Movin' on up, to the east side

So Maddy has been very busy the past 2 days. On Tuesday Amber & I spoke with the doctors about the progression of Madison (or lack of progression), they agreed with us that she was not really improving with her feedings or her breathing. They felt it was time for her to go to Primary Children Medical Center (PCMC), and while this news is a little scary it is also exciting because we know she can now get the help she needs. So on Thursday morning Madison was transported to PCMC to their NICU. Since she has been there we have already had a great team of Dr.'s and nurses, They have been evaluating her and have given her a CT and she is doing a sleep study tonight. We also had the genetic specialist speak with us today to ensure she doesn't one of the many syndromes that sometimes accompanies PRS (i.e. Stickler Syndrome). They do not think she has any of these Syndromes but they don't want to rule it out until she meets with the eye doctor and until they do genetic tests on Amber & myself. So after all these tests and studies they are going to put together a plan for Maddy which may include one or some of the follow:

• Button surgery- This is when they connect the tongue to the lower lip so it won't fall back and block her air way. This can be attached for months to sometimes a year or two.
• Jaw distraction surgery- This is where they saw the jaw in half and put a brace type device on both sides of her face and then slowly extend the jaw over 6-8 weeks as bone grows in the space missing. read here for more info, http://www.pierrerobin.org/jaw-distraction.htm
• other things like a Tracheotomy, a gastro tube for eating, and a few other procedures.

• She will still have the surgeries to fix the cleft pallet but again that will not happen until she is 9-12 months.

They had told us that by today, Friday we would have a plan in place but they wanted to do more tests before they started anything so hopefully Tuesday we will have clear plan. We are both very grateful to have her at PCMC now and feel she can finally get the help she needs, and while St. Marks was great even they admitted there was nothing more they could do for her besides watch and feed her. Hopefully now she can get the help she needs to get on the path towards getting better and being able to come home, Kennedy misses her little sissy. Amber and I are trying to do our best to hold it together but sometimes the wall comes down and we break down a little (Just ask the Shopkeepers at IKEA). We also know that if we continue to have faith the lord he will take care of our family and we thank God every day and night that we have all the support we do from our parents, families, friends & co-workers. We will continue to keep you all updated, thanks again.