Friday, June 14, 2013

Therapy, teeth & injuries....oh my!

Our first week of hyperbarics went amazingly well.  Expect the worst, hope for the best.....that's kind my approach to new and potentially scary things for Noodle.  I arm myself with everything I can that has the potential to soothe her and we jump in. 

Day one was a little rocky, but overall so much better than I expected.  Noodle got fitted for her hood and tolerated getting into it and into the chamber with me.  When we started going up to pressure, she got pretty upset.  It was challenging to keep her from head-banging & thrashing around a lot, but with lots of singing and squeezes, she calmed once we made it up to pressure and settled in.  For the next hour she vacillated between happy/content with a few outbursts of agitation, only becoming very upset again when we depressurized.  She was thrilled to have the hood taken off.  For me, the experience was fine.  I didn't really have any time to think about being trapped in that tiny space with no way to get out in a hurry or all of the things that could potentially go wrong since all of my energy and focus was on keeping Noodle calm and happy.  My only real complaint - the God, the heat - it has to be well over 100 degrees in there!  Since Noodle doesn't thermoregulate, it is a bit of a concern, but I know know to strip her down to just a light one-piece dress, no pants and as long as she's calm she's okay.  We keep the lights off to help cut down on the heat as well. 

Day two was great!  Noodle was in a drug induced stupor sleeping when we got there and we managed to get her into her hood and into the chamber without waking her!!  She slept the entire time!  I may or may not have taken a short nap myself - I'll never tell, but judging by the Albert Einstein hairdo I had when I emerged, it probably happened.

Day three was absolutely incredible.  There was a small bit of fussing with the hood, but once we got into the chamber, Noodle just laid back and this amazing sense of peace came over her.  Those who know her really well know that she is not the type to just sit and take it all in.  She's kind of "on guard" all the time.  She's tense and unless she's in a deep sleep, she's always moving, fidgeting, "talking," etc.  But Wednesday, she was just lying there and her whole body felt relaxed.  Times like that I wish so much she could tell me what she was feeling and thinking.  It was as if she knew she was going to feel good and was just waiting for it.  When our dive was over, she was mad - really mad!  She did NOT want to get out of that chamber!  I'm so excited to see what next week brings!

In other news, all four kids visited the dentist this week and we had four perfect reports!  How amazing is that?!?!  We are so incredibly blessed on the dental front, especially considering that 2 kids had no dental care for their first 5 years, 1 kid had failure to thrive and 1 kid is tube fed.  All 4 should have some sort of dental problems, but so far so good.

The big kids are loving their summer programs so far.  Spare time is filled with ball playing, water fights, and of course - injuries!  Boys - I swear, they'll have developed a complete second skin before they hit adolescence.  Noodle is spending most of her spare time at therapy and Esen is also doing extra OT and PT.  It's been a wild start to the summer!

Wednesday, June 5, 2013

Let the Madness Begin.....


The kids have been counting the days.

I've been counting the days.

It seems like I have a ton of laundry with school clothes and play clothes.

I'm over it - school, that is.  I've been pretty checked out for a while now.  Not the best "school mom" this past month or so.  Apparently, that anticipation for summer break never really goes away as you age.

I would love for someone to come and do all my laundry.

Unfortunately, summer isn't going to be a super-relaxing time for everyone.  The 'big kids' had big dreams of lounging around at home, playing in their little pool, riding bikes and having camp outs every night.  Unfortunately, I, being the big bubble-burster informed them that they would, indeed, be attending Clubhouse and Daycare on the weekdays.

I will likely do laundry.

We are, instead of staying at home to play all day, embarking on an exciting new journey. Next Monday, thanks to the outpouring of love and support of friends, family, & perfect strangers, Noodle begins her Hyperbaric Treatment at Wisconsin Integrative Hyperbaric Center.  We are so excited about this opportunity and, as with any new treatment, are approaching it with guarded optimism.  Many children have experienced amazing outcomes.  Our greatest hope for her is and always has been comfort and happiness.  If we can achieve that, we have won!  If, by some miracle, this treatment helps her to progress with skills and make gains, well then that is a huge bonus.  Along with her hyperbarics, we'll be doing added PT, OT and cranial sacral therapy to try and get the maximum benefits.  It will be pretty intense few months.

Esen will also amp up PT and OT this summer and all of the kids will have various medical appointments to get out of the way. 
July will bring three weeks of Summer School for all four kids and the first time riding the school bus for Noodle!  Another very exciting milestone. 

More school clothing - more laundry.

Kevin and I are trying to carve out some time here and there to work on some home projects. 

We do laundry - a lot of laundry.

Weekends are low-key and we try to let the kids just be free to do whatever they wish.  Lots of fort-building, water fights, 'camping,' and general silliness. 

Did I mention the laundry?

Happy Summer Everyone!!