Monday, November 15, 2010

The Challenge

The smooth sailing has already come to an end once again. Remember last Friday was supposed to be one of the many routine surgery days that we have at least once every six months for Lauren, well it turned out to be anything but routine.

There has been regression in speech, academics, emotional behavior, balance, and ability to do everyday tasks that had been mastered long ago for Lauren. Since Dad, I, and the teacher are all seeing the same thing I had brought it to the attention of the pediatrician at her pre-op appointment. The pediatrician and the physical medicine physician were both quite concerned because people who have Traumatic Brain Injuries (TBI) like the one she has do not tend to regress unless there is some neurological issue causing problems.

Apparently the two physicians had spoken on the phone while we were driving to the appointment on Friday so when we got there her medical team was ready to have a quick discussion. It was decided that while she was sedated for her other procedure they would also do a CAT scan to see if they could figure out what is going on. There were several areas of concern so further testing will need to be completed. All of the things they are considering will make her medical care more involved.

I got the job of trying to get imaging from CAT scans and MRI`s from before she was adopted, at the time she was injured. This involves working with a major medical center thousands of miles away, going through a mountain of records, and of course dealing with the issue of an adopted child while doing it. Thankfully I have a computer and I can operate it effectively when needed. After talking to four different people I think I finally got in touch with the right one, the one who can actually do something and actually knew exactly what I was talking about. It was a challenge, but I got it done. Thankfully we did not have to go to court to get this done. The staff at the hospital we are working with now had told me that in the situation where the adoption record is sealed it is not uncommon to have to get the file opened to get this information.

Now my daughter who has survived a massive TBI and has reached goals no one though possible will have to deal with another medical issue. This baby was born normal, healthy, with parents who are very intelligent, just imagine the potential destroyed because someone was angry at a new born baby! As her mom it is a challenge every day to accept things the way they are and forget about what should have been.

2 comments:

  1. I am similarly challenged with GB's FASD- the damage is more obvious as she falls further and further behind her peers.

    It isn't fair that Lauren has more to deal with. I will keep her in my prayers.

    ReplyDelete
  2. Oh Cyndi - I will hold you all close in my thoughts... prayers for Lauren that they can find ways to help her.

    ReplyDelete