Friday, July 24, 2015

Pam Recap

Sorry for the lack of midweek posting....some things got the best of my brain and I just couldn't bring myself to open the blog.  There's some confusion with our insurance and Isaiah's care this past week...and once things are done and settled I'll likely share what happened (if that's legally allowed), but for now, let's keep it vague so I don't go into a panic attack...

This is Isaiah's "Mom, can I have a ball or maybe eight of them?" face.

Good thing this cute kid is in our lives to distract us from our worries.  

We're home from DuPont. We got home Wednesday night after what was a wonderful trip in regards to Isaiah.  Truly, Isaiah was a rockstar.

Isaiah tried to take over the magic show at the McDonald House on Tuesday night.

He was pushing himself everywhere he could...we were able to visit the NICU and see some of his old doctors and nurses.  He wheeled laps around Day Medicine while his pamidronate was flowing.  He was all over the place at the McDonald House, and it was thrilling to have people who have seen him in the past tell us how impressed they were with his progress.

He even showed off for Dr B and his PA....lifting his head like this...

and um.....even showed them how he is for real trying to crawl.  ISAIAH is trying to crawl!

The last two months, Isaiah has made leaps and bounds...but the most have been within the last two weeks that he's had his wheelchair.  He's talking more.  He's moving more.  He's pushing himself physically beyond his own boundaries.  It's amazing.

Dr B seemed pretty darn impressed with the point that he mentioned a magic word...RODS.

We think maybe maybe maybe it's time to start talking RODS.  For those that are reading this and thinking "uuuuh, what does that mean?", well, you know how the bones in Isaiah's legs are bowed?  Dr K will at some point place rods in those bones, straightening them and giving him something stable to (someday) possibly walk on if Isaiah is interested in that.  They are also basically internal splints, helping to avoid more severe fractures that can occur with extra movement/weight bearing.

Dr B has signed Isaiah up for a September OI Clinic appointment. OI Clinic is basically a cluster of appointments with Dr B, Isaiah's geneticist, Dr K, his orthopedic surgeon, and a PT at Dupont.  It's there that we will talk about rodding surgery, Isaiah's progress, and more (well, I don't know because it'll be our first clinic! lol).

I'm hesitant to get too excited.  Partly because of the issues we had this week with insurance, and partly because I don't know if Dr K is really ready to talk rods yet....

but gosh, RODS! AHHH! I won't lie, when I see Isaiah start to try to crawl, I hold my breath, worrying about the possibility of a fracture...

But I suck it up and help him in ways his PT has shown me...because CRAWLING IS AWESOME.  I make sure his legs are inward so his hips are lined up correctly, and we're working on helping him get that darn right arm out from under his body....his pushing his wheelchair should help with that too.  It'll really help him to build his upper body muscles, which will help him to hopefully lift his upper body before we know it.

Guys, there was a time I didn't think I'd ever be able to talk about Isaiah crawling.  And lifting himself with such strength!  Ahhhh!  He is a determined little guy, and we are very blessed parents.

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