Always Anniston
We haven’t been very responsive to all of your questions of “Is Anniston feeling well?” since our last hospital stay and the truth is we weren’t ignoring you, we just didn’t know what was going on or what to say.
Last week, we left the hospital (about 2 hours from our home) with all of her tests being negative. The doctors told us that what we believed to be an illness could in fact just be her new normal with Krabbe.
That is a hard pill to swallow. Of course we know she regresses and of course we know the destruction Krabbe causes, but as parents you cannot help but have a gut feeling when something doesn’t feel right with your child.
Anniston cannot tell us what’s wrong. We have to go by numbers (heart rate and oxygen), we have to go off of her alertness and tone, and we also just have to trust that we know what’s best for her and that we are in tune with what she needs.
With that being said, since leaving the hospital Anniston’s oxygen requirements have been significantly higher than usual. Corey and I did a lot of praying and soul searching to truly try to think if it was Krabbe or if she was sick. Yesterday was a very scary day for us. Anniston struggled A LOT to maintain her oxygen and she was just wearing herself out.
After talking with her PCP about the conclusions of the hospital stay and how we were feeling, we decided to bring her in for lab work and X-rays to put our minds at ease.
Two things would happen with the results: we would either get all negative results knowing that Krabbe had progressed more or we would get answers in knowing what to treat.
A few hours later we found out she has THREE illnesses!! 1. Right lung pneumonia, 2. Flu B, 3. Mycoplasma.
We are starting all necessary treatments to help her, but we really need our prayer warriors backing us up. Last night before bed, Levi said we needed a family meeting upstairs and he then said we needed to pray for Anniston. His prayer was that God would be with us and heal Anniston of any illness and that we would find out today it wasn’t just a Krabbe regression. He said God has carried our family this far and will continue to do so (Cue the mommy tears ).
So please join us in saying that prayer out loud for Anniston’s earthly healing and that God will continue to carry us.
She has finally rested for several hours today. Her little body needs it. We are hoping to stay out of the hospital. I know most people think that’s the best place to be, but honestly Anniston gets so stressed out there and it also opens the door for her to contract more illnesses. We can do everything at home that they would be doing for her in the hospital as of now. If she worsens, it may be an option.
I know this is a super long post, but we had a lot to explain. Anni has a long road to recovery.
#alwaysanniston