I wish I could scream it from the mountain... Seizure Free for One Year!!

What an amazing year this has been. I remember at the end of the summer, 2010, thinking... what are we going to do? Our doctor in Utah retired and the doctor they turned us over to had no real direction for us. I recall his words very clearly, "what do you want to do?". It was like he just wanted me to tell him to write a prescription for something so he could be done dealing with it. But, the amazing people that come into your life just at the right moment, through prayer and a burning desire in our hearts to never give up. My good friend, Kelly, who's son has recovered from LKS told me about Dr. Chez. She had a good connection to him, and best of all, I had his direct email. So, I emailed him and about an hour later he responded to the email and told me to bring Dray to CA. He saw Dray only just a few weeks after I contacted him. You would have to have dealt with specialists, especially highly sought out specialists, to truly appreciate how quickly he saw Dray. He is the most amazing doctor, not just because of his expertise which is impressive, but mostly because of his caring demeanor and determination to find answers. Dr. Chez and many prayers are the reason we are here at this moment!

All of that being said... I have to share the emotions that went along with Dray's EEG that he had on October 7th. Todd usually goes with Dray to the hospital, it is much easier for him to do it, but he ALWAYS texts me pictures of his EEG. Well, Todd texted me a picture, and it did not look like the nice calm straighter lines of previous EEG's. Well, my first reaction was concern. So, I kept comparing to the old pictures, and started to panic. After many tears, because of all of the memories of language loss, and how hard treatments are on his little body... it all flooded back to me. I just lost it. I emailed Dr. Chez the picture (knowing that he needed to see the whole night to know for sure). But, I had to do something. He IMMEDIATELY emailed me back and told me that he thought it still looked good, but needed to look at all of it. Even with his positive words I was so overcome with all of the different emotions that involve Dray: not seeing his progress, watching him lose language again, not being one day closer to leading a normal life, all of the weight gain, watching him suffer with being hugely overweight and having such high blood pressure, all of the tears to find a cure, and I could go on an on... I was just incredibly overcome with how much we had gone through and I realized how fragile and precious his life is to me, and how fragile and precious his current success is. I have to be grateful each day for his progress and not take that for granted.

So, for those who might be reading this for their own child, I wanted to let them know what one year seizure free looks like (for our son). He understands ALMOST everything with out sign. New and unfamiliar words I just need to say very clearly and articulate. He can mimic almost any new word we say to him. He will mimic phrases he hears us say. For more complex explanations I have to use sign, or use very simple words and explanations. His language is much more complex, and vocabulary MUCH larger. He is barely starting to sing songs again, simple songs. His major struggles: telling complex stories and complex sentences, memory, and attention. Even with those issues we could not be more grateful, at least we try to be grateful every moment for where we are now.

Dray's Birthday!

I'm glad Todd wrote the previous post for Dray because he has been silent in this blog... and he is not a bystander in all of this. Todd is very involved. I am the one that is persistent, and always pushing for more answers and more progress, Todd is the calm one that doesn't stress as much, but just shows love and concern for Dray. They have such a neat bond. Todd has to be gone for 6 weeks for instructor pilot training this summer. He was on skype with Todd and said, "Dad, I want to take you out of the computer and snuggle you!" He loves his dad!! This past week Dray has really been communicating so much more effectively. The new words he has added to his vocabulary are coming at an impressive rate. I can hardly believe the words he is picking up and repeating back to me. I have not seen him pick up new words like this since he was probably 3 years old. I know we are not totally in the clear, but if this continues I see such a great future for him.

Dray had his birthday on Friday, July 22nd. Every birthday is a time of reflection for me. On his 4th birthday, just 3 days before, he was diagnosed with LKS. I remember not being able to explain the concept of a birthday to him... he had no idea what was happening, or how old he was, he couldn't understand anything going on around him that day. I couldn't ask him what he wanted for his birthday... he didn't have the words to respond to that question. He could barely speak. But, this year has been awesome. He understands everything, and came to me with a list he had made of the presents he wanted. He could repeat back to me what we were doing for his birthday, who was coming, and he knows how old he is. This is so different than 2 years ago. What a miracle!! Only problem is that he now thinks he is old enough to do everything.... he says, "I'm 6 now, I can stay home by myself, or I can light fireworks...." Oh dear! What a sweet little boy... can you tell we love him so much? He is constantly amazing us, and we can't wait for more!

