Well, this past week has had ups and downs. Kaden was very tight on Sunday and Monday of this week. Miki and I know there will be highs and lows in Kaden’s tone so we need to remind ourselves that it is only the beginning. Because of the medicine and the muscle tightness Kaden has had issues going to the bathroom and when he gets backed up he gets even tighter. Turns out that that was the issue earlier in the week. He has been much better since Wednesday morning.
Kaden had his second post-op appointment today. Thanks to Papa for going with. It’s always easier having another adult there for the appointment. He only saw the nurse today and she increased his dose again. Now we are up to 190 micrograms every 24 hours. This really doesn’t mean anything to me, but, I did find out today that there are kids that receive 400-500 micrograms a day. So, that being said, we are already seeing some results and he still has a lot of room to increase.
One issue that has arisen since the surgery is some weakness in his voice control. When Kaden gets tired around late afternoon his voice starts to stutter and break up. We had heard this when he first started getting tight two years ago but it didn’t last long. It always freaks me out. We got a chance to see his speech therapist today and she said it may be the muscles starting to loosen and fatigue from trying to use those muscles that are now somewhat loosened. She was very thorough and called Kaden’s doctor this afternoon and got confirmation that it wasn’t anything to be concerned about. We just need to be vigilant in keeping an eye on his eating and making sure that he is not struggling to chew and swallow as the muscles loosen. It’s kinda like learning to eat and talk all over again but he is doing well so far.
Kaden has been going to therapy all week and has done well considering the incision and the slight changes in muscle tone. Next week we are adding an hour of physical therapy which we have to fit into an already hectic schedule. Hopefully we will find the time to add a third the following week. We’ll see.
Kaden got to where his costume for the first time on Wednesday at school. We are going to a Halloween party tomorrow night at his therapy place and trick or treating on Sunday. We’ll be sure to post some pictures. Kaden is always very excited about his costume. Hope everyone has a Happy Halloween!
Thanks for the update. Sounds like you have a lot on your plates! I can't even imagine. I will continue to pray for each of you. I hope Halloween goes well. I can't wait to see Kaden in his costume. Hugs, Linda Evans