Pittsburgh, Take III

Journey to Pittsburgh, TAKE III

I wanted to start off this blog by telling a little story about William's nap today.  So, after I put him in his crib, I decided it would be a good time to take a nap myself.  About 30 minutes into the nap, I hear something over William's video monitor.  I have it turned up pretty loud so I hear just about everything:  the cat practicing parkour on the hallway walls, the buzzer on the dryer, the air conditioning turning on and off, the ice maker.  But this sound was unique.  My initial reaction if I hear anything over his monitor is to think he is coughing and needs my help right away to check on him to make sure he is OK.  But this time, I looked at the monitor and he was still sound asleep.  You know what that sound was I realized?  He giggled in his sleep!  Something was THAT funny that he laughed while dreaming!  It took me by such surprise I just watched the monitor hoping that the dream would cycle back and make him smile, but the next stage of sleep had been obtained.  When was the last time you heard something that made you smile?  Not the "smile because its the socially acceptable thing to do at the moment", but something that when you're by yourself, with no one looking, and your heart smiles.  My heart smiled something FIERCE today through all this heartache and pain of having a child with a terminal illness that robs his ability to smile.

Anyway, my reason for this post:

Although we just got home and settled, I recently purchased our airline tickets, Robert and myself with child in lap, to go to Pittsburgh August 16 through August 20.  This appointment is considered his 180 post transplant and we are to meet with all the hot shots.  He is going to have all of the testing done that he had completed back in Decmeber of 2014.  Here is our appointment itinerary:


Sunday, August 16, 2015:  Depart SLC and arrive in Pittsburgh

Monday, August 17, 2015
 

NDRD CLINIC APPOINTMENT – MONDAY 08/17 08:30 A.M. -- MARIA L. ESCOLAR, M.D., and NDRD TEAM

BRAIN AND LUMBAR SPINE MRI/LUMBAR PUNCTURE/PFT’s – MONDAY 08/17 – 12:30 P.M. ARRIVAL; 01:30 P.M.  - SCAN

Tuesday, August 18, 2015

 

AUDITORY BRAINSTEM RESPONSE EVALUATIONS (ABRs) – TUESDAY, 08/18 – 8:30 A.M.

 NERVE CONDUCTION VELOCITIES (NCVs) – TUESDAY, 08/18 - 11:00 A.M. - HODA ABDEL-HAMID, M.D.  

 Wednesday, August 19, 2015

BMT APPOINTMENT/LABS – DR. PAUL SZABOLCS – WEDNESDAY 08/19 – 10:00 A.M.

  

 VISUAL EVOKED POTENTIALS (VEPs) – WEDNESDAY 08/19 – 10:45 A.M.

OPHTHALMOLOGY– WEDNESDAY 08/19 – 2:00 P.M.

Thursday, August 20, 2015 - GOING HOME

"Not in the top 1,000"

This is more or less a vent post:

William was denied social security disability.  Yes, it is true he is nearly 100% disabled, but in the state of Utah, along with most states, it is based on family income and has nothing to do with how disabled the individual is.  That's all sweet and stuff, but we are very tight monthly (just like everyone else); I was planning on going back to work this year.  But obviously, staying home and being William's caretaker, nurse, physical therapist, occupational therapist, speech therapist, and of course mother, comes first and pays for itself.  I applied for assistance (not financial, but for respite care through the state of Utah to help me throughout the day), and we got accepted, but was told "his medical condition does not carry a high need."  Are you kidding me?!  How much "higher" can Krabbe Disease be?   So, even though we are accepted, he is "not in the top 1,000".  I don't know about you, but as far as I can tell, if folks are disabled, they don't grow out of it, and if they do, SOME refuse to go back to work as getting a monthly check is much much easier.  So, basically, we have to wait for 1,000+ to kick the bucket or the few that milk the system to gain work ethic, before we can get any kind of assistance.  Yeah.

So, we have a disability lawyer in Salt Lake City that is helping us work on an appeal for social security disability.  I have heard many families have to appeal.  You know how tempting it is to have Robert quit his job (he's not and he won't, ever), then we'd probably bring in more than enough monthly for our 3 member family and William will get all the support he needs and health insurance for free (medicare).  AND, not to forget to mention, Robert could spend more time with his son and not have to be at work 40+ hours a week.  There is something seriously wrong with the system, big time.

Ugh, that's all for now.  

I'm still here!

When William was initially diagnosed, next to his care I felt my priority was to protect his privacy.  No pictures, no blog, nothing.  I wanted to protect him from anything and everything.  I found out quickly in order to raise awareness of his disease, we needed to tell his story.  Better yet, shout his story as loud as we could.  Telling William's story will not save his life, but it sure the heck will save others from going through this living hell called Krabbe Disease.  I am astounded as to how many lives our precious William has reached.

I have been meaning to update this blog, really I have.  Sitting still is not one of my fortes, and we were at a deadlock for about a month with William healing and getting his blood drawn every couple of weeks being the standard.

We have met with a communication specialist, occupational, speech and physical therapist and have an upcoming visit to Pittsburgh for a check up and testing so there will be much more to share in the next few months.

Here's to you, your family/friends and to sharing love amongst those most deserving,
The Branches xo

Here's William doing what William does best:  "Chillin' out maxin' relaxin' all cool..."