Thursday, September 20, 2012


So, here it is... midnight.  This is pretty much the first free-time I've had in a while.  Everything has just been a whirlwind!  I've barely had time for my school work, though I'm learning how to get the kids coordinated enough to be working independently on something simultaneously while I do some of my work.  I have to schedule a couple of their classes on Saturdays after I get home from work.  My weekends are yucky.

We head up to the hospital on Wednesday of next week.  I'm not really sure what to expect.  Right now, depending on the day, sometimes Emily will say the CellCept is working, and other days she says it's not.  I'm inclined to believe that it is because she is eating again, but it's hard for me to say.  She also hasn't been nauseous as often as she was for a while, so I believe that it's helping.  I would love for them to decrease her Prednisone, but I won't hold my breath.  She had labwork done last week.  I'm hoping that will be clear.  The biggest issue with her now is the insomnia.  CellCept says right on their insert that it may cause insomnia, and she is taking it twice daily, so I'm assuming that it the cause.  Well, she's had sleep issues for years, but this is different.  Before she was tired all of the time and she had little to no energy but she wasn't up at all hours of the night.  We were using 3mgs of Melatonin every night, but that doesn't seem to be helping.  She's still up some nights between 2-4 A.M.  Other nights she sleeps very well, but usually even then she doesn't have enough energy.  Today was a good day.  She felt pretty good.  On Tuesday I had to send her back to bed.  She was so loopy- like she had been on something.  She slept most of the day.

Zachary had a plethora of labwork done on Wednesday.  They are re-running the Scleroderma labs, MCTD, Lupus, and even Dermatomyositis labs on him.  I was pretty surprised about that.  They also ordered a regular urine sample, and a 24-hour sample. I can imagine what they're screening for, but I have chosen simply not to think about it until we head up there.  He has bad veins, too.  They tried to draw on him last week but they couldn't find a vein.  This time they found one, but they could only find one in his hand.  He was not thrilled about that! 

On Tuesday we had a consultation with Behavioral Therapy.  When I first heard about the program I thought, well, that's not for us!  But the more I heard about it, the more I realized that it could really be helpful for strategies to help her anxiety.  Right now, even with the port, good luck coming at her with a needle.  It's not good- she flails, and tries to get people to back off, but it needs to get done.  She knows that it won't hurt, but she still has this huge fear that just won't go away.  She is really going to get badly hurt one day, or hurt someone else.  It's just not good.  This should also help with getting Zach more focused, and help Em with her math anxiety, which she is actually doing surprisingly well with at the moment!  Oh, praise the Lord that's working out!  That was one of my biggest fears- that she would be so anxious that I couldn't teach her.   

The homeschooling has actually been fun!  Our biggest problems right now are partially because we didn't get their books until late (Emily's took two weeks after school starting!), and then they both missed a few days.  Em has had a few days where she was just so tired that there was no getting through, Shands days wipe her out, and we had a virus or something go through the house a while back. We have been trying to play catch-up there.  And therapy doesn't help our school work.  I'm really trying to tough it out, hoping that it will get better, but right now we just don't have enough hours in a day.  We have Physical Therapy and Occupational Therapy three days per week.  Tuesday's we have an hour each session, and the other 2 days are half hour sessions.  (The Behavioral Therapist said that she can meet us while Em is in her other sessions so we don't spend even more time there!)  It's hard to get anyone started on school work until ten or so.  Emily is often not awake until after ten, and I'm sorry, but I'm not waking her until she's on a real sleep schedule unless I have to.  We are just getting stuff done when it's suddenly time to go.  By the time we get home it's often evening, and we're working until 8 P.M.  We're in a catch 22 with this.  I see how much stronger she is getting with the additional therapy.  I think that once we are in the swing of things a bit more it won't be an issue.  It's just now that it's been very hard for her.  Maybe if we change her CellCept dose a bit, or something...

Overall, I am really enjoying homeschooling.  We definitely have some things to work on, but every week is getting better, it's going easier.  If I had two healthy children, it would be super easy!  Unfortunately, I don't.  Like my hubby said the other night, "most people seem to have a rule book, but ours changes every day".  Yup, that's pretty true.  We seriously don't know what to expect from one day to the next.  It certainly makes things more interesting!  I will post again after our hospital appointment next week.