Mommy and Daddy decided to start Alexandra's P.H.A.T.E.

Mommy and Daddy decided today to create a 501(c) 3 organization to assist families who are affected by Torticollis, Plagiocephaly and Cranial Remolding Orthoses (helmets). Daddy came up with a great name. It will be called Alexandra’s P.H.A.T.E. The PHATE part stands for Plagiocephaly, Helmets And Torticollis Education. He is so smart. He is even going to start a website and try to get Orthomerica to pitch in and donate CROs to families that cannot otherwise afford them. Here I am only 8 months old and I already have a foundation named after me. How amazing!

PT again today and helmet doesn't even phase me anymore!

I am still having physical therapy weekly and am making progress every time. I am able to sit much longer by myself now. My range of motion to the left has increased to about 75%, which is a far cry from where I started. I am beginning to get on my hands and knees and think about crawling, but I am not quite there yet. Life is tough for Mommy and Daddy right now. When we go out in public we get a lot of stares. Of course, I don’t notice because all I do is smile and have a good old time. However, they recognize that people stare a lot at us. People just don’t seem to understand that I am just a baby girl. Look past my helmet and see me for what I am. Please do not turn away or avoid me because of it. Mommy wonders if she did the right thing by choosing to make me wear my CRO. Hopefully this will all be worth it in the long run. It is much harder on her than it is on me.

First follow up visit with Orthotist today about CRO!

Today was our first follow-up / adjustment visit at the Orthotist’s office. The CRO is really leaving a red mark on my right forehead, so the orthotist shaved some of the foam out to try and help. They are always very nice and good to me. We were in and out pretty quick. I adjusted pretty well to the CRO. Mommy and Daddy followed the schedule and I am now wearing it 23 hours per day. I sleep fine and seem to not even realize it is there. I think it affects my parents more than me. Everywhere we go now people are staring at me, wondering “Oh my, I wonder what is wrong with that beautiful baby?” I’m just fine folks. Please try to see past the helmet and don’t prejudge me because of it. After our appointment, we went to Target to get letters to spell my name on my CRO. Maybe that way, people would realize, I’m just a baby girl named Alexandra. Not a baby girl that wears a helmet that they have to avoid!

Here are some more pictures from my first day.

These pictures are of me to show my Plagiocephaly a bit better to the naked eye. Please notice in the left picture that my cheek and forehead on the affected side are "bossed" or sticking out a bit. Also notice, the right-rear of my head is significantly flatter. Hence, My Plagio! It is going to be tough to wear that helmet 23 hours a day. Last night was tough enough. Hopefully I will get used to it pretty quick!