Two Recent Appointments

We had two recent appointments - one really good, one not so good.

 

Last week we went to Children's Hospital to have an Assistive Technology evaluation to try and find, yet again, some type of means for Alex to be able to communicate with us.  I wasn't really hopeful going into the appointment, but the team we met with was really great.  They offered up a ton of suggestions for assistive technology things for her - one was a box that has plugs in that we can plug anything into that's connected to a switch.  For example, Alex loves the sound the blender makes when pureeing her food.  So we could plug the blender into this box, she can hit a switch and it will make the blender work so in essence she can help make her food.  At first I didn't think it was something worth exploring, but the more suggestions they gave me, the more excited I got about it and the possibilities.  One of the toys they brought out was a vibrating textured light.  It looks something like this:

It also plays music - so it lights up, vibrates and plays music - a trifecta of things Alex loves!  However, that little piece of plastic is $180!!!  Sometimes it really makes me angry at how costly things are for people with special needs.

We've tried a few different communication models with Alex.  We've tried communication apps on the ipad, but Alex doesn't have the finger dexterity to point to one thing - she hits the ipad with her whole palm so it selects multiple things at the same time.  We've tried PECS - the picture exchange system, we've tried an eye gaze computer - all unsuccessful.  Alex will focus on things with eyes and sometimes even reach out to grab her preference of two items.  We have tons of pictures of all of her toys, books, puzzles, etc. and we'll use those to see what she wants to play with.  Not really helpful though if she wants to communicate something - or if something is hurting her, or if she's hungry, etc.  The only way to know when Alex is frustrated or hurting is by her biting her arm - she's done that for years and it's not really an ideal way for her to communicate her frustrations.  All of the communication devices or apps cost a lot of money and until she demonstrates the ability to use the devices, it's really futile to get one.

 

The team at Children's talked about using the PODD method (Pragmatic Organization Dynamic Display).  The GREAT thing about this is that's it's completely paper and pictures - no expensive gadgets.  Basically you start out with four squares in a binder.  The first square might be "I'd like to play", the second "I have something to say", the third, "Some thing's bothering me", etc.  You offer Alex the four squares and she can either use a switch to say "That One", or until we work up to that, she can focus her eyes on the square.  Once you know what choice she wants to make, you flip to another section in your binder that correlates to what she chose.  So if she chose "I'd like to play", we'd flip to a section that has pictures of all of her toys - and she can then pick what SHE wants to play with.  I'm pretty excited about starting this - I think this could open up HUGE communication windows for her.

 

Yesterday we went for a genetics appointment.  I really liked the genetic counselor that we met with first.  Alex was being her silly self and we told her that because the doctor was a man that she would likely flirt with him...and she did.  I love how she's been sitting lately - she looks so grown up.

There are so many new tests out, one in particular, that is diagnosing a lot of clinically diagnosed children.   This is Alex's genetics binder that I keep:

 

I had so many questions and things that I wanted to discuss but the doctor was so flippant about everything I had to say - and when I had specific examples to challenge something he said, he clearly wasn't thrilled with me.  When I mentioned the testing I wanted done he brought up that it costs a lot of money - over $10,000 and most insurance companies aren't paying for it yet. But, some are I rebutted to which he tried to disagree. Did he not think I did my homework before I got there?!?  I get that the testing is expensive - but who is he to determine that because Alex is "unique" (his words) that we should wait on the testing.  It didn't take me very long to realize I wasn't going to get far with him so the binder never even came into play.  He told us to come back in a year when HE felt like science would be a little further along with the testing, however, should HE feel like the testing was progressing at a faster rate he would give me a call.  Yeah right, I'll anxiously wait by the phone for that call.  I get SOOOOOOO frustrated with doctors who have a God complex.  This doctor is new to Richmond so I did a bit of research on him and his reviews were not very good where he was, and it appears from the ratings here he isn't making a very good impression here either.  Needless to say we wont be going back to see him and I told Alex she really needs to work on who she gives all of her flirty adoring stares and eyebrow raises to!

Last night Alex got a real bad stomach bug.  I don't think I've ever seen her this sick - or see her cry the way she did.  Alex had a Nissen Fundoplication when she had her feeding tube put in and technically she is not supposed to be able to vomit so when she does she has to work extra hard at it and it's heartbreaking to watch (I wish I had been better informed about the Nissen - I would never have let them do it knowing what I know now).  She's not keeping any fluids in today and she's still running 102 temperature.  She's been sleeping a lot today so I'm praying this is a 24 hour bug and she feels better soon - and the rest of us don't get it.