I have been wanting to write about a few different topics lately, like our road to Oliver’s diagnosis or my discovery that there are, in fact, politicians who care about people. I will have to save those for a later date, though, since this time I really want to write about how amazingly well Oliver has been doing developmentally, especially in the past couple of months. I am dedicating this post as a thank-you to Oliver’s previous occupational therapist from Children’s Hospital, Alyssa.
Right before Oliver started his first seizure medication, vigabatrin, he was a total wreck. He was either doing 1 of 3 things- sleeping, eating, or crying. He did a lot of thrashing, screaming, and staring off into space, and instead of gaining new skills, he was actually losing the ones he had previously learned. We tried so many things- 2 kinds of reflux meds, gas medicine, swaddling, and constant holding, but nothing worked. We would hear things from other people- “Oh yeah, my baby cried and cried until we tried ___, then he/she was nothing but smiles and rainbows!” After a day or so into the new treatment, we would imagine that we saw improvements, and then we would shortly realize that it wasn’t our magic pill after all. After so many failures, needless to say, we couldn’t imagine something actually working. So we were skeptical about the vigabatrin. 2 ½ days after starting vigabatrin, while Oliver was at the babysitter’s, something happened. He started doing normal baby things, like cooing and rolling around, and stopped crying all the time. It was so exciting, but we were still skeptical. Seemed like this was the kind of thing that would work for a week or two, then stop. I probably still don’t actually realize how lucky we were that the vigabatrin, and subsequently the Topamax, have actually worked (fingers crossed). I know stories of people who did have the meds work for a few weeks before they stopped helping, and the seizures went back to how they had been before. Oliver is far from being out of the woods yet as far as seizures; they could come back any day worse than ever. His good response to the meds thus far has me hoping, though.
Oliver has been learning so much since October, when he started his meds. We started him in physical, occupational, and early childhood therapies almost immediately after his diagnosis, and we saw some strong and steady gains in everything except his fine motor abilities. His sitting was getting better and better, and it has finally progressed to sitting up on his own, to standing on his own, to walking. He is so driven to make gains in his gross motor skills, it’s unbelievable. I love joking/bragging that my baby with brain tumors learned how to walk sooner than either of his tumor-free parents! His social skills and language have really improved, too- lots of communication, babbling, and seeking out play with Mommy and Daddy. Fine motor was our big concern. By Christmastime, Oliver had gained back all his lost skills in every other area and was making further gains, but he was still worse at using his hands at 9 months of age than he had been at 3 months. He didn’t reach or use his hands for anything. He was really defensive; the moment you would try to take his hand to reach out to touch or grab something, he would jerk it back as hard as he could and cry if you insisted. OT wasn’t working at all; it was pretty clear that our current OT didn’t know much about teaching fine motor skills to babies. That’s when I talked to my OT friend from work, Alyssa, about my frustrations with his lack of development, and that’s when she told me all the things that OT should be doing with Oliver. Of course, our in-home OT wasn’t doing any of it. Alyssa was the reason I requested a new OT through Early Intervention and the reason we started going to Children’s for extra OT. We started going to Children’s to see Alyssa around mid-January, and within just a few sessions, Oliver was making huge gains. He would actually reach out to touch things sometimes, which was unbelievably exciting. We have a bunch of videos from that time, where if you didn’t know Ollie, you would have no idea what the big deal was. When Jadey and I watch those videos, we know that in the background, although you can’t hear it, we are both shouting and jumping for joy inside to watch him swing his little arm toward something or stick a toy in his mouth. He made almost daily progress since the moment he started seeing Alyssa, progress that couldn’t be attributed to his seizures being gone; he had made absolutely no progress in fine motor skills for his first 2 to 3 months of seizure freedom. Every time we would see her, she would joke that she had to keep rewriting his goals since he was making such great progress. Jadey was the first one to say that we needed to surround Oliver with the best people out there- not just someone who was good enough, but to seek out the best. That was Alyssa for sure.
I have to admit, I’m kind of obsessive about his development. Jadey is the same way. A few weeks ago, I was going through a language development checklist that I use at work, and one of the things that came up was that Oliver didn’t understand the word “no”. Which is probably because we NEVER tell him no! Any of his little mischievous-baby behaviors usually involve use of his hands, and we are cheering him on rather than trying to stop him. Oh, you want to grab the food off our plates and drop it on the ground, Oliver? Way to go! Make sure you get all these chips too, and not just the sandwich! You want to bang on the television screen? Nice job! Just make sure you don’t fall and hit your head on the corner of the TV stand! You want to grab your yogurt and smear it all over your face and shirt and drop it on the carpet? Great job! Try to get some in your mouth while you’re at it- or not- either way is fine! Yes, I suppose most parents would tell their kids “no” a lot more than Ollie hears it. Ollie and I were in the grocery store a month or so ago buying gift cards, and he reached out and grabbed a few stacks of cards right off their hook and dropped them on the floor. I was so excited to see it and was cheering him on! I even moved the cart a little closer so he could reach more cards. I’m sure everyone who saw us was wondering what was wrong with the crazy mom who just let her baby make a mess like that, but I wasn’t about to stop him! The grocery store folks have plenty of reason to think I’m crazy too, because as I walk through the store I am constantly talking to Oliver about what I am getting or looking for, or where we are going. I figure since I keep telling my families at work to do that with their language impaired kids, I had better do it with mine.
Oliver has progressed from not using his hands at all for anything, to playing with something that we put in his hands, to grabbing things, to swiping at things, to banging things with different parts of his hands. Right now, we are working on getting him to use a thumb and pointer finger pincer grasp, to hold his own bottle, to feed himself, to point at something, to clap, and to bang an object with another object. Mostly things that probably a 7 or 8-month-old baby can do easily, but they are really hard for him. Oliver has come so incredibly far in the past few months that I know he is going to learn to do them really soon. It’s all thanks to Alyssa. She gave me the information that brought about the change in therapists, sent emails to the people in charge of the wait list to get him in sooner, squeezed him into her packed schedule, and gave so many great ideas to use with him. Thank you so much for helping my son, Alyssa! Words cannot express how grateful I am for your support and care. You are an amazing person and therapist, and we already miss you tremendously! Children’s Hospital has no idea how much it lost when you left. I wish you the best.
