Living Life One Year At A Time

It has been four years since Jenna has been living in the group home. I can’t believe how quickly the time has flown past. I can’t believe how much she has improved over the past four years. Mark and I have gone from wondering every day whether she was going to be alive when we woke up to receiving the official report that she’s thriving. Here are some of the things that she’s dealing with these days:

They have put her on a diet! A DIET, y’all!!  This child who had dropped from 99 pounds down to 72 pounds and was on the brink of death is on a diet! I never thought I’d see the day. She’s eating well (obviously), but I mean eating well! She gets to eat! Her two house mates both have feeding tubes in. They don’t get to know the joy of tasting food! Their food is in the form of liquid poured down a tube directly into their stomachs. Jenna gets to eat. To me, that is a miracle.  Her swallow studies have not been as good as I wish they were. She can’t have liquids at all. Everything has to be thickened so she doesn’t aspirate. But….she can still eat!

They will be cutting her portion sizes down. For a while she had to have Ensure throughout the day because she was so thin and it was the way to get optimal calories into her to help her gain weight. So, she won’t be getting the Ensure anymore. It is so surreal to me that she needs to go on a diet. Like, alternate universe surreal.

One of the other issues she’s been having is spasticity. This is no surprise, though because she has always been flinchy.  She can’t control her muscles very well and her legs twitch a lot. When she’s sick or stressed the jerkiness gets out of control. Always has. So that didn’t come as a surprise that they’re still dealing with that. She’s got a dentist appointment within the next couple of weeks and they’ll have to give her valium before the appointment or her little body will spaz out, making it impossible to check her teeth. Last Christmas time she got the flu and was so miserable that her legs and arms were just flipping all over the place. Her knee came up with such force that it busted her lip open. Nice to see that some things never change, huh?

When she was a young kid she had ear tubes because of continual ear infections. She had them removed when she was about 18. Maybe 17, but still…a few years back. She didn’t have too many troubles with her ears until recently when the infections started up again. Probably within the last two years she’s had recurring ear infections so they put tubes back in. It seems to be helping some, but she still is bothered by her ears on a regular basis.

Those are the highlights of our meeting. Overall, she is doing splendidly! Moreso than I could have ever hoped for! My boss asked me today (right before I left for her IEP) what her life expectancy was. I didn’t know how to answer. All I could say was, “We just take it one year at a time!”

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