Appointments, appointments, and more appointments!

So, Julia got her hip X ray done yesterday while at OT and SLT. The tech could not read it, but forwarded it on to Dr Gallagher, so hopefully I will hear back soon - with hopefully good news. I am NOT excited about surgery on Julia's leg.....praying it won't go this route.

The Botox under anesthesia is scheduled for next Thursday morning. They will be doing two to three injections to see if they can loosen up the tight muscles in her leg - and then we will do some pretty intensive PT while the shots are working (about three months) to try to correct her leg and foot position. If this fails.....surgery.

We have an appt friday april 8th for a refitting of her brace for her left foot. The Dr recommended a low brace - just to the ankle, rather than the tall one she has been using. Hope we don't have to go through the 100 pairs of shoes ordeal to try to find one to fit over the brace! That is not real fun. I always pictured Julia and I shoe shopping together, but it turns into a nightmare.....crying, fussing, frustrated - BOTH of us! Haha.

I got a call back from the scheduler for the neuro-psychology department at Children's Rehab. The Dr is out of town until next week, and there is usually a two to three week waiting period to get an appt - so that will be a while. The appt is a 12 hour evaluation. After explaining Julia's situation, the scheduler said we would probably break it into two days for everyone's sanity. So, that's two more "vacation" days I will have to take off from work.

Julia also has a neurology follow up on May 25th. Just a recheck. We may discuss medications to help with attention span, but Dr Gallagher said with brain injuries like Julia's, they don't always work, and may make her more prone to seizures. If this is the case, then, we will not go this route. It was just my thought that if she could concentrate on something for more than 30 seconds, she may be able to learn better. We will see what Dr Parsons thinks in May. We discussed it back in November,and she said that before we considered that, that we try her at the special needs school that I have enrolled her in - she has been there 6 months now, and is somewhat better, but definately not as focused as we all hoped she would get.

I spoke with my boss about all of these appts and evaluations that have been occurring lately - as i have had to take many days "off" for these things. I asked him to let me know if my job was in jeopardy - as all of my "personal" issues are definately affecting my ability to work.....he said I was fine....not to worry about that......and that if it got to that point he would let me know well ahead of time. I am starting to realize why so many mom's of special needs kids do not work full time, or work at all - so many things to do and only so many hours in a day. I hope that someday I am able to go to part time work, but don't see that happening anytime soon. Just trying to schedule all these things on my days off, or just trying to take 1/2 days off to accomplish all this stuff. It is exhausting, but hopefully will be rewarding one day. I love that baby girl.

Susan