Some More Docs

We are well into Spring and things are rolling around nicely here!

Jayden got sick this week but got some meds and is responding pretty well to them, which is such a blessings and definitely a sign we are heading into our favorite part of the year - the non-sick part:).

We started our next rounds of appointments with docs this week. We met with pulmonology and they got the final genetic testing back confirming he has no traces of cystic fibrosis. He is still not growing well though, even with the added nutrition and calories, so we are heading to see an endochronologist because Dr. K said he can't just chalk it up to respiratory problems and definitely not to caloric intake.

We actually removed his feeding tube after waking up a few times to his tube wrapped around his neck - SCARY. He was always ok and it was never tight, but we don't want to even chance the possibility something may happen with it so he went back to drinking his formula from a cup.

We did get nurses to help us out, but it wasn't exactly what we were hoping for and have been a little overwhelmed with the additional people in our house/lives all the time. We just needed a little help (at least at this time) with the IPV and instead we have someone around nearly all our day, which is challenging. We are hoping to reduce the visits to daily 1 or 2 hours a day instead of the 6 hours they currently are.

Besides that we are all good. Ethan and Jayden play a lot of going to the doctor and Ethan has been a little upset Jayden hasn't been in the hospital because he can't play with the toys in the 5 South playroom - oh darn.

Hope all of you are very blessed during this Easter season. I will update soon with some fun pictures and videos!