Our Life With Raymond

Our Life With Raymond

Wednesday, October 29, 2014

Is it almost Halloween already?

Here we go.....it is 3pm on Wednesday afternoon, October 29th, 2014 and below is what I have so far....How in the world can I pull this off????  Sooooooo....off to work I must go, but I just wanted to show what we have done since this all started in 2007.  Some years I started weeks in advance, most years it is just days before.  Wish me luck or send a few prayers, I could use it all.





Thursday, October 16, 2014

Shhh...Not Now Ray

I have to share what Raymond did at school this morning, Mr. Personality. His school had all three emergency drills today, which the entire school participated in: first the earthquake, then the lock down, and lastly the fire drill.  During the lock down drill, Raymond’s teacher closed all the curtains and turned off the lights in the classroom.  The whole class was sitting in the dark, Raymond was in the corner with his nurse and they were all instructed to keep quiet.  That lasted only for a little while when Raymond started saying with his talker….”Hi...Hi...Hi!”  His nurse Kaylee was trying to tell him to…shhh, when Raymond then said with his talker…“I want”…”Sit with friends please.”  Kaylee said it was hard not to laugh, but she whispered something like….we can’t right now Raymond.  That is our little social boy!!!  So proud of how he is using his talker. We have prayed for so many years for him to be able to communicate with us.   

I bet you are wondering why we don’t have more videos of Raymond using his talker.  I know that much of Raymond’s progress on his communication device (Tobii) has been just us reporting.  It is really not that easy for us to capture video. Let me explain.  Raymond will start talking and we get excited and jump into a conversation with him or let him do what he is asking for, but once we grab the phone to record, he starts focusing on the phone and smiling and forgets about the talker. I finally captured a really good video of him communicating one of his “needs” last night.  I was so excited and really tried not to over “cue” him, my Speech and Language Pathologists (SLP) friends out there will know what I mean by that.  And he displayed 100% accuracy….again, our SLP friends will know what I mean.  I am very excited to finally present a video of Raymond’s amazing progress on his talker.  We are so proud of him and the progress he continues to make.  The Lord has answered so many prayers. 

Hebrews 10:23 “Let us hold fast the confession of our hope without wavering, for He who promised is faithful;”


Thursday, October 9, 2014

Vote for Ray if you want to Partay!

Raymond completely loves high school!  We could not be happier with the opportunities that he has been presented with since he joined the family at CHS.  So, I have to share that last week Raymond, with the help of his aide Matt, decided to run for an office with the class club, The Soaring Hawks.  Our precious non-verbal kiddo ran for the office of Social Chairman!!! Matt helped him make a great campaign poster that read “Vote For Ray..If You Want To PARTAY!”  And Matt who is very technically knowledgeable, something I really struggle with, read the manual and taught himself how to use and create new pages in the new program that Raymond has for his Tobii communication device.  If they wait for me to program it, sometimes they wait too long.  So, Matt and Raymond prepared a page for his communicator complete with a campaign speech and a way to say “Thank You” after the speech and “Congratulations” to his fellow classmates also running for offices.  And last Friday was their election day, Raymond and Matt went around to all three Special Ed Classes to give his campaign speech.  After all speeches were delivered, the classes held their election…….and Raymond was named Social Chairman for this year!  YAY!!!!  We could not be more proud of our little non-verbal but extremely expressive kid.  This communication device has opened up his whole world!!!!  I have so many exciting things to share…..So I really need to give myself more time to write!!!  

 I am sharing the video of his speech below; he looked at the selection on the screen with his eyes and gave the speech to one of the classes.  You go RayRay!!!  So proud of you Bud!!!

