Gifts: Various forms of baby torture

Sunday, July 25, 2010

Various forms of baby torture

First, being forced to wear a pink hat by devilish sisters:

Second, the new improved version of CPT (chest physio therapy). It is like the old CPT (me tapping on his lungs) but on steroids! Luckily he seems to have found a way to enjoy it.

3 comments:

LaceyJuly 25, 2010 at 11:35 AM
I love how kids like to listen to their own voice with the vest! Is that your vest? Here we have had major problems getting insurance to pay for them if you don't have CF!
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Eunice MullinsJuly 25, 2010 at 12:34 PM
No matter what the torture he manages to make everyone smile!
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KristinJuly 25, 2010 at 1:12 PM
That is too cute!
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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

Sunday, July 25, 2010

Various forms of baby torture

3 comments:

All about Tomas

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