Monday, November 14, 2011

Bayta is now two years old!

Bayta is a daddy's girl! Don't get me wrong she loves her mommy. But when mommy isn't around or she is trying to avoid bedtime she will cuddle and snuggle in a way that makes me feel complete and fufilled. She is also stubbron. When she is doing something she is not supposed to and you tell her to stop she will look right at you, stick out her chin and continue doing what she was while staring you down. I know it is dad's job to brag on his children, but this one is truly special. At two years old she identify more colors than I can, she can count to 10 and sings the alphabet to me. She is a total parrot and will repeat anything I say. She picks her nose and and when you tell her to stop she will look right at you and say "Why?" She loves her brothers and refuses not be included in any of their activities.

Physically she seems normal. Her belly has always been a little distended, but this is barely noticeable and would be at worst considered a "pot belly." Her scar is very noticeable, and seems to be rising up her abdomen as she grows. When she is asked to identify her belly button she points to her scar and has yet to  notice that hers is different from others.  We worry about her lack of abdominal muscles, but so far she seems to be able to sit up normally. We have essentially been released from care for any issues related to her surgery. We are told that there is a 50/50 chance that at some point the Grotex patch on her diaphram will fail. At that time we will have to take her to the hospital for an emergency surgery. That being said she is completely cleared for all physical activity.

She loves to swim and to run and if any song with a catchy beat is on she shakes her butt like a gogo dancer. (If I hadnt been the one to clean her up I might have thought she was switched at birth!)

The blog is doing its job. Last month over 1700 unique views were recorded. Our hope is that people who have recently found out that their child has an omphalocele or Pentology of Cantrell do not give up hope. While many chidren do not survive,  progress continues to be made and it is not uncommon for 50 year old survivors to be chatting with each other online.

1 comment:

  1. Amen and amen! So very happy to read a wonderful update after a time away. I'm also wondering about Ellis and how he has done long term after his traumatic delivery and hospital stay. They don't seem to have an e-mail address connected to their blog. (that hasn't been updated for 2 years =)