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!!

Getting bigger... with no signs of slowing down... so sad!

Dray is hanging in there as usual. Our poor little guy, is unfortunately, not little at all. He has put on so much weight. He seems pretty miserable lately. I'm trying really hard to put myself in his shoes: so much medication messing him up, hungry beyond your imagination, and carrying around tons of extra weight. These things cannot feel good to him and he seems down. He is not nearly as smiley and playful as he was. So, I ask him to smile, which makes me more sad because he can't smile because his cheeks are so full and big. I'm questioning all of his meds right now, but his EEG's look so good. I don't dare to take him off any of his meds when his EEG is cleared and when he does talk he talks so much better, and understands so much more. My heart just aches to have my happy, laughing, playful little guy back. So, with this mood of "missing him" in my heart I realize so many things that I miss about the old Dray pre-LKS. I miss just sitting down and reading books and having him repeat words and phrases back to me, I miss teaching him songs, I miss hearing him sing, I miss watching him really enjoy playing with other kids, I miss him being outgoing and asking other kids and adults questions and engaging with them, I miss telling him other people's names and having him be able to call new people by their names, I miss hearing him quote movie lines.... I could go on and on. They seem like such small little things that you would NEVER think about your child doing and loving it, but to me, for me to have that back would be so huge.

No more being sad. Moving forward. He is doing better and I have to just stay with that. Like I said he had another EEG that was cleared, yay! So, we continue to taper. We have an endocrinologist appointment January 12th. He has been on steroids over a year now, so we need to look at what that is doing to his body, and the endocrinologist helps with that. We go to Sacramento again on January 19th to check in with Dr. Chez. We will do another EEG before we go to make sure there are no changes in his EEG as we continue the taper. We are at 40 units a day right now for the ACTH. Dr. Chez says that he will continue to gain weight until we get down to 20 units. So, pray for Dray. This is hard, I pray that we are doing the right thing, and that this will all be worthwhile in the end. He is my little trooper. He sits right down for his shot everyday and chooses where he wants to put it. He rarely cries about it. He takes all of his medications and supplements (about 5) everyday with no fussing. He asks me if he can go to speech and to get a white hat at the hospital. I could not be more grateful for such a sweet little boy!

Little bit of good news... again...

Dray's EEG was this last Friday on October 15th. He got hooked up, and now that I'm not so clueless (thanks to Dr. Chez), I can now tell what's kind of going on. Let me be clear that I'm no EEG expert at all. I just can tell what Dray's EEG should and should not look like. Anyway, I was so excited because it looked so good. When he fell asleep it looked perfect. Believe me I sat there just staring at it and waiting for the screen to show the seizure spikes. I think I saw maybe one page with a bit of spikage (yes, I know that's not a word). So, the EEG was completely and dramatically different from the EEG in California. Yay!! I mailed the EEG to Dr. Chez immediately. I was just informed a minute ago that my assessment was right on.

The bad news is that the steroids have really messed Dray up this time. He is ravenously hungry. His eating consumes his day. He just is searching, talking, thinking, and devouring food from the moment he wakes up until he goes to bed. But, it's not just that he's hungry all the time... no, no he has VERY specific menus made up in his head. If you cannot deliver on that menu it is just crushing to him. He'll decide it's a pizza or hot dog or whatever, and if you don't have that he is in a "roid rage". He gets so angry. It might not bother me so much except for the fact that it seems like he has no desire to do any activities besides eating. I take that back, when he's not eating he wants to lay on the couch like a beached whale because his stomach ALWAYS hurts. His stomach is so tremendous right now. I was patting it and said to him, "look at this tummy," to which he replied, "yeah... I'm fat". He said it like it was no big deal, but that he is aware of his largeness. He told me that for exercise he wants to ride bikes with dad, unfortunately Todd is in the Middle East right now. So, no exercising for that chubby little guy. He does give a great big bear hug these days. Love it! Anyway, Dr. Chez wanted to start tapering a little. So, we'll start tapering down a bit. Hopefully that will relieve him a little of some of these nasty side effects. I love steroids and I hate them. I have difficult feelings to reconcile with on this medication.

We go to California again on Tuesday. Hopefully this time we will not be staying at the Sutter Hospital Hotel, but at an actual real hotel. I will let you everyone know the full plan from there. Once you stop the seizures.... how do you keep them from coming back? That is the million dollar question. We shall see how Dr. Chez responds to the question next time on "Living with Landau Kleffner Syndrome". I will update then. Thanks to my family, and you know who you are, they help us endlessly. How blessed we are to have you!

