Gifts: Snow

Thursday, February 11, 2010

Snow

I braved the weather for pulmonary appt.s for Tomas and Olivia this morning. The roads were actually fine and the scenery was beautiful. Olivia said it looked like Narnia. I'll catch everyone up on what all the doctors and therapists said this week, but for now just enjoy the snow. We could get up to 8 inches!

3 comments:

LaceyFebruary 11, 2010 at 5:50 PM
All I can say is, good thing its you and not me!
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StephanieFebruary 11, 2010 at 8:08 PM
It's beautiful, and those are some snow stylin' girls there!
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KristinFebruary 12, 2010 at 1:03 AM
Your last post brought tears. I feel like our 'fight' is pretty much over - because we're healthy, not because we're giving up! I can't imagine being in a constant battle for our little ones health. Tomas is so stinkin' cute. Hope you're resting between battles!
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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

Thursday, February 11, 2010

Snow

3 comments:

All about Tomas

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