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.

2014

2013

2012

2011

2010

2009

2008

2007

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;”

http://youtu.be/WzeouxaE_Qw

 

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!!!

 

 

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! 

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!

 

 

Say What, Ray?

I have said before that Raymond keeps us on our toes…well, after 12 years of being diagnosed with CP and Mitochondrial Disease…we finally received a name for his rare mitochondrial disorder….you ready?  Here we go….. Complex Oxidative Phosphorylation Deficiency Type 13, or COXPD 13.  What is that?  It is too confusing to get into right now, so let’s just say it is a label, a name, nothing changes in his treatment.  But with this comes understanding of what is happening.  This last week since we got the news, it has been hard to explain how I’m feeling…maybe a little overwhelmed, somewhat discouraged, but mainly just plain tired, really tired.  He was having some rough days last week with his little stomach just not wanting to work, and when he doesn’t feel well, it is sometimes a struggle to use his new eye-gaze system.  I have to be honest; sometimes he struggles to use the device and can not do as well.  Sometimes he just looks at me as if to say, “you know what I need Mom.” Sometimes the eye-gaze sensors need to be adjusted…this is a learning process for us.

But I have been asked a lot about how Raymond is doing with this communicator.  It is hard to explain, but this will take time.  When he first got his Cochlear Implant at age six and started hearing for the first time, some expected him to understand them right away.  But imagine a baby; hearing for the first time, Raymond was like an infant in his understanding of language.  It takes a child time to learn language.  When a child goes to school, it takes time for them to learn to read and write.  So Raymond is now learning words, picture icons and phrases. Sometimes it is hard for him to coordinate all that he needs to do just to keep his head still and focus his eyes, it is not always that easy to do, but when he does…..wow!  On Raymond’s good days…he is doing AWESOME!!!  We have always known there is a smart little cookie in there….let me give you some examples.

I wish I had some video to share, but it is hard to capture video as sometimes it takes awhile for him to say what he wants.  But then sometimes he has said something out of the blue, and I didn’t have my camera at the ready.  One afternoon Raymond, Lil’ Roman and myself were sitting at the kitchen table, Raymond had the device set on one communication page with 8 options when he, by himself using his eyes, got out of that page and went into a different page with 14 options that he uses at school.  He was looking it over when he chose and said “yuck”. Lil’ Roman said, “Raymond, why you callin me yucky, dude?”  Oh….that got Raymond laughing…we all started laughing.  Then Raymond selected from the same page…”I don’t know”.  We were all cracking up even more.

During the NFL Playoffs, Raymond continued to cheer for our Broncos by selecting on a page of 4 options….over and over….”Go Broncos!” On that same day while watching the game with family, he had not “spoke” with his device in a while when he selected from a page of 8 items…”I Need” which took him to another page of 8 options….”Clean Diaper Please”.  And that is what he needed.  Over and over since he got the device, he has told us that “I Need” ….”Bathroom Please” or “Clean Diaper Please” and sometimes I will ask him to confirm with a yes and no, and out of 8 options, he has selected “yes”.  He has also been able to tell us when he is hurting.  One weekend he appropriately told us multiple times with the device “My Stomach Hurts” when he had an issue with his feeding tube site.  Do you know how long we have been waiting for him to tell us where it hurts????  I was cheering because he was able to tell us, but at the same time sad that he was hurting and tried to comfort and help him.

At a recent doctor’s appointment, we were waiting in the exam room for what seemed like forever when Raymond initiated selecting “I feel” and then “I’m Bored.”  That totally made my day….it was so appropriate, and he did it without me prompting him at all, I had been on my phone catching up on some texts.

Last Friday, when I picked up Raymond from school, I was informed that he had been talking a lot that day, especially greeting people.  And his aide asked him to select a few items which he did, sometimes it took him up to 5 mins, but Raymond did what he was asked.  And to top it off, usually after lunch Raymond’s class comes in to do their “jobs”.  Raymond’s “job” is to stamp the class papers with hand-over-hand help from his aide.  On this Friday, they didn’t do “jobs” and Raymond was sitting by his friends.  Out of the blue, from another page of 4 options…he selected “School”, which took him to a page of 10 selections…and he chose Stamp which said…. “I need the stamp please.” He knew what it was time for….that is our boy!!! .

Last night, we were struggling a bit trying to get him to use his device.  It was easier for him to answer yes or no than to tell me specifically what he needed, but we worked through it and figured out what he needed. Afterward, I moved him in front of the TV while I started to get dinner ready when Lil’ Roman came in the door from training, as he walked by his brother, Raymond said “Hi”.  You should have seen Lil’ Roman’s face, he did a total 360 back to Raymond.  We are loving this!  Thank you Make-A-Wish!!!!  This is one wish that you granted that we get to enjoy everyday!!!!!

To some of you this might all be too technical, if it is I am sorry…but for Raymond this is huge.  When we started the trial two years ago, he was selecting from 3 items, sometimes 4.  Now he is up to 8-14!!!!  This is awesome, this is progress!  And he is using it for more than just making choices; he is expressing his personality, his requests, feelings, pains…he is communicating!

