Medical Stuff

Little Miss Adorable wired for a sleep study

Sometimes stuff is just stuff.  And sometimes stuff takes over your life.  For a family with special needs, medical stuff can take over your life.

I try not to let it.

I wrote about the challenges and ridiculous state of appointment juggling in the Busy Busy Month of May

After an exhausting spring, summer where we reprioritised, and fall where we adjusted to many changes, our family is about to start a new state of busy.  Cue the cycle of many medical and therapy appointments.   But I think we are smarter this time around.

We’re taking charge and tightly prioritising.

We’ve decided (after endless research and requesting a doctor change) to go ahead with Human Growth Hormone Treatment for Little Miss Adorable.  We know we need an Occupational Therapist to help Mr. Sensitive recognise letters and deal with the sensory demands in his life.  Oh, it would be nice if Little Miss Adorable could walk, too.  So we need more physiotherapy for her.

But that’s not as big of a priority as Mr. Sensitive’s letter recognition – the stress around his letters has caused some serious sleep disturbances, bed wetting and an eye tic.  Never mind his demolishing total mood and sense of self-esteem.  At a recent pediatrician’s visit my doctor handed me a list of books on dealing with ‘your anxious child.’  Add this to my stack of books on dealing with ‘your difficult child’ and ‘your out of synch kid.’

Mr. Sensitive is currently refusing to do anything with letters at home, and is avoiding anything to do with letters at school.  His teacher brought in a SmartBoard (the coolest thing in educational technology so far) and set up a letter recognition game for Mr. Sensitive and his best friend.

After school I asked him how he liked playing the new game.  He was grumpy and said he hated it.  This is the kid that uses laptops and  iPhones to create his own films and watch movies?  What did he say about the SmartBoard letter game?  It was too hard.

So we are investing in tech and time to help Mr. Sensitive learn his letters before he rejects school in its entirety.  Hubby bought him an iPad and we’re going back to our occupational therapist.

Little Miss Adorable’s major medical stuff fits into the sidelines of our life – sleep study, cardio exam, blood work – all the prerequisite stuff for Human Growth Hormone (HGH) therapy.  HGH therapy will improve her muscle mass as well as make her taller.  (Right now Baby Dunk is taller than she is.)

With Little Miss Adorable’s improved muscle mass, walking should follow.  So we are not really worried about this.

Little Miss Adorable is pretty laid back about her heart check

Baby Dunk brings his own medical concerns.  Namely, he is creating them.  A biting, kicking, headbutting force of destruction, Baby Dunk is a force to be contended with.  See Dunk Dunk Attacks for more on this.   So far Baby Dunk has knocked out one of Hubby’s teeth (requiring a few dental exams and a specialist), bruised my orbital bone and nearly broke my nose (both times necessitating first aid at home via a bag of frozen veggies).

Missing tooth, bruised face and nearly broken nose – these don’t even register on our list of medical needs.  They are simply not priorities.  But damn, they hurt!

Little Miss Adorable – post sleep study breakfast.
One must really prioritize!


About Angela

Super-powered, Special Ed teacher and special needs mama to FOUR (!) children with an assortment of special needs; including Duchenne Muscular Dystrophy and Prader Willi Syndrome. Our family features a heavy dose of good ol' ADHD). I blog about our halfpastnormal life.
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