Before I tell you about the visit, I must admit how worried we have been about Asher in the past couple of months. As Nolan's skills have improved, Asher's have not. Nolan rolls and grabs and reaches and does all of these amazing things, that to be honest we have trouble enjoying because Asher is not doing them. With every tense arm and uncoordinated gesture, our worries about Cerebral Palsy (as a result of his bleeds) were becoming a lot more real. We analyze his every more and were starting to be so overcome with worry that we were not seeing many positives.
But lo and behold, enter IDP, and many of our worries have been put to rest. Yes, Asher is physically behind, that cannot be argued. But after careful observation he is still following along the expected path of development, just a little more slowly. As she has told us many times before, it is reassuring as long as he continues to follow that path, no matter how long it takes. Some of the highlights of both her observations and ours are as follows:
- He is starting to put his hands to mouth and to grab things/bat at toys at midline. This is a huge improvement from last time she saw him when he wasn't using his arms and hands for anything.
- He shows real concentration when trying to play with toys and it's as if you can see his brain telling his hand to put the toy in his mouth, yet he can't figure out how to bend his arm to do it. Jordan and I were worried about that intense concentration without any results, but she assured us that is a very good sign. What that shows us is that while he may not be able to physically carry out the actions, cognitively he is attempting to do them. Therefore, his lack of physical ability is not holding him back cognitively. She said the best solution to that is to continually help him with those activities (eg. bend his arm for him so he can get the toy in his mouth) so that he can teach his arm to do what his brain wants it to do.
- When lying under his mat or playing upright he generally has tight arms to begin with, but as he gets going with his activity his muscles loosen right up. Again, instead of worrying about the high tone at the start of the activity, we should be focussing on the fact that he eventually loosens up. She said that this is also a very good sign that he is able to eventually let go of the tenseness and that is a very normal reaction, even in adults, when we are concentrating to do something we are not well practiced at.
- He is incredibly socially aware and is constantly looking to us for feedback and affirmation. He is also "talking" a blue streak. Again she said this is incredibly positive that he is showing us he is socially and cognitively developing as expected.
- His sitting (while being supported) has vastly improved since last time she saw him. She said she noticed how much less effort he was expending to hold himself up and even if he did begin to slump forward out of tiredness, he had the ability to straighten himself up on his own.
I asked her when it becomes worrisome to her that his development is delayed and she said at this point she does not consider him significantly delayed. As long as he keeps following along the expected path and showing improvements, he proves that he is getting there, just more slowly (as is Asher's M.O.)
It's hard, very hard, not to wish his infancy away. We have no real enjoyment of the stages that both he and Nolan are going through because we are so desperate to see them sit...and then crawl...and then walk...and then talk. My heart will be very, very heavy until those milestones are passed because the worry is inevitable. Although as she pointed out, we have had three more months of infancy to deal with than most other parents so it is normal that we are beginning to tire of this waiting game and want to see them reach their next milestones in a hurry.
So there you have it. Huge sigh of relief. HUGE. Asher by no means has a clean bill of health by any stretch of the imagination. But as I think when every professional sees him "another visit has passed and no one is overly worried about him yet" and that feels GOOD. Now we just continue doing all the exercises our physio gave us and we try to help make his movements as easy for him as possible. We see both she and our PT again in two weeks, so here's hoping for more positive feedback then.
Our prayers have been answered a thousand fold already...I just pray they continue to be. Let's hope that in our case slow and steady really does win the race.