Tuesday, May 6, 2014

Free time!

I apologize for my slacking off when it comes to posting.  I am finally on summer break from school!  It's been a very tough semester.  I actually failed a class and then got a B in my other class.  I don't approve of either, but I've had quite a bit to adjust to.  I didn't even realize that it was stress until the semester was almost over.  I'm praying this doesn't kill my honor society status!

If we were the type to give up, we would have given up on growth hormone quite a while ago.  However, we stuck with it and she finally got it!  It has been about 2.5 weeks.  The down side is that she has had a major headache from it, so we agreed to skip a few days to see if the headache would go away.  We are hoping that when she re-starts it, her doctor will approve a lower dose, and then gradually move back up.  We have already seen some of the benefits:  improved sleep, for one thing.  It is also supposed to strengthen bones, which is wonderful considering that all of the years of prednisone can cause osteoporosis and brittle bones.  I know that this is the right step; we just have to find the right mix here.

She has another sinus infection.  If you read the last post, you may recall that we had a runaround trying to get her into the ENT for a swab and suction.  She ended up getting better spontaneously on her own before we could get the authorization.  Now she's sick again.  She just had 30 days on Augmentin.  She was sick again after a few days.  Now she is on Clindamyacin again.  I have another call into the ENT.

The other bit of Emily news is that, while we were at our pediatrician's office, she tells me that her throat is "bulging" again.  Apparently it is difficult for her to speak, and to eat.  The eating is hampered, but she also has too much reflux coming up, too.  None of the usual meds seem to be helping, so I emailed our doctor to let them know in advance.  This is a hospital week.  It should be interesting.  They are supposed to test her cortisol levels to see if we can start dropping hydrocortisone, and now they will also run an upper GI to see what is up with her throat.  Also, she has been telling me this week that her muscles are bugging her.  That could be from the growth hormone (we are hoping!), but it may not be. The last two visits I noted that her muscle enzymes were elevated.  Not a huge amount, but definitely increased.  I am hoping this will be just a fluke.

Zach is doing pretty well.  Now that he's had a steady supply of Enbrel he is doing better most days.  He's had a few days with a lot of back pain, a couple with knee pain, but overall he is good.

We are going to try the Paleo diet.  I am definitely going to try the Whole 30 on the advice of two friends.  While Emily is one of the pickiest kids in the world, and she would rather starve than eat broccoli, I am hoping that if I lead by example, they will follow.  I really feel like this could help, but if I push, then I have no chance.  I am not looking for a cure or a miracle; I'm not setting us up for a fall.  However, I see correlations with food myself.  I know that soda makes me more tired, it breaks me out, and I feel yuck.  I recently realized that is the same for most sugar.  I feel worse when I eat certain things.  I had chips this weekend and now I hurt everywhere.  I'm almost positive it's from the chips.  So, perhaps if we cut all of that out, things will be better.  The essential oils have been amazing, too!  There is an oil for everything!  Our favorite is doTERRA's Deep Blue.  Especially when we use a friend's concoction and add more wintergreen and frankincense to it.  Amazing!  Now I see that many of my migraines were from my neck.  It's been a fascinating couple of months!

I am hoping for a calm summer since we didn't get to do anything fun last year.  This year I am hoping that we can go out on Friday's to do fun stuff!  After this week...  I will try to post from the hospital when we know more.  Take care!

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