Saturday, September 6, 2008

We Love CHOP!

It was a long day, but a good one. A bit bittersweet, but the sweetness was ALL from GOD. The drive over to Philly was a good one. Kenny and I talked about so many different things. It was good to just be with my husband. We laughed quite a bit. We talked about how strange it is to be as joyful as we are in the midst of what is happening with Maia, but we chock it up to the fact only the Lord is giving us this joy. Are we sad about the prospect of our daughter's future? Yes. We would definitely prefer to go a different route, but at the same time God has girded our hearts.

The staff at CHOP were sooo hospitable and encouraging throughout the entire process. Through the paperwork, hour and 20 minutes on the Ultrasound table (ouch for my sciatic nerve!), and the hour long consultation.

So here is the nitty-gritty.

The praises first! Maia's great vessels that lead out of the heart do not seem to be affected by the disease and also there is no VSD! Two things we were worried about and now those have been eliminated.

Now the sobering part. She does have hypoplastic right ventricle, triscuspid valve stenosis, and severe pulmonary valve stenosis. The staff is hoping the triscuspid stenosis is mild and not moderate to severe. If the tricuspid valve is not compromised then there is the possibility that Maia may only need a balloon procedure for her pulmonary valve conditioning it to open up more for blood flow! The balloon would only need to be inserted via catheter in her femoral artery and up into her heart. The heart might over time repair itself. See diagram below.

NOW....if the tricuspid valve is poor then surgery will have to be performed to place a BT shunt into the heart to open flow in a different spot. This would involve opening her chest and putting the shunt in the right location. What is very encouraging is that what use to be a 50% survival rate for these little ones is now a 90% survival rate after the BT shunt is in place.

It was an informative and overall encouraging time. We are relying on the Lord each day to provide us the the wisdom in the decision we make for Maia and for His glorious peace and of course for His miraculous works!

On a lighter note...after the specialists it was time to head home to New Jersey and we were a bit hungry. I mentioned on a earlier blog this year that we missed an opportunity to eat at a Bobby Flay showcased restaurant from his Throw-down show called The Pop Shop in Philly. Well, we entered Pop Shop into our TomTom GPS system and low and behold it showed up! It actually took us to a secondary location in Collingswood, NJ near Camden (right across the Delaware). It was fun! So below are some pics from our time there!

Outside of the Shop in a cute electic area of town.

Kenny deciding what he wants from the menu.

50's style Soda Stand and Paper Hats with the Staffs' Names

The Frazer...Kenny's Choice it had chipoltle, chicken, jalepeno cheese, and carmelized onions.

The Calvert (Featured on the show) Bacon, Avocado, Turkey, and Homemade Sauce.

Some of the Best Onion Rings I have had in a long time....better be for $8!!!!


Some Memorabilia you could leave with after your dinner here!