Ever since Aleck was first born and first diagnosed I’ve day dreamed about what 18 months would look like in our house. Would he be crawlling? Would he be walking? Would he be talking? What would his personality look like? Would he be like so many other 18 month old children I’ve met, running around like little wildabeasts saying “no” to absoutely everything that comes their way?
When we first started meeting with all of these therapists they stressed how important it is to get as much flexibility and range of motion in Aleck’s limbs before he reaches 24 months. They alluded to a change in his body’s developement once he hits 24 months, elbows locking up, joints solidifying in place, a virtual deadline for getting the most out of Aleck’s potential mobility. We knew that these first two years would probably be the hardest part of Aleck’s childhood mainly because there is so much at stake here and the clock is ticking.
So we’re going full tilt boogie (as my parents used to say) trying to make as many improvements in Aleck’s condition as we can before this window of opportunity starts to close down on us. I’ve set up an email network with all of his therapists so they can talk and discuss what we are working on, what needs to come next, and what our priorities in therapy should be right now. On Friday Aleck got his AFO’s and on Monday he did three laps of the therapy floor in the walker with his new orthotics and his new Justice League sneakers flashing with every step. An order has been placed requesting a walker for home so that we can continue therapy at home as much as possible. A second order was placed for new splints for Aleck’s hands that he will be sleeping with at night. This is going to be a big adjustment as he’s only worn his splints for naps so I’m guessing we’ve got some sleepless nights ahead as he gets adjusted to the new splinting. The middle finger on his right hand is still very stiff, almost webbed like, and is really getting in the way of the rest of his fingers on his right hand. So it’s time to focus on getting these fingers as stretched out as possible. He might even wear some splinting during the day if he’s not making enough progress with them just at night, but mainly on his right hand. This could be a very good strategy for his left hand as it’s way underutilized yet has more flexibility then his right hand. We might end up splinting the right during the day just to activate that left hand more often so that both hands are better developed by the time he hits 24 months. We’re also experimenting with kineseology tape to activate the rest of the fingers on his right hand. He’s not crazy about the taping, and it only last a few days, but it’s time to try every trick in the book right now whether he likes it or not.
We are also working on new ideas to increase elbow flexion, one of our primary concerns since day one. Right now we are talking about botox, talking about e-stem, talking about putting in a stronger elastic in his batsuit so we can really get as much bend in those little bows as possible. On the table are also ways to assist his deltoids in getting those hands up closer to his mouth so he can feed himself. Maybe something that attaches to his high chair and to his Batsuit to facilitate with self feeding. What’s great is that there are lots of ideas being thrown around right now and since we are still at the RIC we still have access to all the equipment, technology, orthotists, and resources that we need to kick his therapy into high gear. There’s a lot to do but it’s all really exciting and motivating, plus Aleck is the most motivated of all which makes our job so much easier.
But this would all be a lot easier if we could keep this little man healthy! He’s been sick basically non-stop since he had his tonsils and adenoids out. On the bright side it’s such a change of pace to be able to talk to my other mom friends about how sick our little ones get, it’s such a regular problem to have and I feel like every other mom complaining about all the pediatrician visits. On the dark side, when he gets sick we have to feed him his bottles and liquids by spoon in order to keep him fed and hydrated. In February he had the stomach flu. In March he had two different viruses, and last week he caught hand foot mouth. With every sickness it’s two weeks from the time it starts until he starts to eat well again. And by the time he starts eating well again he’s picked up yet another virus. It’s been an incredibly viscious cycle, trying to keep him eating and drinking, giving him time to recover and recooperate, but also trying to keep up with our crazy therapy schedule. We’ve had to cancel one day of therapies every single week since the end of February. And everytime Aleck stops eating and drinking I start to panic again. He’s barely 18 pounds (17 lbs, 14.5 oz), so that’s 1 pound for every month he’s been alive. Now, I’m no math expert, but that doesn’t add up well for any of us. But what can we do. We don’t want a feeding tube, he hasn’t been healthy enough to even discuss it, and he’s not in any type of danger, but he is burning a lot of calories with his grueling schedule. And with every virus comes a frantic call to the GI, my child won’t eat or drink, does he need new medicine? Do we need an endoscopy? Is something else going on? Is he teething?
With a total of 6 teeth in that cute little mouth it’s always possible he’s teething. After all, we’ve a long way to go to fill those gums with chompers, and with each round we get hit with low grade fevers, waking up multiple times during the night, and refusal to take his bottle. We wish we could switch out the bottle for a sippy cup or open cup, but he’s still not taking enough liquid through those to eliminate the bottle. When he’s feeling well it’s the best way to get a dose of nutrition and liquid into his little belly. Unfortunately feeding hasn’t gotten much better because of all the illness, and with each virus we face a new round of cleaning up vomit in his crib, in the high chair, and all over his stroller during a recent trip to Barnes and Noble(you should have seen the looks we got as Aleck unloaded all over himself, of course we hardly batted an eyelash). Part of me wants to lock him in a bubble, but most of me wants to have as much fun with him as possible. See as many friends as we can, set up as many playdates as we can, inject as much normalcy into our lives as possible since we missed so much over the last 16 months. And after each fun filled weekend we seem to great a new round of sick in the house. It definitely sucks but it’s such a regular problem to have, such a nice change of pace, it almost puts a smile on my face.