Hi, we are the Lara Family. Our younger son Raymond has Cerebral Palsy, Mitochondrial Disease (a very complex disorder), is profoundly deaf, but hearing since age 6 with a Cochlear Implant, he is feed through a tube and is very medically fragile. We hope that this blog can be a way to share the beautiful blessings from God...there is so much to say about Our Life With Raymond.
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.
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;”
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
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
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!
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:
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
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
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?”
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!