I am wondering if anyone has any experience with Botox injections for their child? Gavin's neurologist is suggesting this for him. It supposedly helps with kiddos who have issues with high tone in their muscles.
Gavin is low tone in most of his upper body, which is partly to blame for his inability to have good head and neck control or to be able to sit up on his own. But, he has very high tone (stiffness) in his lower body, due to the stroke that he suffered. This also makes it hard to learn to sit up on his own because he is so stiff. The two in combination are not a good thing! You have to physically bend him at the waist to get him to sit on your lap and it takes a lot to bend his knees, as well, to change him. He always sits with his knees out straight and slides out of a sitting position constantly. It really tires you out to hold him for a long period of time because you have to keep him up in a sitting position with lots of effort. It's difficult to explain, but it would be wonderful if Botox could help with this!
I'm just wondering if this would help? I don't want to put him through the injections if they don't help much. And, are they even healthy to take? If any of you have any info on this, I would really appreciate your help!
Gavin has some other things coming up as well. I have to get his blood drawn to check his thyroid level. He takes daily Synthroid for hypothyroidism, but we are wondering if he is getting too much of the medication right now and this is attributing to his recent weight loss? I'm hoping it's an easy fix like this, because I hate seeing him so thin and not knowing what the problem is!
Gavin's wheelchair is finally coming in tomorrow! It has taken about 11 months to get it in! They call it a stroller and it pretty much looks like one too. It will be necessary to have if he goes to school next year and especially if he rides the bus, because it is transit ready for safety. Don't even talk to me about school and bus riding though! These two topics scare me to death! I am so torn on what to do with him next year! I know that school would be good for him, because he would get so much more therapy from teachers who know what to do for little ones like Gavin, but the thought of sending him away from me when he can't talk or do anything on his own really worries me! Plus, there is the higher risk of him getting sick factor to think about! And riding a bus on his own?! This worries me even more! The problem with driving him to shool myself is that the times are the same times that I will have to drop off or pick up our other boys from school. Anyway, I have time to think about all of this, but I don't want to!
Gavin's P.T. has also helped us in getting some other new equipment ordered for him. It will probably take forever, like the wheelchair, but we are looking forward to getting it. Hopefully they will help to further the progress that Gavin has made over the last couple of months.
We ordered a new chair for him. It's called a Tiger chair. It can raise up to table level or go down to floor level. This will be great for use at the kitchen table and for playtime! Hopefully he likes it better than this chair that we tried him in at his school!
We also ordered a stander for him. He needs this to help build bone strength, since he obviously doesn't use his muscles or bones like an average child of his age. He is also being fitted for AFO's to wear while in the stander. They are like braces to help keep his feet and heals in their right position. The stander that we ordered is different than this one and hopefully he likes it better than he did the one we tried him in at school!
I'd much rather see Gavin happy like this!
So, there are lots of exciting and scary stuff coming up for Gavin! I'm praying that it all works out and benefits him in a positive way! He has really made some exciting advances in the last few months and I can't wait to see what the future holds for him and us!
"For I know the thoughts that I think toward you, says the Lord, thoughts of peace, not of evil, to give you a future and a hope." Jeremiah 29:11