Health update

I've been wanting to write about S's health for a while now, but want to let you know that she is overall, doing VERY well. As bad as this may all sound, she is growing and thriving but she does have some kinks to work out.

Currently, S has plagiocephaly, torticollis, and gastric reflux. She has some feeding issues (due to reflux) and this is affecting her weight gain. Currently she's only gaining about 1/2 the weight she should. (But she started out skinny, got fat, and is on her way back to skinny! Like Mommy!)

Here's the scoop on each one. Plagiocephaly is an abnormally shaped head. My family doesn't believe that it is a problem, but we'll see what the neurosurgeon says on Friday. Her face is a little asymmetrical (but is MUCH better than it was) and her ears are not aligned. This was caused by her prematurity (they think), but I am inclined to think it was probably related to her neck condition or the fact that she had to sit up and sleep sitting up for so long due to her reflux.

The treatment for this condition at this stage of the game is a corrective helmet. I'll keep you posted about what the doc says on Friday. She also has a squinty eye that is slightly crossed, but we have to fix the head and neck first.

Torticollis is a muscular problem with the neck muscles on one side. It causes a head tilt and can also lead to plagiocephaly. This is is usually congenital and is probably due to S's breech position. She is in physical therapy for this, but the therapist and I agree that it isn't really a big deal anymore. We do stretches and other floor activities. Her PT thinks her eye problem might have made this worst too.

Gastro Reflux has been a problem since S first came home. It is so much better now. She spent about 4 months sitting up and sleeping in a Tucker Sling and is on medication. Poor thing. She arches her back and cries when the acid comes back up.

She also sees a nephrologist (kidney doc) to check for any residual damage due to her urinary tract infection back in Sept. That infection put her in the hospital for 7 days, but atleast we met a cool doc out of it.

RSV is a respiratory virus which is similar to the common cold. In preemies it can be worse and require hospitalization, so S has been getting monthly shots from her pulmonologist (lung doc) to help prevent it. We try to keep heAmen for insurance! Without it, we'd be paying over $4,000 a shot. YUCK!

So if you are counting, S has a nephrologist, pulmonologist, neurosurgeon, gastroenterologist, a physical therapist, and a pediatrician. Should her neurosurgeon recommend a helmet, we'll probably will add an orthotist and an opthalmologists to the list. That's 6 total, maybe 8.

We have an average of 2 doctor's appts per week.

In talks with my other stay at home mommy friends, it occured to me that most kids don't have doc appointments like this. She's our first and our only and I don't know anything different. And I love her, minor imperfections and all.

And they really are minor. We are so blessed!

1 comment:

JO said...

I have just read your post about your daughter and all of the appointments you have to go to. I couldn't believe there was someone else out there that is going through a simular journey to us.
We have a 9 month old son who is currently under 5 differnet doctors, and soon to be 6. We are constantly at the hospital for all of his various appointments.
Last week we went to a clinic about his head shape and he is going to have a helmet to reshape his head. We are going back in 2 weeks for his first fitting and I am very nervous!
I hope everything goes well with all your daughters appointments.