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