March 19th Jordan had another neuro checkup and
everything was good, he has some tone back in his right side even though he
still doesn’t move his right leg at all and his right hand movements are not
controlled he is healing. Neurologically he was getting better….how did this
happen? I asked his doctor if we were in the clear and he said honestly he had
no idea, anything could change at any moment, because they have no idea what is
causing Jordan’s body to attack his brain we are just playing a waiting game to
see what he does next. I don’t like that answer but I can live with it. We did
a full assessment on Jordan and he had gained 8kgs since the gtube surgery…..AMAZING!!
The neuro team joked that Mom had also gained 8kgs since this all started.
Needless to say I gave them the stink eye and told them listen, Mom needs
popcorn and chocolate because I haven’t slept in 7 months so back off, and we
all laughed. It’s true, mom has gained about 8kgs also ha-ha whatever, I’m
still 25yrs old and I will lose it quickly (shhh don’t tell anyone that is a
lie)
March 27th Jordan was set to go to school for his
first day in 7 months, how did we get here? I am amazed by this little man
every day. His body is changing, the weight gain, puberty has started due to
the weight gain, let’s not even talk about those changes (BOYS are gross), he
is happy and starting to thrive, the good days outweigh the bad days 7/1. He is
the toughest, strongest most amazing miracle I know. He attended school and was
so happy to be back, he was exhausted after but we have a plan, a new routine.
Jordan is all about changing the groove of our family to meet his needs, screw
what anyone else needs. So he will now be attending school on Tuesdays and
Thursdays. He was so happy to see the school bus pull up and he was getting a
ride. I cried, a lot. Letting him out of my sight, where I can’t jump if
something happens is difficult but I keep telling myself between his nurse and
his EA’s he has great care at school and they will call me and 911 if anything
happens. So deep breaths Mom, what will be, will be.
This is our new groove, school part time, still many follow
ups with neuro, keep a close eye on things, increased seizure meds, gtube, weight
gain, puberty, fighting with feeding pumps, trying to find diapers that fit him
(which has been an expensive but funny experiment), taking the bad days with
the good days, trying to keep a smile on our faces and not worry about what
tomorrow will bring. Jordan is happy and we will follow suit.
“THERE IS GOING TO BE VERY PAINFUL MOMENTS IN YOUR LIFE THAT
WILL CHANGE YOUR ENTIRE WORLD IN A MATTER OF SECONDS. THESE MOMENTS WILL CHANGE
YOU. LET THEM MAKE YOU STROGER, SMARTER, AND KINDER. BUT DON’T YOU GO AND
BECOME SOMEONE YOU ARE NOT, CRY, SCREAM IF YOU HAVE TO, THEN STRAIGHTEN OUT
THAT CROWN AND KEEP MOVING FORWARD LIKE THAT BEAUTIFUL QUEEN YOU ARE”
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