I feel like Rev Run

Anyone seen that MTV show? I used to love it! At the end if the episodes Rev Run sat in a hot bath and typed a sermon if that's what you call it, on his blackberry. So that's the reason for the title. I'm sitting in a bubble bath typing this post, sorry if that's TMI.

Since Maximus was born I have not attempted to look for groups or forums on his his condition. For two reasons:

1. The first time they told us they think he has Goltz syndrome we pretty much immediately turned to Google. Because that's what you do when you don't know about something right? You Google it. Well it was scary to say the least. I read all I could on Goltz Syndrome and honestly it scared me. It was a bad idea, it made me think the worst and that was not what I or my son needed. I did finally come to the conclusion that even if it was the worst, it didn't matter I love him and I'll do whatever it takes to make him comfortable and happy. Because that's my job and Heavenly Father trusts me with it and I don't wanna get fired.

2. I didn't want to see or hear the worst again. So I was afraid to find others with his syndrome for some reason it just scared me. Like I was going to find something out about Goltz that I couldn't handle.

Well people, I finally got curious or brave or whatever you call it and it turns out I had the complete opposite happen. Heavenly Father must have given me a raise because it was an answer to 10 months of prayers (everyone's, not just mine). I found a group on Facebook called Help find a cure for FDH (Focal Dermal Hypoplasia) aka Goltz Syndrome. It gave me so much hope, so many answers I began to cry of happiness. Their are almost 300 members who know of someone who has Goltz, has Goltz themselves or is a parent of a child who has Goltz. I have been able to talk to other moms and other older (females) who have Goltz (I feel like I'm using that word too much so sorry!). Most in the group are females. Only 3 I think are males. I am currently talking to a mom of a 16 yo boy who was diagnosed at birth. Maximus is pretty much following in his path. He has all the same abnormalities and everything! He plays baseball and has been like a normal kid most of his life. It feels so good to know this to have someone who's been through it and can give me answers. Also most of them have had feeding and eating issues. They are small but healthy so I now know Maximus doesn't and won't eat a lot and its ok. Anyways that's why it was an emotional day, but I got through it and I know it's not the last.

Today we took him in to his pediatrician and he weighs 13 lbs 10.5 oz! I'm hoping he will be 15 by his birthday. But that's a stretch and if he's not its ok! His throat looks good and his ears look awesome too. So we're on a good path! He's eating pretty good too. We give him finger foods that are small and he shovels like 3-4 in his mouth at the same time. And he doesn't gag or choke. It's awesome!

Anyways, next week on the 8th we go see Dr H. at Shriners for his foot. We will see what she has to say and when surgery might be. The hand Dr will be in December.

Well that's all I have time for right now. I need to get a post done about Hunting for 10 days. It was fun!

For now, I gotta go put my brave little boy to bed.

Night night.