Thursday, June 9, 2011

A Quick Update

The day after Autumn got the cast on her arm, we headed for the beach.  That was actually the only reason that our pediatrician went ahead and sent Autumn to the orthopedic doctor.  She knew we were about to be gone for a week and didn't want us to have to deal with anything while we were gone.

Our week in Gulf Shores was really the best we could have hoped for.  Autumn's cast was waterproof, so she could get in the pool and the ocean.  (Salt water was fine, but no lakes, rivers, etc.)  We just had to run water through it each time we finished swimming.  She handled the whole one arm thing like a trooper.  She's used to body parts not always working like they should, and she's very good at adapting.  I always say that she's very resourceful.

We also restarted the leukovorin while we were gone.  The low dose is not affecting her as badly as the original doses, so we're praying we will see positive results after she's been on it for a little while.  I'm also looking for a CoQ10 that I can buy at the high dose she needs and not have to spend a small fortune every month.  The brand the doctor in Atlanta recommended was going to cost over $300 a month.  I've found another brand that we can get for around $100/month, but I'm still hoping to do better.  It’s considered a supplement, so insurance won’t cover it. 

She's not been walking quite as well this past week.  Don't know if it's the new medicine or if she just over-exerted herself swimming every day.  With Mito, there is a fine line.  You want to keep them active so they don't lose function.  At the same time, you don't want to work them too hard or their body just can't handle it.  It's so bad that she fell down the last 3-4 front porch steps yesterday.  Luckily, she was fine.  I figured they'd really flag us at the hospital if she ended up with two casts at the same time.  Oh my!

Good news!  Today was the follow-up for her arm, and THE CAST IS GONE.  Horray!  Horray!  The doctor said the type of fracture she had was a minor one and tends to heal quickly.  We’ll just hope for no more accidents.

Silas enjoyed the beach as well.  He often tires very easily and won't swim more than an hour or so, but this year, he really had a blast.  The activity and heat made his stomach hurt more than it has been, and he even threw up in the pool one day :-(  However, as a whole, things went well.

When we returned, we had received a letter from the GI doctor in South Carolina.  Silas' appointment is just two weeks away.  I hope you will be praying with us about this one.  We need definite direction and someone who can help us long term.

I need to post some pictures, but I'll have to do that later.  Have a great week!


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