April 28, 2011

big night.

Tonight is a BIG night...I am nervous and so excited. You see, tonight we are starting to s l o w l y wean Pin off of one of her anti-seizure meds. As always, our goal for our daughter is for her to be seizure-free, med free. We feel SO grateful that her seizures have been under control and we now want her on as little meds as possible while remaining seizure-free. After much research, it is my belief that the phenobarbital she is on is the major cause of her being developmentally delayed. It is a very strong barbiturate that slows everything down. Everything. She has been on this med since day 7.

Our prayer requests:
1. Please pray that as we wean her, seizure activity WILL NOT return.
2. Pray that we will see Pin's true personality emerge coupled with a major increase in development and emotion.
3. Pray she will sit up on her own, roll from her back to tummy and reach her arms out to grab.

Thank you so much for walking THIS far with us and for always asking how to pray.
Much love and gratitude-
*we are weaning Pin under the supervision of her neurologists. they are fully aware.

April 25, 2011

pin turns ONE.

*the better photos are taken by our dear friend, kim lindstrom.

April 9, 2011


Pin gets her helmet THIS Wednesday. According to the people at Cranial Technologies, she may need two. One complete round and then another. We have decided to embrace the flatness while it is still with us. I mean, her head is like a square. She still does not roll from her back to her tummy but, How can you roll a square?

Poor baby. I feel like it is my (our) fault and for that I feel bad. I was timid to put her on her tummy and didn't know ways to change that. Frankly, we were in survival-mode. I did try different positioning and tried to get her excited about time on her tummy, but she would roll over to her back. Again and again.

Well, it is what it is.

Here is her mug shot: 

After they determined she did (in fact!) need a helmet, she had a 3D scan of her head. They covered her entire head with a mesh cap to make sure the shaping is correct. She is such a trooper. I wanted to cry for her but held back the tears.

3D Pin: