Getting into a rhythm…(yeah, right!)

Sure, it sounds good, doesn’t it?   Maybe if I say it enough, “we are getting into a rhythm,” that maybe we will eventually get there…

Hannah is doing really well.  I would say she is about 75% back to where she was pre-hospitalization.   Well, if you separate the desire and ability to play with her toys, she is at about 95%!  Girl LOVES her toys.

Now that we are weaning down the Keppra (finally weaned off her midday dose), we are noticing more choreathetoid movements, especially at night.  We are going to keep an eye on it for the next few days, and if it still gets worse at night, then I’m going to call her neuro and discuss it with her.  We have 3 more weeks before we are off the Keppra, and perhaps this “third line of defense” drug is actually doing a lot more work on her movements than we thought.

Getting Hannah into the Katie Beckett Program so we can get on Medicaid has been a nightmare.  I dropped off the forms about 5 weeks ago.  First, they screwed up by putting the application under MY name and MY social security number.  Then, they sent it to the wrong office and under a different program that Hannah does not qualify for.   Also, all the additional paperwork that we had walked into the “wrong office” that they accepted had disappeared.  A few days ago, I got a call from one of the supervisors who is going to “hand walk” it to the right office and department and put it under Hannah’s info.    We’ll see how that works out.

We are also changing our nursing schedule.   In an effort to become more of a family unit, we are making it so there is less time a nurse is here when the kids are here.   We will have nursing during the day while the kids are in school and after they get home from school so we can have time for homework and playdates, but we will have dinner alone and all together.   So instead of Monday thru Sunday, 12 pm to 8 pm, we are going to go to the following schedule:

• Monday thru Wednesday, 8 am to 6 pm
• Thursday, 12 pm to 8 pm (Hannah has her Cerezyme every other Thursday morning)
• Friday, 8 am to 8 pm
• Saturday, 3 pm to 9 pm
• Sunday, no nurse

As for us?  House in Texas still is on the market, Daddy is still unemployed, finances are stressful, counting the days until school starts because the kids are bored and at each other’s throats…. but we are making it through!