A Week in (Pre) Review

The next two weeks are going to be busy ones for the girls and I. Here's the run down:
Tues - Physical Therapy eval for Abby
Wed - Speech eval for both girls 10am and Feeding therapy at 11:15 (both at home)
Thurs - Play therapy (home)
Fri - Pulmonary appt. for both and follow-up chest X-ray for Natalie

next Mon - ear appt for both with hearing tests
Tues - Two year appt. with ped
Wed - regular feeding therapy
Thurs - regular play therapy

To be honest, the appointment I am most concerned about is the first one - the PT eval. One of the things they are evaluating is whether or not Abby needs braces on her legs to address the fact that she has starting turning her foot in when she runs or walks fast. It's not an aesthetics thing for me at all. It's more the crashing and burning of a fantasy.

The reality has been that, so far, the girls have largely escaped any real consequences and affects of their prematurity. Of course, feeding has been an issue, but even that respect, we have managed to avoid GI's and g-tubes. And, despite their very small size, their cognitive development seems to have remained unaffected.

Recently, however, we have started seeing gaps in our nearly perfect situation. When we started with their developmental play therapy, I actually thought they really didn't need it, but I figured it couldn't hurt and every little bit helps. In the past few months, however, I have seen areas in which they struggle. Our therapist, Elizabeth, (whom I adore) has also mentioned areas in which they seem behind. She has also commented on some currently minor sensory integration adaptations, such as Abby often sticking her tongue out while playing or concentrating on something (and unfortunately often when we are trying to get a picture:-)). I had previously worked with a child with Sensory Integration Disorder, have read some literature on the subject and have a few issues of my own, so I had been on the lookout for systems. I had already noticed that both dislike the feel of the grass on their feet (especially Abby) and also dislike it when their hands get dirty (again, especially Abby). Generally, these aren't terribly unusual, but every little thing makes me worry about more problems down the line.

Their recent developmental evals at SICC were also not what I expected. They tested at their adjusted age for everything but speech. Of course, in general, that's amazing for 26 week preemies. But, I was still surprised. I really expected them to do better in some areas. Maybe that's just my mommy pride, but they really do seem on track for their actual age in many areas. Again, I think that some things weren't tested, like receptive language, but, even I can admit there were things they struggled with. On the same day came the initial PT eval that suggested Abby needed to see PT for the braces eval. That was a bit of a surprise. Not the need for PT, or even that she was turning her foot in (I actually asked them to look at her and pointed it out), but the word "braces" kind-of threw me for a loop.

Again, it's not the physical presence of the braces, but the fact that I can envision Abby's response to them. I'm just so afraid she's going to cry and cry and try to take them off. And I won't be able to help her. I'll have to make her wear them while she cries and calls my name. The idea just breaks my heart.

Maybe I'm making it out to be worse than it is. I hope so. It just makes me sad that I will have to make Abby sad. Other than periodic immunizations and a chest x-ray, we haven't had to really put the girls through anything that bad since the ng tubes. And, that experience was just awful.

The other appointments are to address some other possible issues. Pulmonary is to test their lung capacity and see if they have residual lung disease. The ear appointments are to check their hearing (not worried about that) and to see if they are holding fluid in their ears and might need tubes. Their reoccurring ear infections necessitated that appointment. I'm not loving the idea of tubes either, but for some reason I'm feeling like their ears will be okay.

I feel a little guilty for worrying about what are really pretty minor issues. I really should be just overjoyed and grateful for how healthy they are. And I am. It's just that now our fantasy world has collided with reality and it's not nearly as fun.