California Adventures...

Well, I took Dray to Sacramento, CA to see Dr. Michael Chez. Where to begin? I booked us a hotel, not knowing what to expect because nobody could tell me over the phone. Well, we ended up having an all inclusive experience. A room with one bed and a fold out chair for me, all meals included, movies, a toy room, and only 2 hours per day allowed outside of our room. Sutter Memorial Hospital had it all! So, if you did not catch any of my sarcasm we stayed at the hospital for almost 3 days hooked up to an EEG. Dray did great though. No complaints and just took it all like a champ!

Dr. Chez is just really energetic and really "hands on". He talks everything over. We looked at a bunch of Dray's EEG's comparing and showing me what it should look like. Believe it or not, no doctor has done that for me. So, it was nice to sit and stare at those seemingly senseless scratches moving all over the computer screen and actually make sense of it. He had a bunch of ideas and did not want to waste one single second. He seems so bound and determined to kill this thing. He said the neurologists at Primary Children's did a good job, but he was disappointed in the lack of EEG's documenting Dray more carefully. Also, with seizure activity as stubborn as Dray's he was disappointed that they did not push the steroids longer. In his opinion you can't "pussy foot" around. If you are working with seizures that stubborn you either go full boar with it, or you don't bother introducing those side effects to the child when it does absolutely nothing to stop the seizures. So, we're going a different route with steroids... again. As hard as it is for me to stomach it. His feeling is, and I agree, that this is a terrible disease that if you don't get control of it could be too late. So, we're doing an ACTH shot every day. Which, guess who is the tougher one to give the shot, me or Todd? Me. Hands down. Todd won't even go near the needle (just a side note). The first night at the hospital his EEG showed minor breaks in seizure activity. The next night Dr. Chez wanted to step it up a notch and he doubled his depakote and gave him a large dose of valium (a drug I absolutely detest). But, it was that or put in an IV for more steroids. His seizures did break a lot more, but not as much as we had hoped. So, all that and in the morning Dray goes to get up and his legs are jello. Can't walk and immediately falls onto the floor like he's drunk. So, I carry him to the bathroom where he can't hold himself up to go potty. A drunk 5 year old. Crazy.

So, where do we stand? ACTH shots everyday until our next EEG in 2 weeks, and then reevaluate at that point. We are keeping him at a much higher dose of depakote. Now for some cute and funny stories. Dray has a way with people. He is as other people have told me, "infectious". So, the EEG tech puts on his "hat" and says to me that he is unheard of. He just sits quietly, lets her put it on and he talks sweetly with her. Which, leads to her "infection" with Dray. She comes back to visit several times each day bearing gifts each time. Dray just wraps people around his finger. Dr. Chez was quite smitten as well. He just could not believe how well adjusted, smart, and sweet Dray is. He just repeatedly told me how well he is doing, that he is smart, and so high functioning. He said, "I wish all of my kids were as cute as he is". The best story though happened on the night shift. I noticed our night shift nurse was a VERY pretty girl. I thought, "uh oh, Dray is going to flirt with her". Dray is SUCH a flirt with pretty girls. He took one look at her and turns to me and says, "I like that girl!", with a BIG smile on his face. She is just laughing so hard. After that he says to her, "You are cute," and says,"can you marry me?". She was dying. So hilarious. She was already married, or I'm sure she might have agreed to do it. She was smitten with his suave ways. He cuts right to the chase. No time to mess around.

I know I'm long-winded, but bear with me. So, this is also of interest, maybe just to me, but I have to share. I talked with Dr. Chez awhile about his other patients. He told me he had treated about 50 patients with LKS. He said that people have come to him from all over the world, and usually in the later stages of it. So, I'm an early bird for him. Anyway, he said that of those 50 most are not LKS in the classic "text book" sense of LKS. That's what Dray is. He is smart and hasn't lost his intellect, they can learn sign, and they tend to have a better outcome. He said that usually LKS has other issues compounding it. Autism and different types of epilepsies that compound the issue. Dray is much more rare. He said that most of the kids he has had similar to Dray have turned out fine, but there are some who came to him later in the game that had persistent problems later in life. So, we have a few things going for us. We never know what Dray's future is, but it seems I keep getting encouragement along this horrible journey. Thank goodness for that! Seriously, Dray is such a joy and I just want him to have everything in life! Because, I know that he has so much to give to others. He truly is remarkable. I could really go on and on about my admiration for that boy! So, I will end it on that note. I will update 2 weeks from now. Lots of prayers until then!

