Nov 27, 2011

In summary

Yes, I've been silent for the past 12 days.  Thanks to all of you who checked in on us to see if we're doing OK.  Yes, we're just crazy busy (even for us). 

In summary ... Zoe is now 1 month post surgery and I would love to post pictures but she is getting very private about her owies and I am going to respect that.  I have pictures that maybe she'll let me post some day in the future but for now, I'm not going to break that.  How is she doing?  Physically fairly well.  The hip scar look amazing and she has no pain.  She is off all restrictions for activity. 

Her mouth?  The stitches are still in.  They shold be out by now but are not.  We are supposed to help work them out by brushing and rubbing but they are not budging.  She is also not allowed to eat in the front part of her mouth ... but that's fine as she has no teeth there anywhere and never does.  She is not able to eat sharp foods (chips,crackers, etc) but that's about it. 

Emotionally?  This has been the hardest part for her by far.  She is struggling with the whole thing and I'm not sure what made this time different.  We're spending a lot of time talking. 

Manny ... Since his broviac - all is going well.  He's getting weekly dressing changes and weekly labs.  So far, so good.  He did get a pretty bad chest cold last week and he still has a lingering cough but we have all the equipment at home that they have at the hospital so we are just nursing him back to health at home. 

Meanwhile, I've talked to some fellow moms of kids with Merosin Deficient Congenital Muscular Dystrophy and even some docs ... they are in agreement, there is more going on with Manny than just the Merosin. So it was recommended we send his stuff to NIH in Bethesda, MD.  For the past 2 weeks, I've been collecting MRIs, reports, genetic testing results, the muscle biopsy slides, etc etc from numerous docs and getting them shipped to Maryland. 

Long story short, they all arrived and the doc looked at them.  His initial reaction is that he does indeed have Merosin (we weren't doubting that).  But he also has some very atypical things going on in conjunction and he would like to see us.  Monday I'll making the schedule of when we can fly out there.  (Probably January.)  Looking forward to that meeting... it will be the first time we've ever seen a doctor who has ever even SEEN another Merosin kid!

Thanksgiving.  We had a wonderful time here.  I always cook for an army because if I have to work that hard on a meal, it better last for several other meals!  We have my parents, sister, nephew and several others who didn't have a place to go.  It was very nice. 

Thursday night, we gathered all our stuff for our yearly camping trip with our church.  Yes, that's right. 

Friday morning we packed up the van and headed out to the campsite.  And before you all freak out, Manny didn't sleep out at camping.  Dan came home with him at night and hung out with us during the day.  But the rest of us were there having hotdogs and making smores, getting filthy, finding strange animals, play games, etc..  My kids LOVE being outdoors and could be out 24/7.  

We always go to the same group campsite and for the first time, we found a snake.  One person thought it was poisonous.  (I never saw it, thought I'd have nightmares if I did.)  But they gathered it up and drove it about a mile away and released him there.  We heard owls arguing.  We laughed.  We got filthy.   The weather was 80 in the day and 55-60 at night.  Perfect if you ask me. 

A couple of things went wrong ... Saturday night, Zoe said her finger hurt.  It was a tiny bit red like she had a bite of some kind but she didn't remember being bit.  Now here it is 24 hours later and her finger is quite swollen and painful.  I'll have to put a call into the Doc tomorrow if it doesn't start to look better. 

Oh, just thought of one more thing ... you know those glow in the dark necklaces?  One broke and sprayed right into Lukey's eye!  It's toxic I'm sure so all the ladies jumped up and immediately started flushing it out.  Didn't take too long before he was good as new.  (Who knew!)  Funny, he said, "At least it was a blue one because I have blue eyes so it matches." 

And my tooth completely broke.  The one right behind my eye tooth so it's completely visible.  It's not a partial break or a small thing ... the whole thing is GONE.  Yes, it was a bad tooth and I should have taken care of it a long time ago but didn't have that kind of money.  They were talking THOUSANDS of dollas (5 or so) just to fix this one tooth so I chanced it.  Now I have this huge gaping hole and no dentist.  Guess I'll be working on that tomorrow.  And in the meantime, not talking or smiling much.  (Yeah, right.)  And still don't have a clue how I'll pay for it but don't really think I should go without a tooth.  One in the back? One on the bottom?  Who cares! But this is right in the front.  (sigh)

The next couple of weeks?  Tons and tons of doctor appointments.  I'll try to do better about keeping everyone up to date on the happenings.  But I can't promise.  I get to living life ... and I feel like all I'm doing is spinning plates, just trying not to let one fall. 

Hope everyone had a blessed Thanksgiving!  And may you have something to be thankful for, every day of the year. 

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