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

Halloween 2013

I wanted to get this recorded in “Our Life with Raymond” as this past Halloween was a complete blast.  I will let the pictures do most of the talking...but Halloween is such a special time for Raymond.  Seven years ago I got this crazy idea to make a costume to go around Raymond’s wheelchair, and have been doing it ever since.  Why?  I was asking myself that question this year, it was Sunday night, 4 days before Halloween, and I had still had not even started to work on Raymond’s costume.  I was exhausted, but I grabbed two boxes from the garage and put them in the living room floor to stare at me.  I just had to get it started, and then off I went.  Most of you know we usually start off the morning of Halloween by going down to the local TV station, KGET to attend their Halloween Spooktacular Contest at 5am.  It can get overwhelming sometimes, and the thought of skipping a year because it is too much work had come to my mind….but Raymond loves it….I couldn’t stop now.

Why?  It is the one day of the year that Raymond’s disability can disappear.  Any other time when we walk with Raymond into a crowd of kids, Raymond would usually be greeted with stares, whispers and many questions about his wheelchair, or “What happened to him, What’s wrong with him?”  But when Raymond enters the crowd in his Halloween costumes….he gets…”Wow”, “Look at that car!” or ”Whoa….how COOL!”  I love to see the smile on Raymond’s face when the kids come up to him asking questions about his various costumes, and just talking to him.  You should see Raymond’s face light up. 

I am so glad that I did not give into fatigue that Sunday night when I was staring at the two boxes, because this Halloween was truly amazing.  Raymond won the 1^st Place Prize for the costume contest at this year’s Halloween Spooktacular which was Disneyland tickets, and we can’t wait to go.  This year he was a “Bakersfield Police Officer” in his very own car, and daddy put flashing blue and red lights on the car so the crowds saw Raymond coming.  Then off to school where we continued to have fun, his nurse joined me dressed as an inmate, and off we went for the annual Halloween Dance at East High they hold for the Special Ed Classes in the high school district. 

The making of the Police Car...



The finishing touches




The Halloween Spooktacular at KGET TV 17



Halloween Dance at East High with Raymond's class

Crushed...But Not Broken

As I am sitting here writing this, my emotions are all over the place…great sadness, feeling crushed, anger, frustration, eagerness to fight on, huge failure, overwhelming fatigue.  Many of you have kept up on our quest to get Raymond a way to communicate that uses his eyes….it is called the Tobii Eye Gaze System.  It has been over a year since we requested the purchase through insurance…now two levels of appeals later, it was still denied.  This fight has been one of the hardest fights of my life.  After the initial 5 month trial last year in 2012 which prompted the purchase request, we had another trial with the device this past summer through the high school district, and Raymond did amazing!  Even better than last year and he was able to navigate through more complex screen options using his eyes.  He proved that his cognitive abilities are higher than previously accessed.  But it seems that was not enough to warrant a purchase of this device by the insurance company as they suggested we use a manual eye gaze board.  Please understand that what is coming from me right now is extreme frustration, because a manual eye gaze board is completely dependent on someone else presenting options to Raymond, it can only offer a few options and not always what he needs at the appropriate time of that need.  That option does not give him any independence in what he “wants to say”; it does not give him a voice or the ability to get someone’s attention.  Whereas the Tobii is a speech generating device that would say what he chooses….like for example, one screen that he used a lot at school this summer to greet his classmates by saying “What’s up?” or “Today is Legit!”

I don’t know what my next step will be, or where we will take this fight.  And I know it seems weird that I use the word “fight”, but that seems like what this has been.  It's been a total fight trying to get others to see the Raymond we know...not these physicians who come in and make an evaluation based solely on medical documentation but don’t spend time with him.  He is a very complex kid…but there is a very bright kid caught inside a body that does not work well, a very bright kid who has so much love to give and continually reaches for goals that others would have given up on a long time ago, a kid who has so much drive for life….a kid who teaches us so much. 

Our precious Raymond is a gift from our Lord, and I feel it in my heart that God’s will is for Raymond to one day communicate.  All of my devotionals and scriptures lately have been speaking to my heart about trials and trusting our Lord.  This morning I looked up Matthew 6:34 “Therefore do not worry about tomorrow, for tomorrow will worry about its own things. Sufficient for the day is its own trouble.”  As I am writing this down, I am letting go of my pain and I am feeling new strength.  I will keep looking into other options, whether it is for funding or devices, and I will keep praying that the Lord will open up doors for Raymond to one day be able to express himself.

