Wow Raymond!

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!