1) He will remain pneumonia free
2) His acid reflux will resolve on it's own and he wont have to have a Nissen wrap (another surgery)
3) Continue to get physically stronger
4) Become vocal again, he has become very quiet lately
5) Become strong enough to drink liquid and someday come off of his feeding tube!

1) Nathan can roll over from his stomach to his back on his own.
2) He can eat purees. He loves to eat!
3) He has made it through the sick season so far without many respiratory issues.

Nathan was born April 21st, 2008 via c-section at Silverton Hospital in Silverton, Oregon. We were expecting a healthy boy, but we would soon learn differently. Immediately we noticed the immense amount of thick, black, hair on his head, back, and shoulders in addition to a pointy nose, a crooked right thumb (which we thought was broken) and the fact that he couldn’t cry. After a short time, Nathan went into respiratory distress and was immediately put under an oxygen tent. For the next thirty-six hours we couldn’t get Nathan to feed and he needed continuous oxygen. At the recommendation of my Obstetrician, we requested him to be transported to Oregon Health and Sciences University. As the specialized transport team (PANDA) from the hospital came to stabilize him for transportation, it was clear to us that there was something very wrong with Nathan, but we remained optimistic. Shortly after his arrival at OHSU, Nathan was visited by a doctor of genetics and given the diagnosis of Rubenstein-Taybi Syndrome. Of course, we questioned it right away because I had so many ultrasounds and blood draws during my pregnancy and nothing was ever detected. The geneticist told us that Nathan had all of the characteristics of Rubinstein-Taybi Syndrome; broad flat thumbs, pointy nose, excessive black hair, high-arched pallet, undescended testees, respiratory problems and more. Although it was difficult to come to terms with (and still is, at times), we accepted his Diagnosis and began investigating treatment. After only a few days in the Neonatal Intensive Care Unit, the nurses taught Nathan how to suck and swallow, and he began to successfully feed by mouth. After a short bout with jaundice we were discharged and instructed to follow up with a list of specialists. Despite all that Nathan has had to deal with, he is a strong, happy little boy. He loves his two and a half year old sister to pieces. If we ever get worried that Nathan can't make noise, we bring his sister into the room and he just laughs and laughs for her.


Anonymous said...

I will pray for Nathan and you and your family. He is adorable and lucky to have such a loving family.

Good Luck to you.

W McCallum said...

Praying for you and your family Nathan. W McCallum xx