We have more and more good news, which seems a bit surreal after the last year!
First, my eyes they think maybe will be fine! There is an infection, and something auto-immune going on, and so the eye doctor doesn’t think he can get rid of the infection entirely. But, he has new drops for me, and they are working enough for most of the red to be gone and all of the pain. I am okay with that!
I did go see my regular doctor yesterday, and he had all kinds of labs drawn, just to be sure we have covered everything. But other than some pain in my hands and hip, and being generally tired (which could be attributed to having eight thousand little children in the home), I am doing really well these days.
The other big news is for Kyrie, who made it through all three hours of church this week, for the first time ever. She even went to nursery for the last ten minutes! She slept the rest of the day, but that was huge for her!
We heard back from Utah this morning, and Kyrie will not be going there for a trach. There are many pieces to this, but one is that we misunderstood what the hospital had said, or they told us differently what the doctor had said, or something. If we went there, we would be starting from scratch with a new workup at that hospital, redo her testing, and let the team of specialists there decide what was next, even if we knew which ENT we preferred.
Medicaid won’t cover that, since she has had that in Cincinnati and locally, and won’t start over with a new hospital. They, and we, had thought it could just happen and was just needed to be scheduled and contracted. We misunderstood that.
Plus the nurse told us that the doctors know what they are doing now, and to trust them.
That leaves us resigned to following orders and letting her baseline be her baseline as it is, instead of thinking we can improve it. I am pretty sure her pediatrician has already told us that, so maybe we should have listened then. We were on a learning curve, and had a lot to soak in.
Her early intervention team thinks she still needs a trach, and that if she had a trach we would also not need the feeding tube ever – and for sure not a gtube – and that her gross motor skills would catch up.
But they are not the doctors. They can’t make it happen.
We are convinced that if they had trached her in the beginning, a year ago, that she would not have had the hospitalizations that didn’t make sense, or have to battle the struggles she has endured – including a stroke because of being in a coma for two weeks, or medical cerebral palsy from waiting so long to get help breathing.
We fought hard, and we fought for a year, but now that year is over.
And maybe our vision is a little clouded by some kind of parental-medical-PTSD from the beginning of last year, when she was first born, and when we had no help at all.
And, everyone says that PRS babies get better after a year, because they finally grow and get stronger.
Maybe, we think, her mark of being a year is just coming a little late because she was born early and as a drug baby.
So maybe we are just now getting to her real year, and we will see improvements now.
Or maybe we have been in denial, and just caused a whole lot of problems by fighting for what we couldn’t really change.
We aren’t the doctors, and we don’t know anything, and there have been so many people telling us what to do or where to go or what would help or what never to do.
She has good doctors. She really does. We love them. They are kind and patient. They think we are crazy because we have tried too hard, but they love her and take good care of her. They can’t change the fact that she wasn’t trached a year ago anymore than we can, but what we can do together is take care of her now.
So this is our baseline: sometimes we have a blue baby, with random desats that can be scary or not, severe incidents that no one can explain and after which she is usually fine but takes four days to recover from, and needing the ng tube from time to time to bounce back from illness or those inexplicable incidents. Most of the time she holds her sats just fine, but needs more sleep to recover from any kind of activity. Gross motor skills will always be behind because she doesn’t have the energy to practice them, and when she tries then she will pant like a little puppy.
She will battle problems caused by the last year, but the time to intervene to prevent them has passed.
So we will let her be, and do our best with what we have learned.
She will not be pink, and she will always be happier on the days she had oxygen the night before.
But she has two brown sisters, so being a little dusky will help her blend in.
And she is alive.
That’s the most important thing.
Maybe she just needs to be one: playing in the dirt, keeping up with bigger siblings, and dumping bowls of oatmeal on her head.
I might still be too afraid to take her to the splash pad, though, because I don’t know how to add thickener to water spraying out of the ground.
But otherwise, this is where we are at, and she is trying, and we are proud of her.
And so it is, and we will move forward through the second year in faith, hoping our best gets better, and praying that her airway keeps growing.
That’s good news, that her airway is growing. There is hope there, even with the mantle of the battle being on her shoulders. Breathe, baby. Breathe.
Genesis 2:7 makes her a real girl, no matter how tiny: “And the Lord God formed a man of the dust of the ground, and breathed into his nostrils the breath of life; and man became a living soul.”
Go, baby, go. Go and live.