I decided to start this blog to keep those who know us updated on the going-ons in our life, and to share with those who don't know us, but have similar situations like that of our son, a little about us.
I am a married mother of a 4 1/2 year old version of myself, Maile.
We also just had a baby boy, Kale, on September 22, 2008.
Kale's eyes did not fully develop in the womb and he was born with a condition called Bilateral Microphthalmia (meaning "small eye"). We were told his is a severe case, which is based on the size of his eyes. As of now, he is blind. I say "as of now" because we just don't really know. We believe he has some light perception but we probably won't really know the extent of his visual impairment until he is older. His eyes are still shut, but they seem to be opening up a little more as time goes by.
There are some issues with his hearing, but we've been going back and forth with this for the past eight weeks and still won't know anything until January 5th, when he goes for some more testing which will hopefully give us some answers. We're seeing Dr. Chicola with Nemours and are impressed with him already just after one meeting.
Until then, we are just loving him and all the smiles he brings to our little family. Maile just adores her baby brother and we are just in heaven with them both. Check out how "healthy" our butterball is! He's 10 weeks old and as of last week, he weighed 11 lbs., 10 oz. and is 23 inches long! Doc says he's perfect though, which is no news to us.
The past ten weeks have been jam packed with specialists and doctors visits all over town. Cardiologists, audiologists, pediatrician, ENT...it's kind of nice to have a week where we don't have to go anywhere!!! We don't have to go for another two weeks actually, and that's just for Kale's 3 month check-up. He also has to have the Synagis vaccine (to prevent RSV) every 28 days, November through April until he's two. Fun, fun. Here's hoping he becomes immune to the whole fear of getting shots as he gets older.
Yesterday a few ladies from Early Steps Intervention program came over to do an evaluation on Kale and ask us a bunch of questions regarding his development. They rang a bell around his head to see if he would move towards the sound...he was kinda iffy on that. They also shined a little light back and forth in front of his closed eyes to see if he'd "follow" it. He did! Somewhat. But they totally noticed it and while I know there are some parents of children with Microphthalmia that say light perception is no big deal (I read this on a message board recently), it's still something to us. Maybe in a few years it won't matter but right now it does.
The physical therapist and the ITDS (infant toddler development specialist) both said that Kale's on track development wise and they were amazed at his neck and head control. The PT also mentioned that people who are blind usually do not lift their heads up since there is no real motivation to do so. But Kale is always lifting his head up and "looks" around. His little eyes seem to be searching for something, even though they're closed. It's kind of hard to explain, you'd just have to see it for yourself. I'm glad the ladies noticed. They said that he's got to be able to "see" something, even if just light and shadows. But who knows.
The next couple of months are just gonna be the ignorant bliss kind of months as Kale isn't scheduled to see a PO (pediatric ophthalmologist) until March. We're taking him to UAB to see Dr. Cogen who treats Kale's condition a few times a year. We were originally scheduled to see the only PO here in our area, but have decided to go elsewhere for our own personal reasons.
Oh! I almost forgot! I got Kale to laugh today! I was doing what I could to make him smile and he laughed twice!!! I had to call Mike at work and tell him. I know it doesn't seem like much, but when your baby can't see you it gets frustrating not being able to communicate through sight. So the smiles he's been giving us the past week have been like little pieces of heaven and then today when I got a laugh? I almost cried, I was so happy.
Anyway, there are going to be rough patches, I know this. But I believe that the good times and good things are going to outweigh them significantly.