Welcome to Maddie's Blog!

Hallie and Maddie were born in January 2007. Maddie experienced severe hypoxemic respiratory failure at birth, and spent her first five months at Children's Memorial Hospital in Chicago. Both Maddie and Hallie have been diagnosed with ABCA3 'abnormality.' Maddie developed chILD and Hallie is currently asymptomatic. Maddie is on oxygen 24 hours a day (05. LPM baseline) and gets G-tube feedings.


Friday, January 11, 2008

State of IL and Home Care Help

We've been experiencing a bit of a crisis involving home health care. It's a long story - but becasue of this crisis, I've been searching for assistance in IL. I found an old letter that outlines all of the State of IL programs available to parents with chronically ill children. I will scan that letter and post it on Maddie's web page - in case a fellow Illinoian needs to navigate the 'resources' available.

http://blue.wths.net/faculty/schmit/maddie.htm

Thursday, January 10, 2008

First Hospital Admission - Jan 2008

Well, we made it through Oct, Nov & Dec before Maddie had to be admitted to CMH. Thankfully it was a short stay - we just needed to tweak her meds to get her breathing and heart rates normal again.

The result of our horrendous experiences without ear tubes is that they will be going back in, as as soon as we can get Maddie over her current ear infections. She just can't handle the infections and then a viral illness on top of it.

And, we see now the need to find a pediatrician who is willing to work with pulmonology, and treat Maddie's illnesses agressively.

Hallie is still pounding on - despite coming down with bronchitis. She's doing well on Zithromax and Bactrim ... and hopefully the twins will not share future infections! (I can dream,can't I?)