Thursday, May 17, 2012

For once, it's not Charlie...

Charlie has been doing so great since she's gotten her trach.  I never imagined she'd adjust so quickly and easily!  There have been quite a few times she's started having autonomic symptoms that I know could have easily escalated into a full-blown storm, but we catch it, put her on the vent, and within minutes her face flushing goes away and her heart rate slows down 20-30 bpm.  It's like magic! LOL

So for the first time in....I don't know how long, my worry is not on Charlie.  Adrian and I are the ones having issues!  I've been having some scary GI symptoms.  Thank goodness I have medicaid now.  I was really worried I had colon cancer.  I had an aunt who died very young from it.  But alas, the colonoscopy only showed ulcers. *phew*  STILL, wtf?  So we're waiting on the biopsies to get back, but I likely have ulcerative colitis or Crohn's.  Wonderful.  And I can't even pinpoint what foods irritate me.  I've just cut out anything that doesn't digest easily, like whole nuts and seeds, corn, etc.  That's about all I CAN do at this point, I think.  I have an endoscopy at the end of the month and from there we'll figure out what meds I need to be on and what sort of diet plan might be best to follow.

In all of this I keep thinking this is so backasswards.  I eat healthier than most people!  But "they" say it's not caused by diet (although certain foods can irritate it).  It's often genetic.  Thanks, mom and dad, for the super genes!  My little sister has it too, so at least I have someone to bug night and day with questions.

Anyhoo, Adrian now goes to PT weekly for his toe-walking, which just seemed to be getting worse over the past few months (I thought he'd outgrow it).  I also called psychology about his anxiety, who referred us to psychiatry, who referred us to the autism clinic.  Excellent.  Since when do I have TWO special needs kids!?  Not that he necessarily has ASD of course, they are hoping to better understand his anxiety through this.  So in PT, we find out he's overall very uncoordinated.  Aside from the toe-walking, he also pronates.  If he doesn't make significant progress in the next 4-6 weeks, he may need AFO's as well (Charlie was fitted for her first pair last month and we pick them up in 2 weeks).  I'm taking video of him doing everyday things to show his PT.  He's also having trouble with fine motor stuff.  I'm going to see about getting him in for a neuro eval because it's not just that he has problems with things...I'd swear he's regressing.  This is the child that walked unassisted at 8 months and knew almost 400 signs by age 2.  He didn't used to have gross and fine motor issues!

Enough of that...onto the pics!

Charlie chilling in her chair, annoyed with me because she's trying to watch netflix on the ipad!

I let her hold one of my Mother's Day flowers and she thought it was the best thing ever!

She also thinks it's great when I put my glasses on her!

"Who did this to my hair!?"  No one, Charlie, you can thank Grandma Linda for the stuck up hair genes.

Adrian having fun at the park.


sarah said...

I'm glad you are getting help for Adrian. No matter what the diagnosis is, you have friends who can help you understand it! And the earlier you seek help, the sooner he can get any therapy that could benefit him--my oldest, now 16, was not diagnosed with ASD until he was 11. By that time OT said all they could offer him was a stinkin handwriting class?!wtf? So he gets no OT or PT, and his 6 year old brother has better gross motor and fine motor skills than he does...

Anonymous said...

I've been following your blog for a couple months nOw and have thought time and time again about some ways your DS reminds me of my DS. My DS has aspergers. I hope you get the answers you need to get him the help he needs. Oh, just a side note...I have Crohns, lol