Just like I said in my last post from February, Raymond’s consistency
of using his new communication device varies from day to day because his health
varies from day to day.
Today we headed
up to Children’s Hospital Central California in Madera for two
appointments.
I was excited for Raymond
to take his talker because these specialists have not seen it yet.
The first appointment was with Genetics for
further confirmation of his new diagnosis of the type of Mitochondrial Disorder
he has (PNPT1 Gene deficiency). Mitochondria is responsible for creating 90
percent of the energy the body needs to sustain life, and this disorder
presents itself differently in every child.
For Raymond it affects his whole body, major organ systems and his
hearing.
Often his body is not working
the way he may want it to work, including eye control.
But today was an exceptional day!!!
So in our first appointment as we were meeting with the hospital
social worker, dietician, the sweet girl who has been helping to get insurance
to pay for all the testing, the nurse and the beautiful geneticist, Raymond was
talking up a storm to them. He was saying “Hi”, How are you?”, “Good Morning”. This is special because he usually reverts
back to how he normally says hi for the past 15 years, by just looking and
smiling. So for him to use his eyes with
the talker so much today was awesome! Then
it switched and he started saying “I need” and from a choice of 8 “Bathroom
please”. He kept saying that over and over, but I told him I didn’t have his
potty chair and to please just use his diaper and I would change him. He did not want that and kept using his eyes
to ask over and over and over….if we weren’t still meeting with the doctor I
probably would have taken him to the bathroom right then and there. He finally did what he needed to and was
changed right away as the first appointment finished.
So on to our next appointment we went, early even…that is
huge for me, for those who know me well.
As we were sitting in the waiting room in the Pulmonology clinic, Raymond said
with his talker, “I want…to play a game please.” That took two choices with his
eye gaze. So I used the software to put
on a simple matching game which Raymond tried his best to do, but eventually
lost interest. He started coughing and
acting uncomfortable right as we were called back into a room to see the
doctor. Right as we walked in….he said
with two choices…”I hurt…My stomach hurts”.
So I said to him…”Raymond, your stomach hurts? Are you hungry?” He immediately
said “Yes”. As I got his feeding ready
and got him hooked up to his continuous feed with the pump that lasts over an
hour, he calmed down. He then said he
needed a clean diaper, but right after he said that and as I was going to
remind him that I just changed him, he said “No”. It was as if he was saying that he didn’t
mean to say that. A little bit later through two choices he
said “I Feel…. Cool”. The picture with “Cool”
is a stick figure with sunglasses and thumbs up. So I told him I was glad he was feeling
better.
We were waiting for over an hour for the doctor, so I put
the screen on Ray’s talker on four options…“YES/NO/I Don’t Know/Back" ("Back"takes the screen back to other menu options) and I started asking him questions.
Me: “Ray, are you tired?”
He said “I don’t know.”
Me: ”Do you want out of your wheelchair?”
He replied…”Yes.” I
told him “soon babe.”
Me: “Is MY name Raymond?”
He quickly replied, “No”.
Me: “Is your name Raymond?
He said “Yes”
Me: “Is your brother’s name Roman?
He said “Yes.”
Me: “Do you want more questions?”
He said “Yes”
I was going to make the next question tougher about the pigs
he saw and the fair, but the doctor finally came in the room. He said a few more things tonight, but I can’t
put it all down, and plus I am tired and don’t remember all of the cool things
he said today. Most of them I recorded
in my phone quickly because it was too precious not too. I loved talking with
my non-verbal kid today! You go Ray
Ray!!! We are so proud of you! And we always knew you could do this! Thank you Lord for the blessing of
communication and the amazing organization Make-A-Wish!!!
This was taken as we were leaving the hospital, he was so happy and in the best mood!