Well. Where to begin?
Ja.son - is doing well. In fact, Ja.son is doing so well, the neurologist feels it will soon be difficult to justify Early Start intervention for him. Not too bad for a baby at
high risk for CP. The doctor was quite impressed with Ja.son as a whole, but most specifically, he said that Ja.son's dexterity was remarkable - especially in light of his first observations. He also noted that Ja.son's social and verbal interaction makes him believe that there very well may be little remnants of all of this stuff for the long term (he prefaced it with "although no one has a crystal ball", but still)
Can we all say hallelujah?!!?
Concerns for Ja.son - his eyes. Over the last several weeks, Ja.son has started to cross his eyes somewhat. We have an appointment with the ophthalmologist on Tuesday, so we shall see if the neurologist's prediction of glasses will come to fruition. (probably)
Sh.awn - is doing well...except we now have a preliminary diagnosis of
monoplegia in his right arm, most likely from all of the surgeries he had during those very dark days. The good news is that the doctor feels that this is a very mild case, but still. This wasn't exactly what anyone would want to hear about her child.
Prognosis is very good. The doctor was very encouraging about the restraint therapy helping Sh.awn improve the use of his right arm. He suggests we continue to use this therapy several times a day and hopefully we'll see further improvement. I had already decided that I would continue to use the therapy with or without endorsement from the doctor because I have seen improvement in just the short amount of time I've been doing it. It was nice, though, to have someone else confirm that I am helping him by doing this.
Sh.awn was a chatterbox and his usual flirty self during the appointment today. Thankfully, children with mental retardation would not be as animated as he was (based on his thirty years experience) so he ruled out that for Sh.awn.
Can we all say hallelujah for that?!!?
I didn't really feel like that was something that Sh.awn would face, but the confirmation that he should be mentally okay was wonderful to hear.
So there it is.
Is.aac and I talked somewhat about what we were told today (we'll talk more over the days to come). We both agree that we are beyond thrilled about Ja.son. For Sh.awn, while we are not happy about the diagnosis, we both feel in our hearts that this will be something he (and we) will overcome, if not completely, then at least to the point in which is doesn't interfere too much with his overall quality of life. I do believe that, although my fear gets the best of me and I worry about it anyway.
-----
I was able to exhale the slightest little bit today after this appointment. We are not out of the woods, but I can see the clearing in the not too far off distance. I felt okay, like maybe things will be okay...
and then I was filled with a blinding rage. The anger about all of the stuff Sh.awn went through during those very dark days came flooding back.
What if they had corrected the shunt failure the first time? How much damage did they do by continuing to go back inside his brain over and over? How would it have been different if I had chosen a different hospital and different doctors? What if they would have been a better choice? The list of questions goes on and on.
While it is pointless to wonder how different things would be for Sh.awn if he hadn't had those eight surgeries in eight weeks, I just can't help myself.
-----
Tonight, bath time was just a little bit sweeter than it was yesterday. Feeling the boys snuggle up against me while we read our bedtime story was just a little more special. Kissing their sweet heads as I tucked them in bed filled my heart with love.
I was able to exhale the slightest little bit while I said goodnight.
I think we're going to be okay.
Posts
