Gifts: We're heading out!

Wednesday, September 29, 2010

We're heading out!

Got the last call yesterday afternoon, everyone has cleared him. I am in a packing frenzy and trying to scramble for oxygen when we get to FL because the DME company messed up.
Wish me luck, and wish the germs to stay far away from bubble boy!

4 comments:

Eunice MullinsSeptember 29, 2010 at 11:03 PM
Good luck, have a safe trip and HAVE FUN!!!!
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KristinSeptember 29, 2010 at 11:25 PM
Enjoy every minute!
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StephanieSeptember 30, 2010 at 5:45 AM
have a wonderful a dare I say stress free time!

Don't worry I just knocked on something wood!

Hugs and prayers!!
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KristinOctober 2, 2010 at 11:28 AM
I just gave you an award on my blog :)
Stop by to pick it up!
http://www.twodogsandafish.blogspot.com/
after your vacation of course!
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All about Tomas

When I was around 5 months pregnant an ultrasound revealed a birth defect (duodenal atresia - a blockage between the intestines and stomach) in Tomas which also meant he had a high chance of being a Down Syndrome baby. About a month before he was born I had an amnio that showed he did indeed have DS. He was born on January 16, 2009 and had his first surgery when he was 32 hours old. After that, test result after test result rolled in. In the first month my family learned he had three holes in his heart, his liver was not working, and he had Transient Myeloproliferative disorder (a type of leukemia which resolves in the first few months of life). The second month revealed laryngomalacia (a collapsing larynx), primary and secondary aspiration, and severe reflux. He was switched to tube feedings and had his second surgery to correct the reflux that was causing him to suffocate. The TMD resolved when he was 4 months old, his liver started working when he was 5 months old, and the holes in his heart have closed without intervention. After that we found out his left lung is partially collapsed, he has a stomach hernia and a liver hernia and multiple bowel hernias, and was recently diagnosed with neutropenia. He had another 2 surgeries. He is on J-tube feedings, requires oxygen support, needs to be on a pulse oximeter monitor, and has 10 specialists who follow him. He is exactly what I never knew I wanted. He has taken our family and carried all of us to a place where every smile matters, where the days breathe with possibilities, and joy reigns supreme.

Gifts

Wednesday, September 29, 2010

We're heading out!

4 comments:

All about Tomas

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