Our Life With Raymond

Our Life With Raymond

Saturday, September 3, 2011

Keep on amazing us Raymond! - August 31, 2011


Our family just got through a very busy and hectic summer.  With Lil’ Roman in football and both of the boys in summer school, I feel like I blinked and our summer was over.  Raymond did have his 13th birthday and is now an official teenager!  Wow…how did that happen?  As the days fly by, we have these beautiful life experiences that happen and touch me in such a way that I think…I SO need to blog this. But then the days get hectic and I don’t have the time sit down to write.  So here I am….sitting in a tire shop waiting for new tires for the van, figuring that I have at least a full hour of not being able to do anything else, but blog.  So as I sat down trying to remember all of those beautiful events that I told myself I needed to blog…I have slept since then and can’t remember them now…..oh brother!  But there is some exciting news that has the entire Lara Family very excited!  How do I begin to explain?  See, Raymond is a very complicated kid, he is non-verbal, first because of his lack of muscle control from the Cerebral Palsy and second because he was born with a profound hearing loss and even with hearing aids he was not able to hear spoken language.  In 2004 through answered prayers and a special “trial” for children with special needs, he received a Cochlear Implant from House Ear Institute and he has been hearing now for over 6 years..  But since he still can not speak, communication with him has been very difficult and involves a lot of mind reading.  He does not have the control in his hands to be able to use communication boards or other forms of augmentative communication.  Over the years we have tried many different augmentative devices with no luck at finding the perfect fit.  Two years ago we had a trial with an amazing “eye-gaze” system that uses the eyes as the mouse to control a variety of programs for communication.  Raymond is such a social kid, always has been even though he is non-verbal, but during this trial at Kern Assistive Technology Center, Raymond was too busy flirting with the company’s beautiful sales rep that he paid no attention to the computer screen, that’s our boy….”Flirt Master Ray.”.

Well, this summer we tried again, thanks to the help from Margie, an amazing speech therapist with Terrio Therapy who was instrumental in coordinating a meeting with the sales rep from Tobii, a company which specializes in Augmentative and Alternative Communication (AAC).  Margie arranged this meeting for Raymond to use the Tobii Eye-Gaze system while at an appointment at House Ear Institute for Raymond’s Cochlear Implant Review.  Although the sales rep was another beautiful woman and Raymond was flirting like crazy, he was still engaged in the screen and began opening and closing programs with his eyes.  All of us in the room were so blown away!  At one time during our appointment, there were 8 people in that small room all watching what Raymond was doing. We drove home that day on cloud nine!!!  Could this be a possibility?  Could Raymond be able to learn how to communicate using a computer with his eyes, starting with very simple programs, like being able to tell us when he needs to use the restroom, or to tell us he has pain or doesn’t feel well, or his likes or dislikes?  Since Raymond was a baby, he has always been very aware and observant of his surroundings, and engages with family, friends and even strangers.  He has also developed the ability to answer simple questions most of the time with a head nod or shake side to side; it is just hard to tell at times because of his limited head control.  

After the successful trial at House Ear Institute, we scheduled another appointment with our local Kern Assistive Technology Center (KATC) and the speech therapist, Sandy (Picture at bottom).  Once again the beautiful rep with Tobii met with us and set Raymond up with the eye-gaze system.  I thought we were impressed at House Ear, but this was Raymond’s second time with the system and he did even better!  I wish I could fully describe how my heart was jumping out of my chest watching Raymond control fun programs using his eyes and enjoying them!!  We are now in the process of getting the needed doctors prescriptions, letters of medical necessity, speech evaluations and so forth to send to the insurance companies so we can request a month long trial with the system to see if Raymond can learn to successfully communicate.   


I love being a mom to our two amazing boys, but they did not come with instruction manuals.  I don’t know where we would be without all of the help and support of professionals in our community.  I have to thank Margie Madamba from Terrio, for her interest in Raymond’s communication needs and her dedication in finding answers.  I have to thank Sandy Poole with KATC and Kathy Leonard from House Ear, for their thorough SLP  assessments.  I don’t know if this would have even happened if it weren’t for Aaron Markovits and David Mensch with Kern Assistive Technology Center (KATC).  David, who uses augmentative communication devices himself, has always believed in Raymond’s abilities and knows what a smart cookie he is.  Plus I think David taught Raymond some of his flirting tips…..no more of that David!!!