These are pictures of a few of his screens that he selects from....using his eyes:

Out with 2013....In with 2014

Welcome 2014!  Well…we welcomed in the New Year…not with a Bang, but with a Cough. Our family has been fighting nasty colds to start out our New Year; I guess we are just getting the cold/flu out of the way first thing.  As I am sitting here thinking back on 2013…..it was a very difficult year.  To my friends out there who wonder what the heck has been up with me lately, please forgive me.  This past year has been rough; I just remember feeling most days so overwhelmed, tired, lost, beaten, helpless and sleepy.  Life constantly offers us changes, one of them in 2013 was Raymond’s big brother Roman started driving and at the same time broke his ankle in football and needed surgery.  Life is always throwing curve balls.  But two big issues really stick out for Raymond this past year…seizures and the all consuming fight for a communication device.  The second item has a happy ending, so I will get to that one in a bit. 

Struggle No.1…Seizures.  With everything Raymond has had to deal with over the years, seizures were never one of them until they started for the first time 3 years ago.  These Tonic seizures are scary to Raymond and to us.  And we have tried many combinations of seizure medications with no control.  The number of seizures that we have recorded has tripled this past year, and we are not sure how many seizures he is having that we don’t see, like in the middle of the night.  This past October, we decided to try the Ketogenic Diet.  It is a high fat, no carb diet that has been able to control seizures in some who have tried it.  With a hospital stay to start the diet, medication changes, measuring multiple ingredients and making formula, and the daily testing of Raymond’s urine to make sure he was in “Ketosis”…it was a lot of work, but we would do anything to stop the seizures.  I want to thank you all for your prayers, but after 3 months of having Raymond on this diet, there has been no change in his seizure activity, so we are weaning him off of the diet and will try a few other combinations of medications and start to research another option.

Struggle No. 2….2013 was filled with the all consuming fight with the insurance company to acquire the Speech Generating Communication device for Raymond that uses eye-gaze.  That was NOT FUN at all…..but I don’t want to get into the negatives…many of you already know this has a happy ending, but let me give you a little history.  We were approached by Make-A-Wish back in November of 2011 and they told us that Raymond was eligible for a wish. Now let me tell you, the possibilities that came to mind for his wish were endless.  We all came up with ideas…family camping trip, Broncos football game, or Disneyworld would all be awesome, but what did Raymond want?  Make-A-Wish allowed us to place his wish on hold since we had just started the process of the trial to rent the Tobii C15 communication device.  We are so grateful they allowed us to hold his wish, as we wanted to make sure Raymond was involved in making his OWN wish. After the 5 month trial we requested a purchase of the expensive equipment through our insurance company, the quote was over $17,000.  The whole process of denial and multiple appeals with the insurance company took us over a year, and one of the major reasons for leaving me feeling so overwhelmed and beaten.

We feel like everything happens for a reason, and The Lord surely guides us through our lives.  Right after I posted on our blog about the crushing news of the final denial for the Tobii C15, I got a message within an hour from our friend David about NEW technology that had just been developed through Tobii ATI.  The company had just gone public with the new PCEye Mobile unit that connects to a tablet.  The screen of the tablet is smaller than the C15, but can still utilize the communication software and is able to mount to Raymond’s wheelchair.  This was a blessing as this eye-gaze mobile unit is much more affordable than the previous option we were looking at, and would possibly fit within the parameters of a Make-A-Wish.  And, this is SOOOO God….just after David’s call; we got a letter from Make-A-Wish, the National office had made the decision that wishes could no longer be placed on hold...so we had to make a decision by November 2013.  I felt God was nudging us and saying…..it is time.  When we think of what Raymond wishes for, we can say….without a doubt…..that Raymond wishes more than anything to be able to communicate with those around him…so we made Raymond’s wish official to Make-A-Wish.  Raymond’s wish was to communicate.

Many of you already know the amazing ending to 2013….with Make-A-Wish and their helper Santa presenting Raymond with the Tobii PCEye Mobile unit on Dec. 23, 2013.  Please forgive me for not posting more videos, it is a different device than the one we had rented before, so I am learning to navigate around the system and creating more communication pages.  This system does have something that one we borrowed did not have, which is software to help him strengthen his eye muscles and movements and strengthen the “cause and effect” concept….it is called Sensory Guru.  It has some fun activities which Raymond is really enjoying.   But he is showing progress and we are really looking forward to 2014 and the direction that the Lord will lead us.  Thank you Make-A-Wish for giving Raymond a way to start communicating with the world around him.  And thank you all for your constant prayers for Raymond…..God is so Good!!!  Even through the struggles, He never leaves our side.

Proverbs 16:9 “A man’s heart plan his way, But the Lord directs his steps.”

Susan

News article regarding Raymond's Wish:
http://www.huffingtonpost.com/2013/12/24/nonverbal-teen-gift-language-christmas_n_4497490.html