pleases say a prayer for Isaac, and all the other kiddos who are spending their Christmas break in the hospital. I am trying to remain positive, but of course I am human and have a mini panic attack every now and then. I have to quickly remind myself that he is in God’s hand and everything is out of my control, so I wait and pray:)