For those who might be interested... we have kept Dray on Depakote (20 ml daily, split into 2 doses), zarontin (6 ml daily), Namenda (2 ml daily), L-carnosine ( 1,000 mg daily). I know when I talk to other parents with LKS kids I always wonder what their meds are, so that's for those of you who may be reading this for info regarding your own child!

Kerri has made every post on this blog and for a while I have felt like I needed to contribute. Perhaps a father’s perspective about Dray and this experience on our family could benefit someone.

The first thing I want to mention (as Kerri has done) is the amazing people who surround, include, and encourage Dray continually. Doctors, Speech therapists, Nurses and Specialists provide much more than their professional expertise, they deliver a level of care and genuine concern that goes well beyond Dray’s medical needs. Family members from all over the country and some from overseas have included Dray in their prayers, contributed to his trust fund, and many of them have taken the time to learn sign language to help Dray feel welcome. Specifically, I want to acknowledge the Grandparents who are probably Dray’s favorite people on earth. They have had a profound influence on his character and his self-image and continually support Kerri and I on a daily basis to deal with the stresses associated with Dray’s condition. We have also been fortunate to have friends and neighbors who have gone out of their way to include Dray in activities.

Of all the people I’ve mentioned above I believe three people in particular truly shape Dray’s life more than all others… those people are Dray’s two sisters Kate & Elle and Dray’s amazing mother, Kerri.

• Kate (14 months younger than Dray): It is awesome to watch the kids play together because Kate takes the time to sign everything to Dray and then he responds by using words. Both struggle through the process, but both enjoy each other’s company and they really do play well together. Kate is particularly advanced for her age and very mature with how she patiently communicates with Dray. We couldn’t have asked for a better friend for Dray.

Elle (4 years younger than Dray): Elle has an impressive signing vocabulary and she does an awesome job communicating with Dray. Even though Elle pushes Dray’s buttons at times she provides an opportunity for Dray to teach a younger child about things and he really does watch out for her needs.

Kerri: As many of you can tell who read this blog, Kerri is an amazing mom. She has never given up and has chosen to not let this challenge defeat Dray or our family. She has persisted numerous times when we weren’t making progress and her persistence has been CRITICAL for Dray’s advancement. I can’t overemphasize how her persistence and continual efforts to find the best treatments for Dray has made the difference. Kerri has been right so many times on what steps we should take and what we need to do to move forward. I shutter to think about where we would be without her intense involvement.

Shots, doctor’s visits, constant medications, the inability to communicate, and the fear of not understanding what is happening in the world around him have forced Dray to be a “big boy” at a very young age. He has responded brilliantly and continues to move forward in life. Dray is absolutely an amazing boy. With his disability he should have no reason to have confidence to speak with or communicate with anyone, and yet he approaches people without the slightest hesitation and engages people with his huge smile and just starts trying to talk like there is nothing wrong with him. I’m amazed at how fearless he is about life and his level of confidence. His ability to jump into people’s hearts is astonishing.

I was able to take Dray to his latest appointment with Dr. Chez. We took two flights from Salt Lake to Sacramento in the morning and another two in the evening to return home. It is a very long day, but it was a pleasure to be with Dray throughout it all. He made a number of friends throughout the day. Our first flight when we walked on board I turned right to go down the aisle and Dray turned Left and entered the flight deck. He just wanted to say hello to the pilots. When we arrived in Sacramento Dray was able to win the hearts of a couple of Southwest Airlines gate agents and they let him make a Passenger Address in the Terminal, a simple “Hi” rang throughout the building. His appointment with Dr. Chez went very well and it was good to see the level of knowledge Dr. Chez had on Dray’s case. Dray had a fun time playing with other patients while we waited for our appointment. On our first flight home he sat next to a 7-year old girl who was flying alone, amazingly she knew a lot of sign language and chatted with Dray the whole flight. When Dray discovered the girl’s Uncle owned a Ford Mustang he instantly fell in love with her. Before the flight ended Dray asked her if she would give him a hug. The embrace was priceless. While we waited for our last flight of the day Dray made friends with a woman and her dog they entertained each other for about 20 minutes. On our final flight a flight attendant loved Dray so much she gave him a huge bag of airline peanuts. It was his prize trophy for the trip.

