Well, no posts for a while on here, but for a good reason: life has been pretty uneventful, health-wise. Christopher is growing like crazy and is deliciously pudgy right now. He was just a hair under 17 pounds at his 4-month appointment.
He's also meeting his developmental milestones so far - reaching for toys, trying to roll, doing lots of cooing and vocalizing, and TONS of smiling. He's a pretty easy baby. He sleeps fairly well at night (with the odd exception), but doesn't nap much at all. And he pretty much thinks someone should hold him all the time, although he will allow us to set him down for a FEW minutes at a time!
We have noticed in the past couple of weeks that there is starting to be a difference between the movement in his two arms. While he reaches for toys with both arms, he doesn't connect as frequently with the left, which is the side that was affected by the stroke. He also tends to hold that shoulder back when the arm is relaxed. And as he is learning to roll, we've noticed that he only rolls toward his right side so far.
All of these things are minor, and not obvious to a casual observer. I noticed them first, because I spend the most time with him, but they are becoming more prominent with time. We were warned by the neurologist that this might happen. Damage from a stroke can be come more obvious as the baby learns more complex skills and one part lags behind. When both arms were still making random motions as newborns do, the difference was hard to detect - now it's more obvious.
We had a follow-up appointment with the physiotherapist at CHEO today and she was very encouraging. She does see what we see, and she immediately taught me some ways to help him to use the left arm, everything from introducing toys from his left, to leaving his right arm inside the body of his shirt for a few minutes so he's forced to use his left. We also talked a lot about exactly where the deficit is. He seems to be able to do fairly fine movement with the hand, and the therapist is wondering if the issue is more with trunk and shoulder girdle control on the left. This could be from the stroke, or possibly from where they made the incision for his first surgery, just under his left shoulder blade.
The other possibility is that the issue is actually related to vision. We were told when he had the stroke that it might be affecting a visual area. If he is missing part of his visual field on the left, his issues with purposeful movement with that hand might actually be because he can't SEE the hand - or can't see it as well as his right.
It's all a bit scary to contemplate. The focus with respect to his health has shifted from the heart (which remains good, as far as well know) to the sequelae of the stroke, which we may not fully understand for years. The really good news is that we are in a great city where help is available. He has made it to the top of the wait list for the Children's Treatment Centre, so we'll be going there for physio from now on. They have a more interdisciplinary approach to care, so if he needs occupational or speech therapy, psychologists' services, or social work, those will all be available to him. We love his therapist at CHEO, and it's hard to leave her, but we know that more help is available at the Children's Treatment Centre.
We're also looking into getting his vision tested. Reportedly the wait list for ophthalmology at CHEO is two years (!), but I will confirm that when we see his neurologist. In the meantime, I have contacted an optometry clinic in Ottawa which sees babies, to see whether he is old enough to be assessed. We will get him the testing he needs, however we have to make it happen.
We should also be having a follow-up with his neurologist soon. There was a bit of a mix-up with getting the appointment booked, so we're in the process of getting that sorted out. I stopped into the neurology department today on our way out of CHEO and was greeted by a very familiar face at the desk - but one that I absolutely couldn't place. It turned out it was one of his amazing PICU nurses, Julia, who has moved to a new role at the neurology clinic. I just didn't recognize her in dress clothes instead of scrubs! Julia was there the day of his second surgery, when his heart nearly stopped, and she was very involved in the amazing care he received. I feel like her name is forever in my heart, and I felt terrible for not recognizing her at first - but she was very understanding. She was thrilled to see us and see how well Christopher is doing. She told me, "I will never forget this little guy. Ever." Pretty touching.
So, lots going on. Christopher's next cardiology appointment is next Tuesday, and he'll have another echo then to recheck the aorta.
And I'm happy to report that we are celebrating his baptism this weekend. He was already baptised in hospital on the day that he was first admitted, but I can't say it was a particularly joyous occasion. Our church community offered to give him a special blessing as a way to formally welcome him into the community, and we happily accepted. It took a while to find a baptismal gown large enough for our little bruiser, but a friend has offered one that is a family heirloom, so we're all set and looking forward to a great day. Christopher's uncle is getting married this weekend, so a lot of his family members on that side will be here for the wedding and are able to join in the baptismal celebration as well. It should be quite a weekend!
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