I learned very early on not focus on what Raymond couldn’t do, but to focus on what he could do…..because that list of “Can Do’s” has grown by leaps and bounds and continues to surprise us!  Go Raymond!
Sandy Poole & Raymond at KATC

Wednesday, May 4, 2011

Life in the 7th Grade - May 4, 2011

Wow…it has been so long since I have posted a blog.  I apologize…I have been really busy…just don’t ask me on what, because I can’t remember.  See, as I am writing this, I am sitting in Raymond’s Multiple-Handicapped classroom where he is in 7th grade.  I am “Nurse Mama” today.  See, Raymond started attending school with a nurse 3 years ago because of his ever increasing health needs.  Luckily, Raymond’s Grandma Vangie is an LVN and through a nursing agency, started attending school with him full time.  Did we luck out or what?  I mean, who better to watch over him and take care of his needs that his own Nana, “Nurse Nana” as she is known in the class.  Well, this January Nurse Nana got the chance to do a partial retirement and is now working only two days a week.  Because of the state budget cuts and Raymond’s ever increasing size, we do not have a nurse for the other 3 days a week……so, back to school I go. As I am sitting here, Raymond is working with a Vision Therapist and doing very well.  The other kids are involved in a game.  This situation has been good for me, to see the daily workings of his classroom, what his schedule is like, and what abilities he demonstrates in the classroom.  Plus it is so much fun to play and work with the kids.  I used to help in our older son Roman’s classroom when he was little and have always participated in Raymond’s field trips and parties.  But to be here half of the week and see the daily activities, I am so grateful for the hard work of Raymond’s teacher and the aids and specialists that work with the kids, like the Speech Therapist, the Vision Therapist, School Nurse and of course Nurse Nana and the other nurses that are assigned to other children.  The staff in this classroom is very dedicated to these kids, it is clearly evident.  I joke often that I have gone back to the 7th grade and am learning a lot...like grammar, science and art.  I am learning….about dedication.  The dedication that is displayed in Ray’s class is beautiful to see and is full of love, not just dedication for their job, but their love for the kids.  Often I tell the teacher…”Thank You.” over and over again, but really … Wow…I just realized that today is “Staff Appreciation Day”….and I am really appreciating the hardworking staff in Raymond’s classroom.  What a coincidence…really…I didn’t plan this out at all, just realized it.  The staff here is truly talented and gifted individuals that give their hearts to these kids every day.  Thank you to the staff in Raymond's class!!!

Thank you Lord for the chance to see life from the 7th grade.  ~Mom


Sunday, January 23, 2011

Perspectives…”Wake up Call” - January 23, 2011

God sends me clear reminders sometimes of why I am here.  The role of mom is not part-time, right?  Here it is Sunday morning around 7am.  Yes, I am sleeping in; after a full week, Raymond is still sick, better, but still coughing up lots of gunk.  So we knew last night that we would not be going to church.  Little Roman (Romi to not get him confused with my husband Roman III) had a friend stay the night, and we were all up a little late. I was so comfy in bed and wanted to take advantage of the day available to sleep in, they don’t come very often.  Then, I hear Raymond starting to stir and moan.  The moaning means that he either needs to go potty or he already has and needs a diaper change.  I had a selfish moment, “Raymond…couldn’t you have let me sleep in a little more?” But as he moans again, it hit me, and hit me hard.  I put myself in Raymond’s shoes…..I imagined myself in a body that does not do what my brain is telling it to do, I imagined myself laying in bed, needing to go to the bathroom, but being completely dependent on someone coming in to get me out of bed so I can go.  I could see myself as Raymond at that moment, completely at the mercies of those taking care of him, every physical need, from being placed into his wheelchair, getting fed through his G-tube, to cleaning buggers, wiping his mouth of drool, every need he needs the help of someone else.  Even when Raymond plays with toys, he needs hand-over-hand to be able to hold and manipulate the toys.  Imagine being completely dependent on someone else??? 

