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Tuesday, December 4, 2012

Whats Normal?

In the past 2 1/2 years, I found myself wondering what a "normal" pregnancy would be like. To show up to my baby shower with a big belly, a baby inside. Not having my shower after baby was here for 2 months, because we didnt know if she would survive. I wondered what it would be like to have the "normal" doctor appointments to a pediatrician at 2 weeks, 2 months, 4 months and so on. Instead we have a team of 10 different doctors and therapists and specialists looking after one child. I wondered what it would be like to wear maternity clothes. To take a baby HOME with YOU from the hospital. I got that chance 2 months ago. It was perfect! She is healthy! She is 11lbs 11oz (57%). She came home with us. She has has no problems! Then out of the blue, Josh questioned her always looking to the left. I hadnt seen it. Perhaps Im too caught up in the everyday tasks I have. But I told him he was crazy. I also feel I did not want to pick her apart as we have had to do to Brielle. I just wanted her to be "Normal". Josh questioned Brielles physical therapist, Lisa, at Brielles therapy christmas party on Saturday. Lisa said she would evaluate Tayvah when she came today. Lisa came today, and evaluated Tayvah and she has torticolis. It is where the head is tipped to one side and the chin to the other. I asked her when this usually shows its true colors and she said usually around 2 months. She was 2 months on Sunday.

I know that torticolis is not a HUGE deal. But, as another special needs mom said to me, Just because it is "fixable" does not mean I dont have the right to be sad, angry, mad, hurt etc. I guess to ME "Normal" is the average baby who breezes thru with no interventions. Both my kids will need therapy now. Thats tough on my heart. I feel like we cant win. Why us? Again? Really!?!? I LOVE our physical therapist, so Im confident that everything will be okay. She could tell my heart was being ripped when she told me. I could tell she didnt want to tell me she would need "help." She kept saying "She will be okay." I know she will. I know it will. It just sucks. You never want your child to be sick, let alone have any type of condition. My neice had tort so I am confident that it will be fine. It will just take some extra work on our part. Stretching is a regular part of my vocabulary. Now it will be in Tayvahs as well.

While at Tayvahs 2 month appt yesterday, her Dr approached me again about growth hormones for Brielle. He said he was watching her in the hallway and looking at how small she is for 30 months. She is only 21 pounds at 2 1/2.  He would like to do a thyroid test on her, an insulin test and a bone age test on her. He said he wants to look into if her pituitary gland is functioning. This is also tugging at my heart big time. While I DO NOT want to put her thru all this testing, as she has been thru more than I have at 28, I feel it is necessary to make sure her thyroid and pituitary gland are okay. If something is off and we decide to go for the hormones, they may help her motor skills with the Cerebral Palsy, but not always. Or do we just say screw it and let her be 5 foot 100lbs her whole life????? We have some decisions to look into in the next 6 months.

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