“People Look Away from Her. What Matters Isn’t the Diagnosis, but My Daughter’s Life, Says Her Mother.”

So my daughter Finley.

She’s 11 months old.

She has Trichocon syndrome, especially basically underdeveloped facial bones.

So in the womb her facial bones didn’t form completely.

So that’s why she’s missing her cheekbones, her ears, and then she has a small lower jaw.

If we can distract her lower jaw far enough and get it out to like what would be her normal, her tongue will be able to fall into place and not obstruct this airway right here, which will let her potentially breathe out of her mouth, eat from her mouth, make noises.

Right now she can’t make noises because there’s not enough room to pass the air over her vocal cords and out of her mouth.

Not having to worry about the finances was the only way we were able to get this done.

So if we would have had to get a hotel for, you know, two weeks or a week, etcetera- we wouldn’t have been able to do it.

We would have had to just pass on it and just kind of see what our options were down the road.

I’ve never been away from findlay since the day she came home, so it was a lot to be away from her, and so just being across the street and not having to like drive far in the snow or any of those kind of things was awesome.

You just feel accepted and welcomed and at home, so that feels really good.

It made taking her over there for her surgery a lot easier for me.

Without the support and the donations we wouldn’t be here, and i think i speak for many other people like they make this happen.

They’re the reason that Finley got her surgery.

Without them, we wouldn’t have been able to do this.

You know the the warm meals.

That was incredible.

Because i’m from Florida, i don’t do snow.

So, like when it started snowing during our stay here, i wouldn’t have been able to get myself out to get food.

And then, like when i brought my daughter back here, she wasn’t ready to go in the car.

We, i don’t know how it would offend myself.

So, like the warm meals.

You know, that was incredible because it helped me stay fed and take care of my daughter.

My stroller’s massive, because it carries all of her medical equipment around with us

And i just couldn’t fit it, and so we didn’t know how to get her from place to place.

Once we got here and realized: well, you know, it is across the street, but how do we get a baby over there?

That was awesome.

I mean not having to get out in the snow

And, you know, go spend more money that we don’t really have- and on something that we already have at home.

It was incredible, um, and that you know, not only a stroller, a playpen was provided to us to help her sleep, because i couldn’t fit that either.

A bouncer.

When she got back over from her surgery.

You know she wanted you to hold her all day, and it’s just a lot, because she has, you know, the fancy head gear right now.

So the bouncer to allow her to lay down and relax.

We couldn’t get her to sleep all day yesterday, and that bouncer is what got her to sleep.

So that was incredible.

All of that it’s just incredible to have it and not have to worry about bringing it with you or having to spend money that you really don’t have on obtaining a new one.

Hey, you’re a bird, i’m a bird.

We woke up the morning of and there was a stuffed animal at our door for her, and that was just sweet, because i know, like.

It’s something that i’ll remember as comforting and later on down the road i can tell her about, like where it came from and how she got it, and things like that.

Now her jaw has already come out.

Some that she is passing sounds over her.

You know her trach and her vocal cords and she’s making duck calls.

So that’s so exciting.

It still doesn’t feel real.

Yet in the hospital, you know, they have the wires that are given her heart rate and her oxygen.

So when she was attached to all of those things, you know i couldn’t love on her, i couldn’t be there for her, i couldn’t make her feel better.

So getting the opportunity to unattach those wires and bring her over here where she could be loved, on where she can sleep, where her mom is, i think she was, you know, nervous.

She didn’t want to let herself kind of relax and heal because she didn’t want to be where she was.

I mean who does.

But so bringing her here she’s blossomed like her swelling has gone down.

Her personality is popping back up, like just all great things versus being in that hospital room.

I mean, technically she was supposed to stay in the Picu for a whole week, but since we have such a comfortable environment here, we were allowed to bring her over here to rest and recover with us until her follow-up on Wednesday, since we were so close by to the hospital.

I just want to say thank you, thank you to each person that you know donated, provided a meal, provided the soap in our room.

Um just all of that, like it, helps us to put all of our support and our minds on.

You know our children and their well-being, and you know it wouldn’t be possible without all of those things you.

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