Our blessings continue!

We had an EEG for Dray May 18th, but it took so long for us to get the full results back from Dr. Chez, due to USPS issues and Dr. Chez being out of town. But, I was confident he was going to tell us that his EEG was still clear because I saw it and it looked so good. So here we are at almost 9 months of cleared EEG's.... seizure free! Dr. Chez a few months ago had said that when it has been a year we'll see the biggest changes. He is still on the same meds: zarontin, depakote, and namenda. He has cut back on speech therapy from 2 hours per week to 1 hour per week. Melanie, our beloved speech therapist, suggested the cut back. She felt he was doing much better and would benefit as much from just the 1 hour. Still a long road ahead for him...

I have to say that although I'm incredibly grateful each day that we have, for 9 months, conquered this disease I am constantly on a roller coaster of what I think his outcome will be. More times than not I know that if he stays on this course he will be fine in a few years. I know that he will for a very long time, if not all of his life, have learning disabilities. His auditory memory is horrific. He struggles to remember new words he is learning, although this is much better than before, it is still hard for him. A lot of times he can repeat new words, but still with a lot of complex words it takes a few tries or it's just off a little. He really struggles to remember songs, phone numbers, and counting is difficult for him. He does fine if he can sign it, but trying to just say it can be a struggle. Everything takes longer for him and what you think he understands one day can either be forgotten or misunderstood the next day. I think I have to see the much smaller steps he has taken and not get lost in the thinking of how he is different from other kids or how long it takes to understand a concept that is easily understood if your brain is working correctly. But, he is on a good path, and when I look at where he has come from I know that there have been changes for the better and his language and comprehension is ever so slowly coming back to him. Patience with something that comes so easily to all of us and is just a "given " for all children is and will be our challenge to overcome. If I had to choose two words that get me through LKS it would be patience and faith. I need both of those virtues to face this on a daily basis.

I recently read a book titled, "Search for Tomorrow" by Keith Mason. The book was about Colleen Mason, who at the age of 3 lost all of her language due to LKS. I recommend it because this family was an amazing example of NEVER giving up on a child with this condition. Colleen did not speak for 2 years, but they kept searching for answers and solutions, and moved their family anywhere they had to for the best schooling and therapy. This was at a time when LKS was unknown and there were no medications. I look at all of the schools and teachers that we have in place to make Dray's life and recovery as wonderful as possible. Colleen had those same amazing people in her life, and I know this will be a major part of Dray's recovery, just like Colleen. Colleen graduated from college, was an All-American track runner, got married and has 4 kids. These are the things that I want for Dray. Simply... for him to have a family and be able to provide and give his love to them, and receive love back. I am so grateful for all of the people in his life that make this dream of mine even a possibility that I can dream about. I also know that anything is possible with God and I put my faith in Him that He will give Dray all that He needs to overcome and be on the path that God wants him to be on. I just hope that I am aware and prayerful enough to do His will, as a parent, for Dray.

Enjoy our pictures of Disneyland. Dray loved it! What an awesome time we had and we so loved spending time with him and the girls. Great memories!! I wish I could post all of the pictures. I hope to continue to have good news from here on out!

P.S. I get so many great comments from moms of other LKS children. I would LOVE to communicate and share more with you, but I am not the best at responding to comments on the blog. If you would like to email that would be better, and I really would love to share even more! My email is kerrideshler@yaoo.com

Let's just continue to have GRATITUDE!

GRATITUDE is completely what I feel right now. We, of course, ALWAYS have Dray in our prayers and in our fasting. Todd and I pray for him constantly and Kate always prays for Dray to get better. We are seeing so many answers to prayers for Dray. From Kids Village (Dray's school) and what a perfect fit that is for him to actually seeing almost 7 months of cleared EEG's and steady progress in language and comprehension... I am trying to be grateful for ALL of it. Even if it all went away tomorrow. I have to celebrate each success no matter how big or small and I have to minimize the bad. Not to say, ignore it, because you certainly have to address all of the issues and disabilities that LKS brings with it. But, I find that if you make a big deal out of all his problems and issues... you make yourself and your child miserable. I know what needs to be done: special teachers and schools, sign language, being safe and aware of his social situations, extra time explaining simple concepts, medicine, doctors visits, and I could go on and on. The point is that if I sit and make those things the focus then I am a depressed mom.... he doesn't need that... nobody needs that! So, I choose to focus on all of the things that we are succeeding at.

