Gifts: We made it through the weekend!

Monday, February 8, 2010

We made it through the weekend!

Hooray for Monday morning. Now. at least there is one stop between him and the hospital. He actually has not got any worse. He isn't any better either, but I will DEFINITELY take not any worse. I'm thinking he's gonna beat it. We still have his low ANC to deal with, but that just means house/car arrest and lots of hand sanitizer until his numbers climb. Thanks everyone.

4 comments:

Eunice MullinsFebruary 8, 2010 at 8:31 AM
Good news!
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Kristen's momFebruary 8, 2010 at 9:10 AM
Such a cute family. I too say life is harder but definately better. Hooray for a normal platelet count. Hopefully this will be a better week and he can fight the virus.
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StephanieFebruary 8, 2010 at 5:59 PM
Thanks to good mothering! Glad he is no worse!
Praying.
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LaceyFebruary 8, 2010 at 7:37 PM
It hard because Jax is trached so its harder to tell what his cough sounds like. But it started as just coughing nonstop! We actually thought it was his airway that was irritated. The respiratory distress didn't start for a few days after the horrible coughing started.
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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

Monday, February 8, 2010

We made it through the weekend!

4 comments:

All about Tomas

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