Botox and Beyond

It's been since St. Patrick's Day that Jones had his first Botox injections. Now that I have a bit of perspective, it was a good time. I was ready to either throw up, pass out or have an anxiey attack...simply walking into the Children's Hospital is upsetting enough but the smell in the treatment rooms and all the equipment just brought back a lot of unpleasant thoughts...and I like hospitals! The nurses and Dr. McLeish (Jones' Rehab Dr.) were all so great, and of course Tom was very supportive. Jones handled everything like a pro. We did decide that a light sedative would be best for him. I totally needed it more than he did!!! It made him floppy, drunk-like, very kissy and giggly. We all joked that green beer would not be good for him. He got 17 shots of Botox, in his hamstrings, pecs, biceps, elbow area and palm of the hand. He hardly seemed to notice. We were fine to go home about an hour afterwards. After it all, I was again reminded that God brings us through all things just fine. I was all worked up and it went so smoothly - I was seriously disappointed in my faith but, I'm working on it. So, we (and other people) have definitely noticed his arms & hands and legs are a lot looser, he's using them more. We are stretching him all the time so that his muscles will lengthen and be freer to move for him. The idea behind the Botox is that for adults and children with high-tone, it relaxs the tight muscles so that the weaker muscles have a chance to strenghten and overcompensate. We've seen him reach for more objects, it's been most apparent in his hands.

The chiropractor I've seen seeing wanted to see Jones so I took him in for evaluation, that ended up in an adjustment. Immediately Jones had even more of a decrease in tone and just seems more alert - even by neighbor's account?!?! Even more amazing is that after his nap that day he started to do things with his arms he's never done before, such as when on his tummy, he was able to pull his left arm up - a critical ability to push up to sitting and other positioning. He is giving hugs, playing with toys in new and fabulous ways. We are so encouraged.

He has also started wearing AFO's (ankle foot orthodics = lower leg braces) and a neoprene trunk brace. He looks like he's going scuba diving with the trunk brace on! Both really give him a lot of stability when sitting and walking. Although it's sometimes hard to see him with all these gadgets - glasses, thumb splits, trunk brace and AFO's...I just remember that they are all helping him and we are thankful he's at a developmental place that they can help him. He is a super trooper through it all, smiling and laughing.

That's the other thing...having to say "No, Jones!" He wants to be naughty when he can. I had to tell him not to stomp on Gretel (my Mom's dog) after he kept doing it and doing it. I then realized he has never attempted to step on Nina (our dog). It's crazy to think that somehow he's figured out that Gretel can handle it (probably likes it) and Nina cannot, very preceptive! He's a joker and loves to get me all excited by pulling my hair, hitting my face and now his new trick is to push dishes close to or even off the table to get me to gasp...see the YouTube video here,

One last note. Tom and I went to a City-Wide Worship Event last where I saw an old family friend who prayed with me about Jones. He prayed that God is the Name above all names, above Cerebral Palsy and another diagnoses or ailments. I had never thought in those terms about God's name and am so touched by the incredibly deep dimensions of God and how we will never be able to see him in his true form, but keep getting closer as we approach him.

I'm just reading over this post as I wrote it awhile ago and just didn't get around to sending it. A few updates : The trunk brace was causing some acid reflux so we haven't been using it much. Next week we will be starting to work with the Waisman Center's Communication Development Program, to help Jones' speech. Our neighbor runs the program and has asked us if we would consent to being videotaped for a webinar they will use to educate all the Birth to Three Speech Therapists in the state. If I'm able to get the link to it once complete I will share it.