Again, nothing new to report on Eden. She's growing and doing incredibly well. The boys have their ups and downs that stem from getting less attention from us because of her health issues and we're tackling those as they come. But, we've figured out a way people can help.
Money. It's almost embarrassing to ask, but we'll need money to get through this. We live on one income and we're pretty frugal, so we're able to put aside a little bit every month, but not much. We do have some savings that we are fully prepared to drain to take care of her, but if people are willing and able to give to help us, we're not too proud to take it.
We're in the process of setting up an account specifically for her medical bills and expenses that come up because of her medical care. Here's just a few things:
Synegis: She needs this RSV antibody shot once a month during RSV season before she's a year old. That's going to be nine total shots in her first thirteen months of life. The cost of these shots is about $1800 each and as of right now, insurance is not covering them.
Out of pocket medical expenses: our out of pocket for her is $3000 per year. There are still costs on top of that, things we don't even know about yet, so while a lot of things are being covered completely, we still get periodic bills from hospitals, doctors, labs, etc.
Travel expenses: we'll have at least four, possibly more, trips to Dallas during all this. One for her heart catheter procedure and three or four during her hospital stay. Austin is going to stay in Abilene with the boys while Tali is in Dallas with Eden. He'll be in Dallas for a little while at the beginning and then hopefully will be able to come on the weekends to give Tali some relief and in-person support. As much as we can, we'll stay at the Ronald McDonald House and in the hospital, but if necessary, we'd have to stay in a hotel. Also, Ronald McDonald House will let families stay for free but will also accept money. We'd like to pay some to support such an amazing opportunity for families but if we can't, we can't.
Other things: So far, our other expenses have been hand soap (moisturizing antibacterial soap is actually kind of hard to find and not super cheap) and hand sanitizer. We are fortunate enough that I have copious amounts of breast milk and got several cans of formula to add to it for free, but if they want us to continue that indefinitely or increase her fortified bottles, then eventually we'll need to buy formula.
We have more clothes than she can wear multiple times before she outgrows them, we have a freezer full of food (though I will be stocking it up before leaving for a month) and childcare for the boys for the month I'm gone is taken care of. Now that the weather is warm and we're nearly through RSV season, we're getting out more so childcare isn't as big of a thing as it was earlier. I just strap her to my chest and we go to the store or on a walk or wherever we need to go. She seems to enjoy it for the most part.
We have set up a GoFundMe, linked below, to make it simple for people to help us. We've got a goal of $25,000 but we will be happy with anything. That amount should cover everything detailed above and hopefully somethings we didn't think of. Anything "extra" we'll keep in an account for her medical expenses in the years to come. We'll very likely hit our $3000 out of pocket every year with her for quite a while. If we don't, we'll keep it for her for college someday.
There are fees associated with GoFundMe that come out of the amount donated, so if you'd rather give us something directly, that's ok, too.
As always, thank you so much for asking us how she is, for praying for her, for sending her good healing vibes, for whatever you've done for us. We appreciate all of it.