Bingo Night!
We had a friend put together a Bingo Night Fundraiser for Graycee in our hometown of Cleveland, UT. There was Bingo, Dinner, Root-beer floats, Silent Auction, Live Auction, and a Gun Raffle. We received donations from many companies and individuals for the fundraiser as well as in the mail for Graycee's donations account. The night went so well and I was in compete shock at how many people showed up to support us. The community we live in is so amazing! I can't express or say enough just how Thankful we are to all that helped us out in every way possible.
March 16, 2015
Appointment with Dr Heflin.
Her x-ray showed her to be 5 degrees worse than the last appointment she had. He thinks she is now big enough for the smallest VEPTR that there is but is wanting to wait til she is 16 months now to do the surgery just to allow a little more time for her because she is so tiny. There is also the possibility of her spine being fused to itself as well as her ribs but can not be certain of it until later on. Her heart has also adjusted and is more on the right side of her body, which just shows that her body is adjusting and doing what it can with the room that it has right now. As far as the centimeter of her lungs she is about half way of what he would like it to be so she has a long way to go. He explained a little more in depth what is going on with her ribs and what they will be doing. They will be cutting apart every other rib and the ones in between will be cut from her spine and be a floating rib to allow for more room for her lung. Her incision will be from her spine down and clear over to the her side in an 'L' shape. She will have the procedures done every 4 months and then as she gets older they will do every 6 months as well as using a magnetized VEPTR when she is big enough so that when it does need adjustment it can just be done in the office. They will be waiting as long as they possibly can to put the rod along her spine. When she has that in she will not be able to bend very much so they like them to be older. As far as being able to play and do kid things he says she should be alright just does not want her jumping and bouncing around. He told us on the outward appearance just looking at her she doesn't look to bad and is actually very well balanced for what she has but when looking at her x-rays she is a very complicated case but feels confident that they will be able to help her out. Lungs only have one shot at growing and stop growing when you are 6. The lung itself grows but the air pockets don't expand anymore then what they have at 6. When she has the surgery she will have to learn to breathe more with her stomach then her chest and he says looking at her that she should have no problem adjusting to that. She will have the procedure done at Primary Children's in Salt Lake and will stay there for at least 5 days with the first 2 days being in ICU. He left saying that they have had amazing results with the VEPTR and He wants to get together with his partner to discuss exactly when and what they would like to do with her and will give us a call within the week. They won't be able to set an exact plan because they only have a general idea from the x-ray.
March 26, 2015
We have a set date for her first surgery. June 29th! It is a 4 hour procedure and she needs labs done the day before and she will have a pre-op appointment on May 18. Thanks again to all those that have supported us! Thanks for reading about her update :)
