Dance the Night Away!

Since Raymond has started attending high school, he has had some amazing opportunities these past two years, and some of those experiences are very new to him. Please forgive me for playing a little “catch-up", but this past spring Raymond was able to attend his second Special Needs Prom that was hosted by his high school.  The Prom was for multiple Special Ed Classes and attended by students and their families, teachers, staff,  peer counselors (students that help in the class) and friends.  He got to dress up and dance the night away.  How does he dance?  Usually in his wheelchair which is not the easiest thing for him to do as you can see the desire in Raymond’s eyes to dance the way others are.  So with the support of his teacher and staff, she made sure his walker was in the cafeteria the night of the dance.  Raymond was able to tolerate being in his walker for about 1 hour this year and danced the night away!!!!  You can literally see his determined dance moves in the video below.  I have shared this video on Facebook the night of the dance, but we wanted to make sure this incredible night was recorded. He is growing so fast, we are not sure if he will be able to use his walker much longer and we have not found other options in equipment out there yet. But this night was truly an enchanted evening and we all had so much fun that night at the CHS Enchanted Garden SDD Prom. 

Thank you Lord for blessing Raymond with an amazing night of dancing!!!  Psalm 149:3 “Let them praise His name with dancing, making melody to Him with tambourine and lyre.”

 

Video of Raymond's cool dance moves while he is in his walker:

 

Pictures from that enchanted evening:

 

 

Hard Work and Giggles

Good Morning All! As I am writing this, Raymond is still sleeping.  He had a long day yesterday hanging out with mom, running errands and going to PT (Physical Therapy).  PT is vital to keeping Raymond healthy. Mitochondrial Disease (Mito) affects the way the body creates energy, and for Raymond it is in all areas, his muscular system and his major organ systems.  Raymond has hypotonia, or low muscle tone, and it is hard for him to even sit up, which he can’t do on his own.  Raymond has been receiving PT for almost his whole life. And I can’t express enough how grateful we are to the amazing therapists we have had through the years at TerrioKids.  It is not easy for them to work with a kid of Raymond’s size and condition since it is all moderate to maximum assist.  Maya and Christine continue to be creative in working with Raymond.  In the pictures below, they are working with him on upper body strength and head control.  He is putting weight through his arms and trying his best to hold his head up.  Yesterday he worked almost the entire time in this position, which is probably why he is still sleeping this morning, it whipped him out.

On some days, Maya and Christine will give him a break from work and let him have a little fun, but still while working on skills he needs.  They let him knock down bricks.  Even this simple task is not easy for Raymond as his body does not always do what he wants and needs it to do.   But boy does he try!  I just had to add this quick video of him knocking down the blocks, he gets to giggling and it is so contagious. It might be hard to see a kid struggling to do something that is so simple for most of us, like knock down a stack of blocks, but watching Raymond giggle as the blocks come tumbling down, his hard work is evident and his joy is beautiful.   

This makes me think about each spiritual gift that the Lord gives to his children.  Romans 12:4-8 “For as we have many members in one body, but all the members do not have the same function, so we, being many, are one body in Christ, and individually members of one another. Having then gifts differing according to the grace that is given to us, let us use them: if prophecy, let us prophesy in proportion to our faith; or ministry, let us use it in our ministering; he who teaches, in teaching; he who exhorts, in exhortation; he who gives, with liberality; he who leads, with diligence; he who shows mercy, with cheerfulness.”  I believe Raymond has been given the spiritual gift of teaching.  He teaches me so much each day, not to give up, to keep working towards your goal taking one day at a time, how to love and to give.  Raymond blesses us with his determination, his smile and his infectious giggle. Life is to be cherished and love is to be shared.

 

Raymond and Maya

Raymond and Christine

 

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!