(you can silence the music by clicking on the little pause button on the right hand side of the blog)
I took a video this morning. You can see Colby having a couple seizures. They're just in his eyes and face. There's no rhyme or reason to when they happen. Though we do see that when he eats with a spoon, it happens every time he takes a bite. We're still in the process of getting transferred to Yale and we'll tell the neurosurgeon about that when we get there.
Tuesday took the wind out of our sails. But as the video shows, Colby is doing very well and we'll continue to work with him to help him continue to progress. Having PVL, a Brain Bleed or Hyrdrocephalus doesn't mean a child will have issues. Each one increases the likelyhood having something wrong. So the more things he has stacked against him, it's just the more we'll have to work to empower him to do all he can.
We had been going along the past couple months thinking we were in the clear and that all we had to do now was teach him, help him and empower him. So the thought of some new hurdles shocked us. But I thought back to when we first entered the hospital about a year ago and how our vision of having twins was suddenly rocked by our situation. But here we are just about a year later and all things considered, we're all doing very well. So the fact that Colby has some seizures and PVL is just something we'll deal with. Period. So let's move on.
Colby is a strong little boy. He's happy to be with us and we're so very happy to have him. That's what's most important.
3 comments:
Colby is the cutest little guy ever. I was just explaining to some family what life is like since Tyler and Hayden were born (feeling all sentimental, Tyler turned three last week). Some say, "wow, that whole situation really sucked." But to me, experiencing the loss of Hayden makes everything that currently exists in my life that much more awesome. I appreciate Tyler, in ways that I never thought possible. Also, this life has very few worries, I'm very aware that life could be worse. Tyler just qualified for the county 3-5 yr program...I thought for sure he wouldn't. Evidently, he tested behind in all five areas of assessement (!). A bit shocked, but oh well, just keep moving forward :) Your optimism is contagious, thanks.
I just want to say Following your story has brought joy into my life. Seeing every milestone that he hits I wait with great anticipation for my boys to hit those milestones too. You have a wonderful family and a magnificent little boy. God Bless.
He is doing great!!! Maleia has the same jumper, and her feet didn't touch the ground either when we first got it, but now she is on size 2 and jumps in it... she loves it!!!
It is great for his muscles!!!
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