Weekend Blues

Bella isn’t doing well over the last few weeks. There isn’t a lot of time to leave the house or explore the world, or even run errands unless I’m able too at night after Savayah is down and I’ve got Bella set up for the little bit of time I’ll be out to grab food or something we need for the house. I even won a Facebook contest for a tattoo, but haven’t been able to make an appointment that hasn’t been cancelled and moved every time. So for those we know who may happen to read this, I’m sorry we haven’t seen you lately or called, we’ve been a bit busy.

We’ve been working on getting her to a stable level. Enough for me to be able to go back to work full time, or even school for my 1 class a semester on campus. We’re holding on, and for the most part on our own. There have been a few people who have helped immensely lately, and I’ll wait to ask their permission before I name them to thank them on a larger scale or at the very least in this blog. However if you guys are reading this, you don’t know how much we love and thank you, we would give you the world if we only could. I’m working on getting everything set and ready for a long distance trip, including doctors and mapping out ER trips along the way, just in case.

In the mean time, we had a small “birthday party” for Savayah. We decorated pretty awesomely using dollar tree decorations, and invited everyone, slapped together last minute. Not too many people were able to come, but Savayah had lots of fun and way too many cupcakes lol. The rest of the weekend we were all sick, but her happiness was worth it. Still recovering into today, but getting back to normal slowly but surely.

Every day is a fight, and even though Bella tried to be tough through the party, it took it’s toll, and most people wont see that. They’ll see she was there with a smile on, and being somewhat sociable, but not see the next 5 days of recovery for pushing it too far so we could bring a smile to Savayah’s face. It’s been rough, even more so since on top of everything else I also got sick. Made my job a bit more difficult and I was a bit more exhausted than usual, with a few aches all over, but I know it’s nothing compared to what Bella or Savayah are feeling or have been feeling.

Our life is a constant balancing act of what we can do vs what it will cost, both monetary and physically. We are on a limited budget that we kind of messed with just to get the cheap decorations and extras to make Savayah feel special, but also the toll it’s taking on all of us physically, it’s been hell but we’d do it all over again. We’re used to the struggle, and setbacks won’t stop us.

We also heard back from the NIH finally, and they won’t accept us or do an appeal unless Bella gets significantly worse or there’s new information that comes to light through testing of our own. When Bella gets her exome genetic testing back, hopefully it sheds the light they’re looking for but as we’ve come to learn over time, we aren’t holding our breath. It’s hard organizing and corresponding with the vast number of doctors Bella see’s, to get everything that’s needed together and in order for what outside doctors or the NIH need.

However we push forward. Sorry it’s just a mini little update today, but I’ll get into the heavier stuff again soon, it’s just been busy, and things tend to pile up rather quickly. Hopefully by tomorrow things will be more normal/on track. Thank you for reading and please share. Follow #helpthehero on FB and Instagram. If you’re able to donate to our cause we will be eternally grateful and I promise it all goes towards travel and health related expenses. We’re getting close to an answer and treatment, I can feel it. Thank you again for reading, and for everything else.

With love,
Brett

 

 

 

 

 

 

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