Baby Steps

Monday, February 20, 2012

The new medicine

Piper started vigabatrin on Wednesday. It has decreased the number and severity of her spasms which is awesome. She did have more yesterday but we hope as the dosage increases they will continue to decrease. We don't expect for the spasms to go away completely but a decrease is great. We pray it continues to work.

The medicine makes her extremely sleepy, she slept almost 19 hours the first day. It worried me a little because I have never seen anything sleep like that. The only way I could get her to wake up and eat was to rub an ice cube on her belly or put her in a cold bath. (mean old mommy)The doctor decreased her dose and we are going to gradually work our way up so her body can get used to it slowly. It was great to see her catch up on all the sleep she has missed in the past three months. Justin said, "imagine how you would feel if you didn't sleep well for three months." He quickly withdrew that statement after the look on my face. Of course my retort was "try six months." hahaha! We are actually able to put her down for a nap, this is so foreign to us we just sit there and watch her because we aren't used to putting her down at all! It makes me so happy to watch her sleeping peacefully and uninterrupted.

Her muscle tone seems to be increasing and she is getting stronger. She has become extremely squirmy and is constantly kicking and what I call "windmilling" her arms around. We have both received several blows to the face with these little arms. She moves her head around constantly but is still very wobbly. She is pretty irritable and angry right now but we take advantage of that and put her on her belly. She will try her best to lift her head and scream at us! She seems to be stronger every day.

We haven't seen any smiles or laughs yet. I was hoping I could get a picture of her smiling for her 6 month picture yesterday but she is just not ready yet. I'll keep waiting. She is still not making a lot of eye contact or responding to us. She will listen to our voices if we catch her in the right mood. We are still not sure how well she can see. We do know that her ERG was normal for her age but it really just tests light detection. We have also done a lot of research on vigabatrin and how to protect her eyes. They research we found says to keep her in dim light most of the time and away from bright lights. Since it will be warm soon and we love being outdoors I bought her some Julbo infant protective sunglasses. She may be wearing these all the time.

As far as everything else goes, there may be some other changes in the near future. Justin's job may include new opportunities and responsibilities which may lead us out of Chattanooga.
We have started doing home improvement projects around the house to get it ready to put on the market.It has made me feel like myself for the first time in months. Those of you that know me well, nothing makes me happier than a house project. I'm the weirdo that is elated over a can of paint, a room to organize and something to fix. Now that Piper is taking naps I can actually get things done. I even watched Hoarders for a couple hours the other day for inspiration. Nothing motivates me more than the thought of living like that!


  1. WOW I am so happy for you and Piper. How wonderful. Her hair is so beautiful. She looks so perfect and adorable. You are the best parents in the world. Where will you move? i love you love Ellen

  2. thrilled to hear this great news. Praying the progress continues and her eyes are shielded and protected by the strength of God's hand.

  3. We have never met but my son Andrew runs with Justin. Your family has been in my prayers since before Piper was born. So glad she--and you--have been able to rest some.She is a beautiful baby.

  4. Thank you for the prayers! Ellen, I told Aunt Sue more details about the move