I finally cut Charlie's hair! We just gave her bangs and evened out the back a bit. It's still past her shoulders. She's also getting some *beautiful* blond highlights in it as well (natural ones of course!). Her hair is still a bit wild. I'm hoping it eventually tames down a bit. She's cute no matter what just...it's really hard to control. LOL
And Charlie got to go swimming in the big pool! My mom has been bugging me for weeks to take her in. The pool was finally warm enough for her last Sunday. Here she is, getting ready to go in. I forgot to bring her bathing suit, not realizing we'd actually be taking her in! So she's just in a diaper cover.
"Yes I love it!"
I got a little bored one day and made her some bell socks. She thinks they're pretty neat!
So it's been like 3 weeks since her procedure. I'm a little sad to say that she did end up with a little more secretions. We still have to suction her pretty much all the time. She DOES have less though. It's just what she does have, she still has no clue what to do with it, so it all falls back in her airway. I'd still say there's a 50% decrease even though we still suction 20-30 times a day. She's peeing 5-6 times a day (up from 2-3). Her suction machine usually has 100-150 in it a day (vs 200-300). She's only wetting 2-3 rags a day (used to be 6-8).
SHE IS OFF THE OXYGEN!
Well, for the most part. She still has a bad day here and there, but she's breathing well enough that she can stay in the 90's most of the time. So the procedure was definitely still worth it. We go back in about 2 months to have an ultrasound done to see how everything healed up. If he sees her and thinks she's could benefit from a second go-around, I'd totally let them. If we could get another 25% reduction, it would be worth it.
In the meantime, I need to teach her to spit better so she can get it out herself and not let it fall in her airway as much. She's been pretty good about that, but I think since she has less to deal with now, she doesn't bother to spit it out. I don't think she cares if she has to be suctioned. We'll work on it anyway though.
We have a home visit from Help Me Grow tomorrow to decide what to do about preschool. She's almost 3 years old! My gut says to keep her home and just have them send a teacher out. But Charlie loves other kids soooo much! Too bad they have so many germs. LOL
4 comments:
I love her hair! Looks like she had a great time in the pool!
If it wasn't for the germ aspect, I would say to send her to school. Since she needs frequent suctioning, she would need an aide/nurse in the class who is trained to do it.
My son's first year in preschool there was a child who had her own 1-on-1 aide or nurse ( she had multiple disabilities including CP and a cochlear implant). Not sure if the school, family or medicaid paid, but I do feel like the whole class benefited from having an extra adult in the room. I saw the aide(?)work with small groups of kids that her charge was playing with.
Maybe there is a way to send her to school when it is not flu/cold season, and have a teacher come to the house when it is. Or maybe they can send a note home letting the parents know that there is a medically fragile child in the class and it is very important to keep kids with colds home.
you could do a compromise... have a teacher sent out this year... and send her to school next year... giving you time to make sure you get everything you need for her for the year she goes.
I might see if they can do a "partial homebound" situation- where she has homebound when she's sick (or there's a lot of viruses going around) and goes to preschool when she's well.
I would imagine she would be in self contained, with a 1:1 nursing aide? The biggest part of preschool germs is little kids having no sense of hygiene, but I am assuming she will spend most of her day with other children who are high needs, and they won't be exchanging contaminated toys, kwim?
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