Nurse Shelli from Seattle called me this morning! She was very interested in hearing about Blair and answering any questions that I had. She is going to look at this link as well as the one for Zack (since he was treated there) with the surgeons and see what they can come up with. Obviously they don't want us to come all the way out there if we can get the same kind of treatment closer.
I also have some reservations about St. Louis "trying" what they did on Zack. But, I do feel comfortable with having the Occupational Therapist at least look at it and talk back and forth with the OT in Seattle. Plus, if it's something new for them and works then I'm all for it! I want it to be something that they would try on other kids as well!
Hugs - Tiffany
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Omphalocele and PPH/RVH
This page is for Baylee and Blair. Blair was born with a Giant Omphalocele on April 7th, 2008. She spent 7 weeks in the NICU at AR Children's. Amazed by the Dr's she came home at the end of May only on a little bit of O2 and no other medications. She was also diagnosed with a 3mm VSD of her heart. That has since CLOSED COMPLETELY and will not require surgery. Recently we found out that she was born with her heart on the right side of her chest. She had surgery on Aug. 20th without expanders. The Dr's were able to do a closure surgery with a bit of alloderm pulling the muscles together. We will be in St. Louis for a few weeks while she recovers.
Baylee is an energetic 4 year old. She loves swimming, her babydolls, playing outside and most of all her little Sissy! She is our little princess and we have been amazed at how well she has reacted to her little Sissy. She is WONDERFUL to her little sissy and loves her so much!
She was diagnosed on April 13th with a Right Ventricular Hypertrophy due to Primary Pulmonary Hypertension. In July we traveled to Boston to see a Hypertension Specialist. I LOVE this Dr! She is wonderful and answered all of my questions. She will have another Heart Cath on Dec. 1st to check the pressures in her heart again. She is now sleeping with a bit of oxygen just as a precautionary.
I hope that everyone enjoy's reading about our lives and if you learn something in the process that's even better!
Baylee is an energetic 4 year old. She loves swimming, her babydolls, playing outside and most of all her little Sissy! She is our little princess and we have been amazed at how well she has reacted to her little Sissy. She is WONDERFUL to her little sissy and loves her so much!
She was diagnosed on April 13th with a Right Ventricular Hypertrophy due to Primary Pulmonary Hypertension. In July we traveled to Boston to see a Hypertension Specialist. I LOVE this Dr! She is wonderful and answered all of my questions. She will have another Heart Cath on Dec. 1st to check the pressures in her heart again. She is now sleeping with a bit of oxygen just as a precautionary.
I hope that everyone enjoy's reading about our lives and if you learn something in the process that's even better!
4 comments:
oh tiffany! you are such a fantastic mom doing all this research and pushing these places to try new stuff. and just a fantastic PERSON to hope it can help other kids with the same thing. the pictures of zach were amazing! can't wait to see blair's tiny O pictures in a few months. w'ell be praying for you guys!
kelly
Thanks Kelly! It's definately been a long process so far, but I know the results will be great! I'm hoping they can help her... it can't hurt to try it!
Hugs - Tiffany
It look like Miss Blair picked out the right Mommy!
I'm so excited for both of you and so proud of you for pushing this issue.
Tiffany I have been watching this site and your space. Although I have had no time to post . I just wanted you to know I am thinking about you and praying as well.
I am glad to read that your doing what needs doing for Blair. I think your right to research what is best. Amazing the results for Zach. I to hope the same results for Blair.
I still have Club Sammich and my other blogs! Just wanted you to know think of you and yours all the time. Just kinda lurk and read,having my grandbaby..most or the time just hard to post.
Take Care.
Always Hope
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