Gifts

Saturday, July 31, 2010

Blood work and just getting settled tonight. Had to come in through the ER, took 6 hours - don't get me started. Fasting study and more tests tomorrow.
The bad - many many sticks for Tomas in the near future.
The good - we get our own nurse with the study. Since sugar drops are so dangerouse someone will be here all the time.
The hope - ANSWERS!

Do you think this IV is Tomas proof?

5 comments:

KristinJuly 31, 2010 at 1:14 AM
He's so sweet. What a trooper. Praying you get some rest tonight, and answers soon.
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StephanieJuly 31, 2010 at 7:01 AM
There better be an answer soon! Immediately followed by a solution. Sending prayers!!!
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LaceyJuly 31, 2010 at 11:26 AM
My guess is that IV is probably not Tomas proof!! Hoping for some answers today!
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PattyJuly 31, 2010 at 11:54 AM
He looks like he is seriously planning how to dislodge it. Keep us updated when you can.
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heidi marieJuly 31, 2010 at 1:44 PM
thinking about and praying for you guys everyday. i hope that some answers are found. enough is enough.

and i'm sure tomas will rip that thing right off!
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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

Saturday, July 31, 2010

5 comments:

All about Tomas

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