Tuesday, October 4, 2011


I never thought I would so excited to say my son is getting botox! We met with a doctor that specializes in rehabilitation. He was great and really thought that Botox might be perfect for Nick. Since Nick is unable to open his hands all the way and is still in 'baby mode' and wants to clench his fists all the time, the doctor thinks that it will help relax the particular group of muscles that Nick has tightening in. It is not a permanent solution, and if it does work it was to be redone every 4-6 months. It's really a quick and simple procedure but sometimes they have to put the kiddos under general sedation. Hopefully, Nick will cooperate and not need that though!
I am just so ecstatic that he will (hopefully) have functional use of his hands! Since he has such significant vision loss using his hands is key and if he can't do that then things are much harder in so many ways. He really needs to be able to feel his environment and discover new textures and grab things as he wants and not put so much focus into just opening his hand.

His first procedure is November 4 and we will really be counting down the days!

He is also scheduled to see the dentist for the first time on Thursday. I really don't know what they will say about his teeth. They are so unusual. The past couple of weeks he has been cutting teeth like crazy! I think he has about 13 teeth right now, including one that popped through his cleft...this one I am pretty worried about. I really hope it doesn't cause issues with his cleft or give him any more pain. I really have been trying to get a picture of them but getting him to open his mouth is NOT easy!

He also has appointments this month for genetics and opthamology. We are seeing a new opthamologist and are really hoping she can give us some actual insight about Nick's vision and about things we can do. Our last one was 'on the way out' and I don't think she was really trying too hard anymore, unfortunately.

Oh, and we found out it's more than likely another BOY! It was kind of early for the ultrasound and the technician was pretty sure she saw boy parts. It would have been nice to have another girl but thankfully, we won't have to buy any baby stuff! And so far the baby looks healthy, they weren't able to get a good look at the spine but told us that is probably just because of the gestational age. We are still praying this baby is totally healthy and that we can figure out our finances quickly as we (meaning I) still do not have insurance and it's looking pretty grim in that area.

Here is the best video ever! Nick is laughing as his Aunt Anna kisses his hand and makes funny noises! It's very rare to hear him laugh so I am so thankful to have caught it on video!


  1. I love the video!!! What a cute laugh! I never told you congrats and good luck about the new baby! I couldn't even imagine... you must be one special lady!! Laynie's doctor has been talking about botox too, but in her salivary glands to reduce secretions! Good luck with everything!
    Love, Calyn and Laynie:)

  2. My gosh he's just adorable! His laugh is contagious. My Pierce was laughing along with the video.
    Good to hear about the baby looking healthy! Keeping my fingers crossed about the insurance for you.

  3. Even if it's not a permanent solution, is the best you can get for your kid.
    I'm so glad when I hear stories like yours because people think botox is just an anti-aging treatment but that's not true....

    A few months ago I heard about a little kid that was saved by a botox treatment in Toronto.....and I'm sure your case and the one I've heard about are not singular...