It's been awhile...

Dray did have another EEG on the 28th of July to see how he responded to the 3rd IV steroid treatment. His EEG did not look good and has basically gone back to the way it was. For some reason I'm okay with this. I think because he seems to be doing so much better than he was. He is talking better, responding better, playing better, learning better, and he's always making progress. The progress is slow, but he is always gaining skills that help him with his disability. Even on bad days when he can't understand or talk as well, his signing is so good now that we can have good conversations and I can explain everything to him and he can do that for us. It's really been in the past few weeks that I feel like he's going to be okay. I know he has a disability and recognize he needs a lot of help and interventions, but I really feel like his intelligence is intact enough that he will someday be able to put all the pieces together and have it work out.

What to do now? That's a good question... I have no idea!! Dr. Thompson has officially retired as of Aug 1, sad for us. Dr. VanOrman has taken over. He has always read Dray's EEG's in the past and I have met with him before on a few occasions to discuss Dray's treatment, so I feel comfortable with him knowing Dray and his situation. He has given several suggestions to think about and I really don't know what to do. One suggestion is to go the Mayo Clinic. Kelly, if you are reading this I need to talk to you about the doctor you suggested in California. That seems like a possibility. We talked about more seizure drugs, depakote, to be exact. Maybe even surgery. Which, we talked to the surgeon already in Chicago about. We just need to follow up with more EEG's that he needs to see. I just feel directionless right now. So, then Dr. VanOrman said that we might consider that Dray is doing much better than he was before and we know that someday this will stop and maybe we shouldn't pursue another direction. Just keep him on the pulse steroids and ethosuximide until this ends one day. So, maybe I should run a poll, and whatever wins that's what we'll do. Kidding. But, I do feel like anything we do is a shot in the dark. I don't feel strongly about any one direction. I feel conflicted in any choice, actually. I won't bore you with my inner dialogue on the pros and cons of each choice I face. So, that is where it stands for now. My last phone conversation with Dr. Thompson was really great. I was having a tough week and told him that I had to know that either he was doomed or that he would come out of this. He flat out said that Dray will be okay; there will be language restoration at some point, although he can't say when. But, he has dealt with this more than any other person I know and he is confident that Dray will be fine and that in his experience with this condition, the kids have turned out much better than the literature suggests. So, to get to the point now,when I do make another decision I will post again!

FYI: Dray's school for kindergarten next year has been decided on. He will go to a private school, Kids' Village. They have an ASL class for him, and the class size will be right. The curriculum will be challenging for him, but the learning is more hands on. Perfect for him in every way!! What a blessing!!

Here's the latest news...

We had an EEG on May 25, and Dr. Thompson called this morning to give me the news. He said the seizure activity has picked up again. Not as bad as his first EEG's, but it has increased a great deal from the last 3 EEG's. So, here we go again. I have NO idea how to keep beating this thing off, but we are going to do another 3 day IV steroid treatment. That has been the only treatment we have tried yet that has been a great success. We will go in on Tuesday (June 1) to start that. After the IV steroids Dr. Thompson wants to keep him on a higher dose of oral steroids for a little longer than we did this last round, and instead of tapering (which is what we have been doing) we will put him on the pulse again. The pulse steroids are taken 3 days a week on high doses instead of taking the meds everyday. Todd and I are concerned because how many times can you go back to doing IV steroids. It doesn't seem like it would be reasonable to do an IV steroid treatment every 3 or so months. That is something I need to talk to the doctor about.

