Week of medical stuff

Jules is mid-way through a long week of medical stuff. Monday, he had a VFSS (swallow study via live x-ray type thingy) and they were able to see that he was aspirating after lots of drinking of his bottle. So, we moved to a thickened formula for bottle feedings to help protect him from aspirating. He is now drinking a bottle with one ounce four times a day. So, a total of four ounces a day of drinking thickened stuff from a formula. He drinks the rest of his food, another 14 ounces of food via his ng tube.

Anyway, he also had physical therapy via boyer clinic where we learned that they think he is looking like a typical three and a half month old. They want to see what the University of Washington High Risk Infant Program discovers about him when they test and analyze him on April 29th for his four month corrected visit. We are going to work on motor skills and stuff with our at home physical therapist from Boyer each week.

tomorrow, he has pulmonary clinic where we will see how he is doing lung wise (he has dropped to .01 on his oxygen flow from .05 when we were discharged from the hospital) and we are hoping to come up with a plan to get him of oxygen. We will have those lovely weekly labs tomorrow, discuss his growth situation, and maybe plan out ideas for moving off of continuous feeding and maybe discuss the g tube surgery again.

Scott thinks he has found a way to rid us of our nemesis -- the medecine pump. If we give jules his anti-reflux vomiting meds in small doses before the rest of his meds, we can avoid massive vomits and give him his meds via syringe into his ng tube. We are on day three of experimenting with this and so far so good. This saves us time(45 mintues of infusion time) and also is more comfy for jules. We can't wait to get rid of one of his pieces of equipment. I am hoping this one gets the boot back to childrens home health care supplies and that the oxygen tanks are soon to follow.

Although, I have heard of babies lingering on .01 until their first birthday, so I'm not getting my hopes up.

Okay, here are some more pictures.

Love,

Joy