For some reason, I am having trouble coming up with the words to describe the neuro's visit and the feelings it stirred in me. I just get so emotionally drained after every one of these appointments. This time it is taking me a lot longer to "recover" from it than it has in the past, which is crazy because this was one of the better appointments we've had.
I've been doing a lot of thinking about one day when the boys were still in the NICU, back in the days before the hydro had been established. I guess the boys were somewhere around two weeks old. Sh.awn had just had a head ultrasound, and we had been given the news that his bleed had become a stage IV. Scary statistics and things like Cerebral Palsy and mental disability were discussed. The nurses were grave and quiet after we had talked with the neonatologist until one of them had come over to ask us if we had any questions. I told her that my gut told me that Sh.awn's bleed wasn't going to be something to worry over. (that would have been right had we not experienced the very dark days last year--so naive) She said that I should be worried, but she looked at him and said that he was looking good. Babies with CP were "twitchy" and Sh.awn was clearly not. She meant it as a comfort, but I didn't take it as such.
Instead, I turned my head slightly to the right and watched my second son twitch and jerk and be so very sick.
(it pains me to admit this. these thoughts make me feel so ashamed.) Her comment made me so afraid of Ja.son for the longest time. I was afraid to hold him, to touch him. I watched him struggle for so long, and I just knew. I knew that
if he survived, and there were times when I thought that was iffy, he'd be disabled. I was afraid of him. Most importantly, I was afraid of me. How would I be if he was disabled? Would I be able to love him and be the mother he deserves? I doubted myself so much.
(ugh, such ugly thoughts!)Then the boys came home, life went on, and I tucked those horrible feelings away. Now I don't often think about those thoughts unless I am in the mood to beat myself up and question my mothering ability.
Maybe I can't shake this memory because this boy I was so afraid of, my Ja.son, is doing so well?
Maybe it's because this boy, my Sh.awny, who my gut said was going to be okay, is the one who struggles?
I don't know, but it is there. That comment meant to reassure, which I am sure the nurse hasn't thought of again, haunts me.
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The neuro was very impressed with Ja.son. I fully expected to hear something negative about him because Ja.son does not walk unassisted yet. Had we not had doctors to "impress" or therapists to work with, it might not have bothered me. But we do, so it does. The neurologist said that he wasn't concerned, it wasn't CP, and that he would just be a late walker.
(makes sense as Is.aac was a late walker, too, although Is.aac had someone to carry him around whenever he wanted--my boys don't have that luxury) He was blown away when he heard that Ja.son uses 4-5 words in his sentences regularly. (such as "we go outside and play squirrels" which is 6 words, but he said exactly that this week)
Whew.
For Sh.awn, he did classify him as having cerebral palsy--mild hemiplegic, which I expected and had pretty much diagnosed myself. (I struggle with labels, though, and have a hard time saying that Sh.awn has CP. Denial?)
But, the neuro was VERY impressed with how Sh.awn is using his right side. The doctor believes Sh.awn will walk and learn to use his arm, although it will take time of course. He was impressed with the way Sh.awn was seeking stimulus and said a number of times that he sees this as mild. He loved that Sh.awn talked to him the ENTIRE time and used regular 2 word sentences. Plus there is no evidence of mental retardation in the slightest at this stage (which was a HUGE concern with all of the surgeries). I knew that already, but it is great to have it verbalized by a doctor.
The only concern is that with damage on the left side of Sh.awn's brain (shown through the limited use on his right side) there is an increased risk for seizures. The neuro did say that if it was going to be a big issue, we would most likely have seen evidence of it by now. We have not, which is a good thing. There is still a 30% chance, though, that Sh.awn could develop some sort of epilepsy as he grows.
BUT, let me just say that the universe better back off of that one or we are seriously going to have some trouble. No. Seriously.
The neuro was also VERY impressed with the gains Sh.awn has made in all areas. He commented several times on Sh.awn's motivation and desire to do for himself. That, as we all know, if the biggest reason for Sh.awn's improvement.
My boy will not be held back from what everyone else can do!
So, there it is. I don't think there could have been a better appointment short of the neuro waving a magic wand and eliminating the need for shunts and therapy.
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I just want to thank you all again for all of the support you have given us. It really does help, and I do read your comments at those weak moments I've been having. You all are wonderful; I am so glad I found you! (or you found me--well, however it happened, I am so glad you're here)
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I also apologize in advance for any grammatical errors, etc, you run across while reading this post. I can't bring myself to go back and proof it. I just......can't. I want to leave these thoughts here, if you know what I mean, and not take them with me when I walk away from the computer tonight.
Isn't it pretty? :-)
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