Today I told Dray that he was going to the hospital again because the seizures started again, and that he would have to get an IV in his hand. He was totally calm about it and just told me that he wanted the IV to be in his hand and not in his arm (the PICC line) because the IV in his arm hurt him more. He signed the sweetest prayer too. He prayed, all on his own accord, that he could get better and that his seizures will stop. That was so sweet to me that he knew he could pray and ask for that. Today was bad news for us, but I have to say that lately I have had so many reminders of what a remarkable child Dray is. I had a meeting with the deaf school because Dray will need 1 of 2 situations for kindergarten next year: to go to the deaf school, or to have ASL services in his kindergarten class. We talked for more than an hour about Dray and it seemed like over and over they were astonished at his abilities for a child with such a disability. His ability to do so well academically and be able to understand sign so quickly. His teacher reminded me that he is academically well above most kids his age for kindergarten. I get so discouraged by his disability that I need to refocus on all of the things he is so capable of doing, and there are many!! This is difficult to face again. We have been seeing some signs of good progress lately, and I so hope we can stay on that road. He has been able to understand spoken language so much better lately. We have been teaching him so many new words and able to remind him of words he couldn't remember how to say. It really has been awesome. Pray that Dray and our family can keep moving forward. Hopefully we'll have better news for the next entry.

More EEG results...

I took Dray to speech therapy the other day, and Melanie (his speech therapist) asked if we had his April 20th EEG results back. I usually call Dr. Thompson about a week later to get the results, so I told her I would be calling him the next day. But, then she realized that she could get access his records through the IHC computer system, and got the results for me. The seizure activity is still looking good and holding at about the same level, maybe a little better. The seizure activity is very infrequent. Todd and I's next question is how to get rid of them completely. I did ask Dr. Thompson this question the last time we talked, but he seemed to think that would be difficult to accomplish that at this stage. He mentioned that in his opinion seeing this kind of EEG was exactly what he was hoping for. He also did not want to, at this point, fiddle with new medications before we got him in a completely stable place with the steroids. We need to know that the steroids will hold him at this level. But, I will be persistent in this no matter how impossible that dream may be. Well, right now it feels like a dream to have that. Although, we never give up.

The unfortunate part of all of this is that my worst fear, well almost worst fear, is happening. It's one thing to get the seizure activity under control, and it's another thing to see actual real improvement in language. My fear has always been that we would get this under control and that we wouldn't see improvements. That is how I feel at the moment. I don't see a big change in him. He is not really showing improvement at all. He's basically stuck where he has been since about the summer of 2009. Of course, there has been highs and lows, but always about the same level of speech. He just isn't really understanding people yet, and he is not really talking much more coherently and fluently. He just isn't using language very effectively beyond just getting something he wants. I have been told it takes some time, but on the other hand I have heard of other people's children having quick improvements. So, I feel great anxiety and stress over our lack of improvement.

But, I will end this on a good note. Dray is picking up reading MUCH better than I ever expected. If I show him a new word and we sound it out with him looking at the letters... it is so much easier for him to say it. So, he has started reading little beginner books, which he just picks up really fast. I decided the other night that reading will be a great way for him to learn conversation and sentence structure. I have written out little simple conversations that he can read. He just needs help with how to say things in full and complete sentences and how to respond to others in an appropriate way. He does okay with this for the most part, but he has a strong tendency to not use sentences, and to just jargon with one word responses and comments. We tried it for the first time last night, and it went well for his first time. We are always trying something new, and eventually something will click for him.

Check out Dray's final ski trip... he is an awesome skiier!! Well, for only being able to go skiing about 3 times this year.

I have been hesitant to spread the good news, but....

Here's the good news... no it's GREAT news!! We went to the hospital for 6 days total with a 4 day break in between. Dray was on IV steroids for 9 doses each stay. When he was on steroids orally he was on 2 mg/kilo, but on the IV steroids it was 20 mg/kilo.... huge difference in dosage. But, they did an EEG on our last night there, and the continuous spike wave pattern was broken. Seizure activity reduced by 90%. I was really excited, but since it was done on a night when he was on such high doses and he would be going home to a much reduced oral dose. I was hesitant to really believe we could celebrate. But, I just got the EEG results from this past weekend (April 2), and his EEG looked just as good, a little better even.

The good news for all of you is that you don't have to hear my complaining and ranting this time, and I can celebrate Dray's little victory. This isn't by far over for him, but we have reached a MAJOR milestone in all of this. I know how many of you pray for Dray continually... thank you. I also have to write about my amazing parents, and parents-in-law. My mom and dad do whatever needs to be done to make sure my life is just that much better through all of this. The hours they put in watching kids while we are at the hospital with Dray is such a blessing. My mother-in-law, Carol, came to Utah for a total of 3 weeks to help me out. If you know Carol I don't need to say too much about what a great help she is. She is relentless in her helpfulness... in a good way, of course. My two brothers (Rex and Aaron) came from Texas to be here for help, support, and to spend time with the kids during this crazy time. That was so awesome.... the kids loved it!! We continually pray that this will stay, that he will gradually keep improving, and we can soon enjoy Dray more than we already do. He really is a crowd pleaser, such an amazing child. Well, I hope I have expressed gratitude enough for this wonderful news and to wonderful people that I love!!