March 11th was another cleared EEG and that was with him off of his steroids completely!! So, let's go through all of the blessings that this news brings: progress with language, weight loss (4 lbs lost), blood pressure stabilizing, so much more energy and smiles, and his social skills increasing. I can't believe how much more energy and how much happier he is with no more steroids. Yay!! Other things can be falling to pieces around me, but Dray getting better makes everything easier to handle. We just got back from California on a trip to visit Dr. Chez. He has put Dray on 2 new things to help with his recovery. I might have mentioned the supplement, L-carnosine, and now a medication called Namenda. Namenda is supposed to help with auditory processing problems. Dr. Chez has done a lot of research on how to get these little brains to heal and recover. So, we do what he tells us. He said that Namenda may cause him to be irritable, but that is the only side effect to look for. So, we'll see how he does on it and hopefully we'll have even one more piece to Dray's recovery. We had a good trip to CA and Dray made so many friends. He wraps people around his finger. The flight attendants just go crazy for him. They invited him to the cockpit to sit in the captain's chair. He LOVED it!! That's an understatement!! The pilot was even fluent in sign language. Dray and I always meet such interesting people on our trips because he is so friendly, smiley, happy, and adorable. People just love him... and Dray just loves them right back! My sweet little Dray Bear... I love him!

Where have I been? Not blogging...

But, I'm back at it now.... finally, I have a moment. We have been busily finishing our basement. Which is a big project in itself, but to add to it, I will be teaching ballet and fitness classes in it. So, there is much preparation, and much time taken away from me and blogging. But, it's nice to sit here and reflect on Dray. I really just love him, and as much heart ache as his life brings, I feel so much joy being able to raise him. I feel victorious when he overcomes the slightest of struggles. He humbles me, makes me more patient, more loving, more sensitive to those struggling, and this list could be endless to the amount of maturing, learning and refining I have gone through because of him. Hopefully, my family is being benefitted by my growth. Although, I am all too aware of how much more I can be doing for him, and I am definitely nowhere near to perfect.

With that being said, we are at a good place right now. He is still VERY heavy and uncomfortable and he is still not quite as chipper as he once was (still edgy and grumpier). But, he is really making gains that are awesome to see. I feel less frustration from him in every area of his life. He is learning in school so much better, communicating so much better, socializing better, and this means the world to us as a family. We went to Sacramento to see Dr. Chez again. We looked at his EEG together there, and it was awesome!! Yay!!!! So, I always ask the same question, "If we can't keep him on steroids.... how do you keep the seizures under control after he is off the steroids?" He seemed confident that with how much we have reduced his dosage and his EEG staying clear that he will be able to remain seizure free. I'll believe it when I see it, but I'm ALWAYS hopeful. He is down to 20 units (.25 ml) injection everyday and we started at 1.5 ml. We have one more week on the .25 ml and then we reduce down to that amount every other day. At that point we need another EEG. I'm reading this and realizing that I need to start scheduling that EEG NOW!! Always something. Dr. Chez was happy with how much he has changed clinically. Of course, he is nowhere near to where other kids his age are, but he is at least able to understand most of what we say to him with out using sign and have conversations with out sign. Dr. Chez says that about a year of being seizure free and we should be more able to tell what his outcome and capabilities are with his language recovery. Patience. He gave us a study he did with a supplement called L-Carnosine (1,000 mg is what he takes). In his study there was a positive change in language and autistic behaviors in children with abnormal EEG's. So, we are trying that now too.

He is doing well considering his disability and I couldn't be more grateful for that. He reads well, writes well, understands his homework, and has friendships despite it all. Not to say that these things don't have any struggles that come with it, but he is doing well and progressing. He is a very typical 5 year old and is just a delightful little boy. Sometimes a little too independent for his own good. I cannot tell you how often he just figures out how to do things on his own and doesn't need anyone's help. He just takes care of his business. He makes me laugh!!