Thursday, July 3, 2008

Shark Attack...

We are home and very happy to be getting back to our "normal" life.  Gavin's IV antibiotics and anti fungals end today -- a huge bummer.  Gavin is now on his own to fight infection, which we all know by now that his bugs tend to win.  Gavin is doing ok but has been struggling to recover from this last admission.  He has been extremely bradicardic, low heart rate, which is scary for Adam and I when his heart monitor just doesn't stop alarming.  

The plan of action right now is basically to continue to avoid infection, which really we have no control over.  We are also trying to see a Dr. at St. Chris's in Philadelphia who specializes in Mitochondrial Disorders.  The wait for Gavin's wheelchair is growing long so we are hoping is comes in the near future.  Our Docs are also still working on getting us out to Pittsburgh for transplant evaluation, though we still are up in the air about that whole situation.  Please pray we can stay home for at least a week or so -- I'm just not ready to go back yet!





5 comments:

Heather Nicole said...

I love the pictures!

Sarah said...

Amen! the pics are the best! Here's to praying for more than a week home! :)

Heather said...

How honored I am you would stop in to our site and then allow me the opportunity to share in a glimpse of your journey with Gavin.What a gorgeous,resilient,courageous,beautiful boy you have.I actually don't have enough adjectives to describe him!It is in finding and sharing of each others stories that sometimes allows us to feel not as alone. We knew we weren't but it's comforting in a weird, "wish we weren't in this place", kind of way.I also know that it can absolutely be such a private and personal road and I am privileged that you stopped by. Another beautiful family that I will hold in my heart and add to my prayers.I hope that the love of family and friends lend support and strength when you need it and that the grace of God carries you as you all journey forward.

Anonymous said...

We are so very happy that Gavin is out of the hospital and got to enjoy some family time at the beach! He is absolutely adorable and your family's strength is an inspiration to us all.
Holding you in our prayers,
Nora's mom, Sarah

brandiandboys said...

beautiful photos, especially love the new header. you have such great vision with photographs!

praying for gavin and for a hospital break for the whole family.