I didn’t know I was going to write today. Just kind of logged in and decided to start going. The past week or two have been tiring. Between Bella getting some sort of virial infection, Savayah having an unusual amount of energy, and me hurting my back, it’s been hard to get anything done in the little time I have. For now Savayah is resting, I’m getting Bella wound down for the night, meds and food. Jack is already curled up and sleeping by mommy’s feet. I still have plenty of work to do for school, to keep what little money we have coming in, coming in. We’re hanging on by a thread, but we’re doing our best to keep smiles coming.
I realize in telling the rest of our story, you don’t really see our day to day, even with all the sidetracking and off subject rants I tend to go off on. So tonight, lets take a break from the rest, and learn a little about our days.
Savayah has been waking up around 3am lately. I’d say it’s about 50/50 at this point if I can get her back to sleep or not. Not sure why, at first we thought she may be sick, but now not so sure. Bella tends to wake around 10am or so, not that she sleeps in, she just finds it hard to sleep at night, after everything we go through during the days, she still stays up after the rest of us finally get to sleep because she wants to make sure everyone’s doing ok. She even tries to let me sleep as long as possible if Savayah wakes up, if she can find any strength to help Savayah back to bed. It’s not often, but she knows how hard I work trying to keep everyone safe, happy, and healthy. Her only wish is to be a good mom, and it’s why we try every day to move forward, to make progress, to look for answers… It’s a hard life for us all, but we want the world for our baby girl.
The days themselves vary. Some worse than others, and every once in a while a good day. Mostly its pain, with little glimmers of hope. Bella feels sick most of the time, and even that isn’t consistent. The chest pain is always most worrying, coming at random and always debilitating. No one knows why or how to explain them. It’s also hard to gage when to take her to the ER, and the limit tends to be so much higher than anyone else would even be able to bare. Not to mention the weakness all over, especially after anything bad happens like the chest pain, or something as simple as stubbing a toe can set everything else off. No matter what, she still tries to use any ounce of energy to be around us, even just for a car ride around the neighborhood, or to wait in the car while I run into the store with Savayah so we can get food for the next day or so. Little things, to feel somewhat normal.
She’s so strong, and beautiful, and smart and amazing every single day. Even more so on the days she’s unable to get out of bed. The days everything to too unbearable, and she has to put aside those needs to hopefully have the energy to keep going the next day, or hopefully keep us all out of the ER. Stress is constant, and we do our best to work past it.
On top of all of that, we do our best to help anyone we can. In any way we can, which usually isn’t much, but if we see someone in need and we’re able to do anything at all we do. We know how hard it is sometimes and how much we need help, that we hate seeing anyone else in the same situation.
The doctors we see are quite vast. We’ve been referred, researched, and seen just about every specialist that is even remotely relevant to her case. It’s to the point her doctors are referring her to the NIH (national institute of health). We’ve made contact with them, got plenty of doctors recommendations, and we’re denied unfortunately. We’re in the middle of an appeal, and trying to get the doctors we see currently to send the info the NIH needs, because they didn’t the first time around. Test results and observations, any tests the NIH recommends that the hospitals can run, and any of the other tests we had to get out of pocket so they have a good enough start to say the hospitals have done all they could, and they’ll accept her.
On top of that we’re trying alternative methods, trying to gather relevant info to send to Dr. MM, and making progress using genetics and possibly could help pinpoint a cause of all of this, though it’s a long shot, we’re trying everything, and he’s been nice enough to talk to us, and look into our case.
I literally don’t think we could do more without killing ourselves entirely; But we’re trying. The nights are the only time I have to really get any work done outside of hospitals and driving. It’s also the only time we really have together without the stress of everything else, even if we’re still trying to figure out life and the meaning of the universe. However that’s mostly a side project, but we’ll get that too I’m sure.
I feel like that should be enough for the night. I’m tired and would like to cuddle a little if I have the chance. I love my little family, and I know we’ll get through all this somehow. We’re grasping at straws, but I know one day we’ll find the right one, and finally have our lives back away from all the doctors and bad days. So goodnight anyone who’s reading this, please share, look up #helpthehero, and if you’re able to donate to help us out with our travels to mayo clinic and beyond, please do we’ll be ever so appreciative and I promise if we ever start playing the lottery and win, I’ll buy everyone something lovely. Sorry if I don’t make sense, but I’m running on about no sleep for the past two days, and if I don’t stop now, everything will make less sense than it already does.
Goodnight, and thank you for reading,