That selfish moment was over quick, thank you Lord.  So up out of bed I got, and into Raymond’s room.  He greeting me with one of his cute little smiles, I moved his legs and arms so he could get big stretch.  He needed to go potty, so on the potty chair he went and into the bathroom to do his business.  Once he was finished, I cleaned him up and carried him to the couch for a little cuddle time.  He looked at me with his beautifully expressive eyes, like he was saying “thank you mommy”.  I gave him a kiss on his nose and said “I love you bud”….oops, he can’t hear me yet.  I grabbed his Cochlear Implant and put it on him, turned up the volume, then said it again….”I love you bud.”  His smile said it all, that smile spoke thanksgiving and love.  Raymond’s smile makes it all worth it; it is warming to my tired soul.

I found this from 1 John 4:17-18: “But whoever has this world’s goods, and sees his brother in need, and shuts up his heart from him, how does the love of God abide in him?  My little children, let us not love in word or in tongue, but in deed and in truth.”

Thank you Raymond, for giving me another lesson on pure, unselfish, unconditional love.

Mom

Friday, January 21, 2011

Sick Little Boy - Jan. 21, 2011

Well, I am new at this whole “blog” thing, and I have hesitated posting, not sure what to write first.  See, I am a glass half-full kind of gal, and there are SO many amazing life experiences and blessing that have occurred because of Raymond’s disability, for all of us, our entire family.  I’m just not sure what story to tell first…there are so many.  But as I sit here trying to write, I am sitting next to my sick little boy.  A little background, on a normal day, when Raymond is healthy, he requires breathing treatments twice a day because of poor lung capacity, low trunk control and has a continuous cough because he does not handle his saliva or normal secretions well.  He gets 4 feedings a day through the G-tube, stretching and physical therapy and medicine throughout the day.  So, now that he is sick, he gets 3-4 breathing treatments a day, with VEST treatments (CPT-Chest Percussion Therapy, in picture), suctioning of secretions, and more medications (anti-viral & antibiotic).  When he gets a typical cold, it can very easily turn into pneumonia, so we aggressively treat to prevent that.  Now, as I am writing this, he has been sick for 5 days and has now shared it with me….yep, I’m not feeling to well, but must continue.  That would be any mom right to care for typical kiddos when they, themselves are not feeling well.  But…I think this is God’s way of slowing me down, keeping me at home, focused on my most important job, caring for my family.  I can’t run all over town doing errands or going to meetings for my volunteer work when Ray is sick.  I think God tells me to slow down and focus and He reminds me…”I can do all things through Christ who strengthens me.” Phil. 4:13.  God will give me what I need.  So as I finish this post and give a slight yawn of exhaustion, I will give Ray a little hug before the next treatment, soon our older son, Roman will be home from Jr High with hopefully some fun news….so I will say goodbye for now….more stories to come. 

The Mom

Wednesday, January 12, 2011

Thanks for checking out my new blog Our Life with Raymond!

Hi! We are the Lara Family. Not your typical family as most would think....we are fun loving, sometimes goofy, and I hate to say it, but usually late. I call us the "Late Lara" family. I'm sure there could be more to describe us, but I can't think at this moment. I decided to start this blog as a way of being able to share the many blessings in our life that God has sent our way.   Our boys are gifts from Heaven, they truly are.  Roman is 14 and Raymond is 12.  Both our boys are unique individuals with special talents....but I want to share some of the talents and blessings that Raymond brings to our life each day that people might not realize.  This blog is a way to record our memories, fun stories, trials, and the ups and downs with Raymond.  See...Raymond has Cerebral Palsy (injury to the brain that happened during a very tramatic birth), Mitochondrial Myopathy (a simple definition would be the body's cells don't produce enough energy that the body requires...a very complex disorder), he is profoundly deaf, but has been hearing since age 6 thanks to a Cochlear Implant, he is feed through a feeding tube (G-tube) and has chronic issues with his GI system and lungs.  He is very medically fragile and completely dependent on us for his every need.  That all being said (and I really tried to make it brief) he is a beautiful gift from God!!!  He has blessed our entire family and continues to bless us each day.  If I am having a difficult day, it can all be fixed by a smile or giggle from Raymond.  I hope that this blog can be a way to share our ups and downs with others, and to share what God has done for us through the many trials we have had along the way.  There is so much to say about Our Life With Raymond.