This is still hard for me to believe but here is the evidence. This morning he actually clapped and got excited when he saw it - weird little person that he is!
He has a swallow study tomorrow morning. I'm not looking forward to it. But the new pulm doctor wants new data. His last study was Sept. '09. Wish us luck!
I am so impressed with Tomas and the stander.I read the previous post and ... wow!I think this might be in order for Zoey.Everyone has a different opinion but the fact that she is always looking up at her world I really think a new view would be great for her and to strengthen her legs,added bonus.We'll see what her PT says when we revisit the subject.Her Rifton walker is gathering dust.
Now to the husband,wow again.No toilet or bathroom or any other kind of cleaner,in this house.I wish.With 4 1/2 baths ... I would KILL for a toilet scrubber person!
Good luck with the swallow study and finding answers on the bloodly goo.Could it be an inside fissure?One that can't be see from the outside?Does that make sense?
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.
"The real choice in accepting or rejecting a child with special needs is never between some imaginary perfection or imperfection. The
real choice is between love and unlove, between courage and cowardice, between trust and fear. And that’s the choice we face as a society in deciding which human lives we will treat as valuable, and which we will not. "
.jpeg)
He's a big boy now! Good luck tomorrow!
ReplyDeleteI am so impressed with Tomas and the stander.I read the previous post and ... wow!I think this might be in order for Zoey.Everyone has a different opinion but the fact that she is always looking up at her world I really think a new view would be great for her and to strengthen her legs,added bonus.We'll see what her PT says when we revisit the subject.Her Rifton walker is gathering dust.
ReplyDeleteNow to the husband,wow again.No toilet or bathroom or any other kind of cleaner,in this house.I wish.With 4 1/2 baths ... I would KILL for a toilet scrubber person!
Good luck with the swallow study and finding answers on the bloodly goo.Could it be an inside fissure?One that can't be see from the outside?Does that make sense?
Very cool. I bet he loves his new view on life. He is such a cutie! Good luck with the new doc ;)
ReplyDelete