Friday, August 1, 2014

Incredible Adventures at Universal Studios

We really try our best to experience life together as a family.  Amusements parks are always fun, but not the easiest for Raymond’s numerous medical and physical needs.  We have tried Knott’s Berry Farm and of course Disneyland.  Last year we got a great deal on an annual pass to Universal Studios.  Not sure if it would be the best place to take Raymond, we decided to try anyway.  Last year as we ventured into the park our first encounter was with the character Beetle Juice.  We tried to get in line for a quick photo, but the crowd of people around Beetle Juice kept getting in front of Raymond, making it impossible to move to the front of the line.  We were about to give up as Beetle Juice saw Raymond and came over to him.  Not only did he take a picture with Raymond, but he knelt down to talk to him.  That kindness was appreciated more than we could fully express to him even though we were saying thank you over and over. We had a great trip last year and greatly anticipated returning.

July 22, 2014 
Last week we used our annual pass again for the last time.  We have experienced many of the shows and learned which rides Raymond can do, such as the Studio Tour which they can strap his wheelchair right onto the tram.  He loves the Studio Tour, especially the very interactive King Kong Adventure which you would think it would scare him, but he LOVES IT! We just have to hold on to him tightly as the tram rocks around.  They have some amazing rides at Universal Studios, but Raymond does not have the head or upper body control to be able to ride all of them.  But the park has a Child Switch policy which makes it possible for our family to experience the full park, and the staff is always so nice and accommodating, but we can't help but feel like we are leaving Raymond out of some experiences. 

But this trip was off the charts!!  They have a new ride, Despicable Me Minion Mayhem in 3D.  We did the Child Switch to test it and we thought with two of us holding Raymond he might be able to ride this one.  So we got back in line, but when we got to the top we were stopped and asked if he could hold on to the support bar, their policy for who can ride.  We tried to explain how we could hold him, but ultimately he cannot hold on to the bar.  We respect their rules and were getting ready to leave when the supervisor asked us to wait while she made a phone call.  Her name was Anna, she said…” Anna, like Banana, hehe.” If any of you have seen Despicable Me, you would totally get that. She quickly came back and said she would help Raymond to experience the Minion Mayhem, just not the ride simulation.  She escorted us all through the “minion training” and she took Raymond and I over to the Control Room Area in a safe location.  He watched the show in 3D from his wheelchair as I watched how intensely the ride moved, something he really could not have done.  We are so grateful for Anna allowing Raymond to safely participate and experience the ride in this way.  Then she informed us that she had set up a behind the scene tour of our favorite ride Transformers so that Raymond could safely experience some of that ride too!!!  In the picture below is Anna and another staff member as we were waiting to get on Minion Mayhem.  On this trip we were asking if they would do a “Thumbs Up” in the photos to support our friends who are battling Cancer, David Marcus and Naythan Bryant (thumbsupcancerdown.com). Thank you Anna!!

The park has a new water play area and we were able to role Raymond under a few of the water features to keep him cool on the hot summer day! 

As we ventured on through the park, we then met Brenda in the photo below, who wanted to give Raymond the opportunity to meet the characters and get some photos. Thank you Brenda for your loving kindness!

We had a blast meeting so many fun characters.  Spongebob said hi to Raymond, then ran over to big brother Roman for a humongous bear hug, wish we had taken a photo of that!

Woody Woodpecker’s girlfriend Winnie kept kissing Raymond with her beak.  So Sweet!

 The pictures below were taken on our behind the scene tour of the Transformers ride (Our Favorite ride, but one that Raymond cannot do).  Supervisor Julie was our incredible guide and we had a real learning experience in the control room with John Williams experiencing all of the cameras and security features!  We had so much fun with the crew in the maintenance bay and Ken gave Raymond his Transformer Dog Tags! Thank you for making this trip so wonderful!!

One the way back from the lower lot to the upper lot of the park, we met a friend on the handicapped accessible van who was also having a blast at Universal Studios! Look at his cute smile!

We stopped in Universal City Walk for a bite to eat on the way home and that was it for Raymond, he was wiped out and fell asleep after a very full day!

Sorry, I couldn't resist posting all of these pictures of this amazing trip to Universal Studios! 

Monday, July 21, 2014

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:


Saturday, July 12, 2014

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

Thursday, July 3, 2014

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!