Last week we were really lucky to have not one, but two meetings with the doctors at Shriner’s. For those who don’t know Shriner’s hospitals specialize in orthopedic and burn care for children. Their facilities and doctors have amazing reputations and they are known for not turning away any patients due to financial issues. They used to bill insurance for their services and then pay off the rest with the money from the Shriner’s, but since the downturn of the economy they’ve been running shorter on funds and are encouraging those who can pay to pay. So when you see the guys with the funny hats and cans walking in the street this summer, see if you can’t help them out for Aleck 😉
On Tuesday we met with the head of Orthopedics who looked at Aleck’s braces, his tendon cutting, and all of his movement. Luckily ACP was in a great mood and seemed to love the big mirror they have next to the beds in the exam rooms. The doctor wondered why our doctors wanted to keep him in the braces 23 hrs a day until 6 months after the surgery when the normal is to keep him in braces for 2-3 months all day and then switch to just at night. I didn’t have an answer for him and at that moment I didn’t care to have one since my first reaction was to automatically go with the longer wear, error on the side of caution. But while we were working with the OT there and she kept talking about how the best motion is what he does on his own, and how she wants him to wear his stretchy splints when he sleeps so we aren’t doing things while he’s awake to interfere with that natural range of motion…hello lightbulb. If he’s in the braces during the day for an additional 3 months how is that going to affect his movement? Shouldn’t we be encouraging his natural movement as much as possible? Many babies begin to crawl between 6 and 9 months, if he’s still in braces at 8 months will it be that much harder to encourage natural movement? Will his legs be that much more underdeveloped than they already are?
I’m trying to have a follow up with that doctor and I’m meeting with my RIC doctor next week and will bring all of these issues up as well. You can still see the affect on his legs from the casting and splinting, when I lay him in the bath that leg of self-expression still sticks up and out like it did in the splint. Yes we do Physical Therapy everyday and I’ve even been increasing the amount of time he gets out of the braces to encourage him to kick his legs, plant his feet, find his toes, but I can tell that it’s still not enough to get him really moving. For example, he rolls over in his crib while he’s sleeping. He flips onto his tummy and then when he wakes up he flips onto his back, but I have trouble getting him to do that without the braces on during the day. Obviously we need to get this resolved quickly since it’s now 2 months since the tendon cutting, and if we took the braces off during the day at the 3 month mark that would mean they could be off at the end of April, beginning of May, which would be amazing since this is one little boy who’s dying to move.
My favorite thing about the Shriner’s visits was meeting with their OT. She’s really aggressive with her recommendations for treatment and got me very motivated to kick everything up a notch. During our first visit she put Aleck in tummy time using his arms and without any support on his chest. He took it like a champ though I had to sing “Wheels on the Bus” to keep him happy through it. But what was so amazing was that you can see where his elbows are and his arms stayed looking stretched out for a little bit afterwards. We are now doing tummy time like this at least twice a day, and many more renditions of “Wheels” along with “Obla di Obla da” to keep Aleck smiling throughout. This OT also took us to the casting room where she made Aleck “Elbow Splints”. In between fittings I fed him and when he got cranky while they were molding we found it comforted him to suck on my nose, it was super cute. It was suggested that we wear these splints for feeding and play to encourage him to get the bottle. So now we put these splints on him right before 3 out of the four feeds he gets during the day and he’s totally cool with it. I swear, I don’t know anyone who can take every type of new splint, holster and brace the way my little man can. No complaining, no fussing, he watches me strap it on and I think he’s even trying to bend his elbow for me when I put them on.
So now he gets his elbow splints on before every feed, his stretchy hand splints he wears during his naps and eventually he’ll wear them to sleep at night but one step at a time, and he wears his shoulder splints and active splints during play time along with his braces which he wears to sleep and for most of the day. Did you get all of that? Were you taking notes? I now spend about a quarter of my day strapping Aleck in and out of various contraptions. It’s kind of insane. And thank god he’s such a good baby because if he screamed, and he easily could, every time I had to put him in one of these it would double the amount of time out of my day (and the amount of Advil, and probably the amount of alcohol I need to drink).
On Friday we went back to Shriner’s to meet with an orthopedic surgeon, a hand and upper extremity specialist who spoke with us about some of the cons of having surgery on his elbows to give him “active” flexion. There was a lot of talk about “passive” and “active” movement and how sometimes when they do that surgery to give the child that movement their arm can stick in that position, so Aleck could end up walking around with an arm that’s always bent instead of arms that are always straight. I liked the doctor a lot, he’s got an amazing reputation and we’ll meet with him again over the summer. What was really crucial for me about Friday was that my OT from Early Intervention came with me and she met our OT at Shriner’s so they could get on the same page and work more as a team. The woman at Shriner’s was already impressed that our OT does splints since very few OT’s at EI make splints, the main device that will help Aleck gain as much mobility as possible. I was thrilled that my OT was so willing to check her ego at the door (she’s so sweet, I don’t think it was difficult for her at all) and work with this other woman so we can have the best team for Aleck. It’s so hard for me to relay messages and instructions from one professional to another, so giving them a direct line will not only make my life easier, it’ll help to insure we are working Aleck correctly and to his fullest potential.
Today was the third day Aleck has napped in his stretchy splints. He’s amazing. Took his full morning nap without complaining once. I actually had to wake him up so he could get his weigh in with the nutritionist. The afternoon naps aren’t quite as successful, I keep going back in and stroking his back while offering him a pacifier, and when I went in towards the end of his nap he had rolled himself onto his tummy and looked like he was sleeping pretty comfortably even with these hard plastic velcro covered devices on his hands. I know I couldn’t do it. Once he’s mastered both naps with them on we’ll move to night time wearing, but not yet. Craig and I just aren’t ready for the sleepless nights ahead on that one and want to make the transition as easy as possible, for all three of us. Whew.
On March 26th we go in for the swallow study to see just how bad this cleft is and figure out what we need to do for it and if we can move into solid foods yet. Lately his burping has gotten worse, harder to burp, complaining even more during the feeding, and he’s started to really express himself during these moments. He makes long vowel noises like “Aaaaooeeeaaaaah” as if he’s trying to coax the burp out of him. It’s pretty funny to hear and it sounds like he’s trying to talk. Who knows, maybe he’s a prodigy. Craig was saying how excited he is to hear what Aleck’s voice sounds like and I couldn’t help but think that once he starts talking, he’ll never stop, if he’s anything like his parents ;).
I’ve posted some videos of Aleck with his girl Eliana, and of going into tummy time but with support with his OT and his PT.
http://www.youtube.com/user/LynnReneePhotography?feature=mhee
Enjoy!!!