Sunday, August 8, 2010 9:44 PM, CDT

Its been a few days since I last posted, things are stressful and we are ready for Elizabeth to feel better and for us to be able to go home and have a "normal" life. In addition to Elizabeths rare lung disease, pulmonary hypertension, failure to thrive issues, we now have another diagnosis to add to the list.
We got the results from her brain MRI which shows she has a neuronal migration disorder called subependymal heterotopias.  This disorder can cause seizures, developmental an intellecutal delays. There is nothing to do as far as treatment for the disorder unless she starts having seziures and needs medication. At this point she will just be observed by neurology and we will continue with her physcial therapy to ensure she does not get farther behind developmentally. Knowing about the disorder in advance will better prepare us for any other possible delays she may have. And if she does ever have seizures we will know the cause and can be prepared. We are trying to take this new issue as it comes, just because the disorder says these things may happen doesnt mean that they will.
We were planning to go home tomorrow (Monday) but Elizabeth had a slight fever on Friday and it appears she has an infection arouond the gtube incision on her belly. So they wanted us to stay a little longer and start antibiotics to make sure she was doing better. Hopefully we will be leaving Tues or Wed now.
Matt and I both truly appreciate everyones concern and support. We are beyond grateful to our parents and sisters who have taken time out of their normal routine to make NUMEROUS trips and overnight stays to be here with and for us. We have had someone with us everyday since we have been here! We know there are lots of people who are not fortunate enough to have that kind of support and hope everyone knows how much we appreciate it.