The Collaborative Team at Children’s National met this week and it has been decided that Ana needs additional testing, under anesthesia, at their facility. They are also consulting with gastroenterology. Once the testing is complete they will have a better idea of what they can do to help ￼alleviate the pain that she is having. I will not go into further details on what they are thinking at this point to refrain from causing unnecessary worry on Ana’s part. We are leaving it at that for now, since nothing is for sure until after the actual tests are complete.
We have lots of concerns that revolve around the logistics of all of this. I will file FMLA, but Shey has no available PTO or resources to be able to accompany us. Unfortunately, with government contract employees, you are at the mercy of whomever the government gives the contract to and this particular business has decided on no PTO until September of 2020. As for me, I should be ok for the testing and then it could get sticky once they know what needs to be done next. If surgery is the only option, then that will mean out-of-state surgery and recovery. With Ana, recovery time is unpredictable. To further complicate things, we have the holidays and the potential of having to make two trips pretty close together. Thankfully, I have a little PTO and my work will add two weeks of full pay before the short term disability pay kicks in... which is not great pay... but nonetheless, it is something. Add school and selling a house into the equation and it gets pretty overwhelming. And then there is Christmas... We do care about that being special for her.
We are waiting to hear back from the team on dates for the testing and consults. They will then refer us to their ￼concierge who will work with us on housing once we arrive in Washington, D.C. The Ronald McDonald House will obviously be the cheapest option if they have rooms available.
For now we wait and pray. Pray for answers. Pray for the financial situation as a whole. Pray for the timing of everything. Pray for everything surrounding this situation. Pray for a cure for mitochondrial disease.
Sorry for the absence in updates on this page, but we are using Facebook more often than Blogger these days. This is the latest.
Her Facebook Link: Help Cure Ana Maria