Proof of Your Love

It has been quite awhile since I have posted.  It is this post that has rendered me frozen, I have been wanting to share this since last fall, and finally I am sitting down to write this on a cool Saturday morning as the rest of the family is still asleep.  Have you ever had a moment, interaction or a song that has penetrated your heart and left you different?  Last fall, after dropping Raymond off at school one morning, I had the radio tuned to Air1, a Christian station I love.  As I was making a U-turn to go home, a song came on that I have heard before, but this morning, the song went straight into my heart.  The words came over me….”So let my life be the proof, the proof of Your Love. Let my love look like You, and what You’re made of.  How you lived, how You died…Love Is Sacrifice.”  As the song was playing I was overcome with tears, but not sad tears.  I was crying as a picture of our boys together came into my mind.  I see God's love through Raymond's eyes all the time.  But it was our son Roman that made my heart warm that morning.  It was October and so we were busy with Lil Roman's football season and Raymond’s adaptive sports league.  The League of Dreams was in the middle of it’s basketball season.  Roman and Raymond are very close in age, but very different in abilities.  But Lil’ Roman has always stepped up to help his brother play sports through the League of Dreams as his “Angel” since he was 9 years old.  As the song continued and I was wiping away the tears, I was picturing Roman, hand-over-hand guiding Raymond to the basketball hoop to score, to give Raymond the chance for normalcy and to be able to play sports like other kids.  And Roman has given so many Sunday afternoons for Raymond.  The love between them, Roman helping Raymond, and the smile from Raymond back to Roman, that was pure love, unconditional love, that was a display of God’s love.

Love is beautiful, love is all around us, and love is to be shared.

Our days are far from perfect, we have struggles, frustrations, daily stuff that gets overwhelming, we don’t always get along.  I know I often stumble and fall.  But to quote the song again….”When it’s all said and done, When we sing our final song, Only love remains.”

I truly hope your day is filled with love today.  I have attached a few short videos of Roman helping Raymond in the League of Dreams this past basketball and baseball season.  It is now June 2013 and Raymond is playing in the first ever season of Bowling with the league, so I attached a picture of that too.  But I also am including a link to the video for the song that still goes straight to my heart, it is one of my favorites…..For King and Country – The Proof Of Your Love.  Sorry to overwhelm you with so many attachments, but I hope you have time to enjoy the song today also, maybe it will penetrate your heart too.

Proof of Your Love Official Video:  http://www.youtube.com/watch?v=b-2dKOfbC9c

 

Let our lives be the proof of His Love!
1 Corinthians 13:1-7

Keep Moving Forward

Life can really be stressful, right?  At times I feel so overwhelmed, I want to go MIA (Missing in Action), disappear for awhile, hide under a rock somewhere.  I feel like I am sinking under a huge pile of paperwork and clutter…can’t breathe.  I have run into some of you recently and you have asked for an update on the eye-gaze communication device that we have been trying to get for Raymond.  Well….we are still waiting on the insurance company to render a decision.  It has been 7 months now and I feel like we are going around in circles, or just plain being ignored.  That is one of the many things that I feel are bringing me underwater where I can’t catch my breath. 

But leave it to our amazing Raymond to teach me to get over it and just keep moving forward.  Today in Physical Therapy, Raymond got into the “crawler” (a creatively made contraption adapted from a special walker which gives Raymond the chance to get on all fours to crawl). We got Raymond placed in the crawler as I warned his therapist that he was having a rough day with some spasticity.  He immediately started pushing forward with his knees, not using his hands, he was propelling himself forward.  We started our typical cheering for him when he pulled his left arm out and forward as if to finally utilize his hand in the crawling.  Caitlyn and I stared in shock at each other and began cheering because he had never done this before with his left arm, only his right arm and only occasionally.  But WOW, his left arm!!  But our cheers suddenly stopped as we realized he was having a seizure. Oh poor Raymond, I grabbed and steadied his head and talked him through the short 20 second seizure.  We are having trouble getting his seizures under control, but he has never had one in therapy before. This was new territory for us, so as I was comforting him, he came out of the seizure and looked around.  As I looked over to his therapist to see about pulling him out of the crawler, he started pushing with his knees again, and pushing more than he was before the seizure.  The longer the seizure lasts, the more fatigued he is, but this was short and seemed to not affect him.  He continued to push himself forward another 50 or so feet.  Raymond did not let this stop him from his goal of crawling.  And the best part is he did pull his right arm forward, which he has done before every once in a while or so…..but today he pulled his right arm forward 4 TIMES!!!!

Oh Raymond, thank you baby for showing me to not let life get me down, to overcome, to push forward.  With God, all things are possible.  Raymond, you truly teach me to have faith.  From Joshua 1:9 “Have I not commanded you? Be strong and of good courage; do not be afraid, nor be dismayed, for the Lord your God is with you wherever you go.”

I cannot let stress control me or pull me underwater.  I must just keep moving forward, pushing myself as our amazing son Raymond does.  The insurance company may think that if they keep prolonging this request I might just go away…..but I am just getting organized!  I need to keep pushing for Raymond!

Susan