Asher - 18 month follow up

Today, Asher went for his 18 month (corrected) neonatal follow up appointment at the hospital. Previously, the boys were tested at 4 and 8 months corrected, and will be again at 3 and 5 years. As I said yesterday, I was dreading this. But, like most things in life, when you spend a lot of time worrying about them, in the end they never usually turn out so badly.

The testing was adapted for Asher's physical limitations. So instead of getting tested on things he couldn't possibly do, tests were modified so that he was not prevented from showing what he is mentally, socially and emotionally capable of.



We have never had worries about Asher's cognitive development, and once again we got a nice confirmation of that. I obviously don't run Asher through "testing" at home, but it was pretty interesting to see what he is capable of outside of our normal activities. For instance, putting 9 blocks inside a cup was a test (yes, 9 specifically). With every block added, it gets more difficult because with less room, the aim needs to be better. Asher put 8 blocks in with a fair bit of ease, and even with the ninth, it was obvious where he wanted to put it, but was lacking that little bit of finesse to do so. That one was pretty exciting because the 9 blocks in a cup is actually an expected capability of a 22 month old and he was being tested as an 18 month old! There were several instances like that where even though he could maybe not master the skill perfectly, he somehow made it obvious that he knew what he was "supposed to do". Instead of feeling saddened by this testing, I felt so proud of him, and so positive about the fact that he keeps developing cognitively despite the fact that his body prevents him from much of what he wants to do.

The PT doing the testing was very pleased with her results. She said she was not sure Asher would be able to do enough to even register valid totals on the test, but he did! Not that those numbers mean anything to us, but they do help their research. And that research is a large part of why we go through this - if we can help other families prevent prematurity, or have healthier outcomes for babies who are born very prematurely, we want to help.

We got other really nice feedback too. First off, the neonatologist commented on how great Asher's mood regulation is. Often preemies, and especially those with CP (because their bodies frustrate them more) have big issues calming themselves down. Asher is cool as a cucumber, gets upset relatively unfrequently, and when he does, self soothes easily. I actually forgot that many times in the past (long before Asher's CP diagnosis), we had been told to prepare that preemies as young as ours are often "difficult" or "sensitive". Not a chance for our boys - they are pretty much the best behaved babies ever. Bullet dodged!

As for Asher's lungs, they sound "perfect". Another bullet dodged, and a remarkable one, given the history he had learning to breathe on his own. And OF COURSE they were thrilled with his size. How could they not be? And mama puffed her peacock feathers when they complimented me on that. I know that in reality, we (ok Jordan) make big kids, and that is 99% of the reason for their size. But I am happy to take the praise as well. In addition they were very happy with Asher's muscle mass. Given that he doesn't really use his right arm, and uses his legs than he would if he were crawling or walking, his muscles haven't atrophied at all. Phew.

In terms of other typical CP stuff, we had confirmation that in no way do his face or neck seem to be affected. So in other words, the drooling, head holding, eating/swallowing, tracking/focussing problems that many kids with CP have, are not an issue. I know I am getting ahead of myself, but this gives me GREAT hope that it means his speech will not be affected, or at least not significantly. We'll see.

My favourite part of the day was when Asher was handed a baby doll. He picked it up and cradled it to his shoulder, patted it on the back, and talked to it in a different, softer voice than he normally does. It was pretty much the sweetest thing I have ever seen. Rio, say goodbye to your babies, Papa Asher is in the house!

Next Friday Nolan is up for the same experience. I'm now actually excited. Nolan does not have any physical limitations preventing him from doing any of the testing, so I am anxious to see where he lies on the spectrum of capabilities for a baby that has had his history.

Obviously, whatever the findings, these kids are champs. Not that there was ever any doubt.