Max & Botox...

Oh yes friend, you heard right...there was no misprint, our little fella got himself some Botox. Now, it isn't for cosmetic purposes or to make him even more handsome (is that even possible?!?)...Botox is actually used for CP patients.

 It is rather fascinating, so bear with me as I explain the process. First of all, there are major side effects to using Botox as a treatment, so it weighed heavily on our hearts...but after much deliberation we felt this was a positive treatment to at least try. Max was set up for outpatient surgery, so it was quick and painless when the doctor put him under to give him 4 Botox injections (one in his hand, arm near the elbow for rotating purposes, foot, and calf). He woke up easily and we were released within two hours. Two weeks later after allowing the Botox to work it's magic, we started a process called Serial Casting.

What happens with CP kids is that they older they get, the more you notice the shrinking of muscles in the affected area. While our bodies tell our bones to grow, it doesn't tell our muscles...the muscles stretch and grow naturally with the bone through movement. 

When you have a kid like Max who isn't walking and isn't stretching the muscles naturally, the tightness of his muscles increase as his bones grow. Botox actually loosens the muscles to make them more pliable. Max's physical therapist would cast his foot/leg in a particular degree for a week to stretch the muscle to match the bone growth.

Now, not every patient responds to Botox...but we were fortunate because Max responded amazingly! For the first time we were able to stretch his right arm out and rotate it...eek! We've noticed him reaching and grabbing more with his right hand. He is so used to being messed with, that he didn't even care one bit about the cast...he just kept on about his business :).

 Max wore a cast for about a month. We would soak it off and unwrap it every Monday...

 Then he would go back in on Tuesday for another cast that would increase the angle of his foot for further stretching.

 Max also got a hand brace that he wears every night while he sleeps. The brace basically stretches the thumb out to help loosen that muscle since his primary response is to keep the thumb tucked into his hand.

 He is always ready to get it off first thing in the morning, but surprisingly it doesn't bother him as he plays or sleeps in bed. You can also see, that we are still pump feeding him all night and now we've added an additional feed in the day to help increase calories and hopefully add a few pounds to his skinny frame!

After discussion with a few doctors and therapists, we decided his AFO's (leg braces) weren't effective.  Therefore, we also had him fitted for a new pair that are a bit more involved...but work fabulously!

I didn't get a good shot of them, but essentially there is a little mini type brace that wraps around his foot and then is inserted into this taller brace...

 The new AFO's have really helped with stabilizing Max more when he stands. Unfortunately, he does get bruises near his knees since he crawls so much rather than walking in them, but they are awesome for standing and using his gait trainer at therapy. Max still sees around 5 therapists at school, but we have put him in outside therapy this year which has been phenomenal for him! He sees a physical therapist for an hour every week and she is so incredibly good for him...

and let me tell you, that boy loves her! He is also seeing a speech therapist for an hour once a week to work on feeding and I'm proud to say he is up to one bite each session :). Since we have seen so much progress with Max having additional more intense therapy, we are currently working on setting up outside occupational therapy weekly. Our weeks can get a bit crowded some weeks when he also has doctor appointments, making him have around 4-5 appointments on top of school...but he and little lady are troopers! With the improvements we saw thanks to Botox, we will also be scheduling injections every 4-5 months to keep his muscles pliable for the therapists to make greater strides. As for the rest of his little world, he is still loving school and church. It is exciting for him to spend time with other kids. He is learning so much and his helpers are doing so well at challenging him and giving him more responsibility for helping. Elaine at church even has Max help lay down the circles for kids to sit on for children's worship...

 He knows exactly what to do...love it! Max still can't get enough of being outside and loves to try and climb everything...

 which can get him into sticky situations at times. He is getting more and more opinionated about what he wants...which I love, but it's really starting to get hard because he doesn't have the capacity to understand yet why he physically can't do it. Max is still our happy, laid back fella when we are hanging out around the house. He still loves to blow raspberries and still parties by himself a lot...

 giggling up a storm with what I assume are his angel buddies :). I think my favorite recent development, has been seeing the way Max is finally making connections to everyday objects. He knows to pick up a spoon and pretend eat, he knows to pick up a comb and comb his hair...

 he is understanding key words in our vocabulary and will often follow simple commands like let's go upstairs and go take a bath...he will head to the stairs to climb up with me following or crawl towards the bathroom. It is exciting for our family to watch him grow and am thankful for siblings who are patient with him when he has one of his temper tantrums. I especially love how both Zoe and Kason are adamant that whatever we do, Max is doing it with us! Even though it seems a little weird for my 4 year old son to have Botox or that all these therapies and doctor appointments can bog me down at times, I'm excited to see the way they both increase the quality of his life and allow him to physically do more :).