Ryder: A Medical Update

I haven’t updated on Ryder’s health in a while…so here goes.  Fair warning, this will probably be a long one! 

Ryder outgrew his last SMO that he wears on his foot, so it was back to his Orthotist to get molded for a new one.  Ryder loves Dr. Jim and everyone at his office, so even though he has to get a cast put on and then cut off, he does so good when he goes there.  This time was nothing different, he sat so still and let them do what they had to do, of course asking questions the whole time about all the different tools.  His favorite part about seeing Dr. Jim is that after his appointment he always asks if he can go see the workshop, and who can ever say no to Ryder?!  Dr. Jim asks Ryder every time if he’s going to come work for him when he is old enough!  We got to pick the colors and theme of his new orthotic, so it should be no surprise that this is what we went with:

It’s camouflage!  A new orthotic meant we had to go shopping for new shoes.  It’s such a challenge trying to find the right shoe to fit this thing.  It has to be wide, the insole has to be removable, the laces and tongue have to be able to come completely loose, has to be low top, and we usually have to go up about 2 sizes from his normal shoe size.  His right foot also has an insert that goes in it for some ankle support, but it’s not even close to as big as the left side, so going up 2 sizes on the right foot always makes me feel bad because it makes him so much more clumsy (as if he really needs help in that department!).  The only solution would be to buy 2 pairs of shoes in different sizes, use the bigger size for the left and smaller for the right…which I just can’t bring myself to do (who wants to spend $ on two pairs of shoes but really only get one pair?!)  I’m going into detail about this because we had a small victory in our new shoe shopping escapade, and I love to celebrate those!  Okay so we went shoe shopping, as if bringing both kids to a shoe store isn’t hectic enough, me & Alan are searching the shelves for the perfect shoe that met all of the criteria above PLUS it had to be cool…of course.  We’re checking the Nike’s, checking the DC shoes (which is the brand we’ve always had success with in the past), when we hear this little 2 yr old voice saying over and over “what about these? I like these! How about these ones??  I’ll get these shoes guys!”  Ryder was desperately trying to show us these bright red Lightning McQueen shoes that light up when you walk!  I know me & Alan were both purposely ignoring him thinking “there is NO WAY our child is ever wearing those hideous shoes!” BUT he wasn’t letting up so we agreed to let him try them on (both hoping the orthotic wouldn’t fit so we’d have our easy way out)…but as luck would have it, the orthotic fit perfectly, and good thing because he was not going to let us take the shoe off just to be assured that he was getting those shoes!  We went ahead and put the right shoe on too (2 sizes too big) and as he started walking he quickly pointed out that the lights weren’t working on the right shoe, and this was NOT okay.  The nice saleslady checked in the back to see if they had another pair that size, but they didn’t.  They did however have one size down, so we tried so hard to shove his orthotic into the smaller pair, which wasn’t happening, but in the process Ryder pointed out that he didn’t want that pair anyway because on that pair the LEFT side wouldn’t light up.  By this time Maisy is climbing on shoe shelves knocking everything over, Ryder’s upset because he wants these shoes so bad but they aren’t working right, we’re about to just throw in the towel and give up the search, when I decided to just ask the question…”Since you’re probably going to be sending these 2 pairs of shoes back since one shoe in each pair has defective lights, is there any way we could buy one of each, since really we need the bigger size for the left and smaller size for the right and those are the ones that the lights are working on?”  She said she doubted it but that she’d atleast ask her manager.  When she came back and said YES I thought I was going to cry right there in the store.  We had a happy boy, a happy wallet, the right (wrong) size pair of shoes, and somehow these hideous shoes had now grown on us.  Like I said, it was a small victory, but that’s what keeps us going on this crazy journey! 

Ryder’s left leg has a lot of tightness in his hamstring area, similar to the tightness in his left arm.  It’s less noticeable because he’s walking around and his leg is covered, but it’s part of the reason he walks with a little limp.  The tightness in his arm & leg has been something his Physiatrist has been monitoring, which has led us to his upcoming Botox procedure.  It’s scheduled for March 13th, he’ll be put to sleep and they’ll use electrodes to figure out exactly which nerves are causing the spasticity in his arm & leg.  Then they’ll inject Botox directly into those muscle groups, which will temporarily paralyze the nerves, hopefully giving him more range of movement.  The Botox lasts for about 6 months, so in that time his therapists will be working hard to get better function and placement in his left arm and left leg.  The thought of him being put to sleep again is not something that sits easy with me, and to add injections of a toxin (that is not FDA approved for use with CP patients, ugh) as another factor, obviously I’m not taking this well.  I don’t even get my children the flu shot!!  There are some really serious side effects, Google told me all about them and sent me straight into a panic, but his Doctor and therapists (and anyone else I can possibly ask) has been very reassuring that the risk is low, and Ryder is a great candidate for the procedure.  Most importantly that following through with this now could possibly prevent some major surgeries he could be faced with in the future that would involve lengthening his tendons.  So with that said, I’m moving forward cautiously and God is holding on to all of my fear and anxieties as He helps us through this.  Ryder has a pre-op physical scheduled for the 9th where he will have to be cleared for anesthesia.  I’ve asked God to please just let him get sick if we’re not meant to go through with this (the one time I’d ever wish for him to get sick!), but so far he’s healthy!  Prayers that this procedure goes smooth and easy and has no long-term negative effects for Ryder would be greatly appreciated!

Okay so pre-op on Friday, Botox next Tuesday, then the next Tuesday (the 20th) we’ll be doing another round of Constraint Induced Therapy with Ryder – yup he’s getting “sword fight” back on.  Ryder gave his cast the nickname Sword Fight last time for a reason, because he thought it was awesome that he had a sword attached.  Please pray for Maisy’s head.  I’m worried about all of the normal things with this casting: Ryder’s frustration level, stripping him of his independence, his comfort and ability to go on with his daily routine…but I have a whole other factor to take into account this time and that’s his little sisters role in all of this.  I don’t want her to become his punching bag (literally!) or the one he takes all of his frustrations out on.  Again, this is a situation where we’re doing it because we know it’s what is best for Ryder, so we deal with all of the not-so-fun stuff that comes along with it.  He’ll be getting an extra weekly therapy session during the time he has the cast on, so he’ll be seen 3 times a week.

Add a Birthday and all of the celebrating that comes along with that and March will be over before we know it.  Which isn’t necessarily a bad thing!  I hate being at this end of things, where scary procedures and uncertain outcomes are on the horizon.  Get me to the other end, where I can look back and be so thankful that things turned out great!  I have faith that they will…

So that’s where we’re at currently.  Ryder is amazing, we all know that, he’s been through rough things before and handled them like a champ, so I’m sure these things coming up will be no different.  Thanks for sticking by us, you know I’ll be posting updates as we go!