EEG results and more...

I feel like I'm writing the same thing every time I write now. We haven't seen any results with IVIG and we are, for lack of of a better word, disappointed. Can you tell I'm waning in my energy with all of this? (READ AHEAD AT YOUR OWN RISK.... I AM GOING TO RANT NOW!!!!)

I know I have to keep going, there isn't another choice, but I have so much anger in me to the point that I feel like I'm not myself anymore. Some days are better than others, and I know I can survive this, but this is with out question the MOST painful thing I have ever had to face. I can tell you why... I know what it's like to have someone you love be so sick and dying. I know that kind of grief, and although Dray isn't dying in the sense that we won't have his physical body here. I FEEL like he is dying in a different way. He is being taken away from me... he can't be himself, he can't interact with us and others with out great difficulty, he can't understand everything around him and grow with what he is learning. He is stuck inside of himself and can't get out. I remember my sister dying and just thinking that she can't go on like this because she was so sick. Watching someone suffer and not knowing how long you have to see them suffer was really painful. When she died, we were of course devastated, but it was such a relief to know that she wasn't going to have to suffer anymore. With Dray I have to watch him struggle everyday, and I have no idea when or even if it's going to stop. I know the seizures will stop at some point, but I have no idea what kind of damage will be done in the end of this. I have lived with this for several years now. How long do I have to watch him suffer? He may end up being fine or he may not be able to ever totally recover and have a normal life. Everyday I can't help the head games that go on in my head of which it will be for him. The torture those games play on me is what really gets to me day in and day out. I think I could come to grips with this much easier if I just knew what am going toward. I know what my end goal is, but I know the statistics on these things, and I am not naive to the odds Dray has. If I knew that spoken language was never going to happen for him, I could take that and run with it. Not that I wouldn't have grief over it, but I would know exactly what his capacity is. Or, if I knew he would be fine eventually, I could have peace with knowing that he will be able to communicate someday. The short term communication issues would not bother me as much. But, this in between garbage of a 50/50 shot of making it...torture!! I will say that I am not totally with out gratitude. I am aware that I have an amazing son. As frustrated as he does get at times he copes beautifully with it. He can still talk! Demands on him to communicate are only going to get tougher, so I pray that he can remain so sweet and wonderful. Sorry for the drama. I have to let it out, or I may go completely insane!

So, here are the options Dr. Thompson has put out there. Most likely we will try an intense steroid approach where he goes to the hospital for 3 days straight on an IV with high doses of steroids. He would have 3 days on the IV 4 days off, and repeat that cycle 3 times. So, that means 9 days at the hospital with an IV in him. I hope they have a mental hospital to check me into when we're all done. Because, for those of you who don't know, Todd is deployed to Quatar until April 13. How will I do this with 3 kids? A very supportive family....thank goodness for them. I would never make it with out them! Dr. Thompson is still considering just trying the oral steroids everyday, again. We will make a decision on Wednesday, he just wanted more time to get as many opinions as possible... to make the best decision possible. So, I'm glad I got my ranting out of my system. Don't worry about writing statements of sympathy... I will spare you all of that. I know you are all praying and praying. What more can you do? And thank you for doing just that... it means a lot!

Quick Update...

We did another dose of IVIG over this weekend (Jan. 30-Feb. 1). It went well on the first day because he slept through a lot of it and we had a lot of visitors. Thanks to Jill and Carson for their visit and my mom and dad. Dray's sisters, Kate and Elle, got to come this time for a little while before my parents took them home. This made the day go by more quickly. We came in the next day on Monday for the next dose. We needed to talk to Dr. Thompson because we have noticed a change with Dray. He is now, several times a day, blinking and spacing out. Signs of absence seizures (pettit mal). So, after a long time with IVIG we went over to neurology to do a quick EEG. Dray was so great through it all. He charms and flirts with every nurse there. He has all of them wrapped around his little finger by the end of his visit. They all gather around him to talk to him, and then he calls out so confidently as we leave, "I love you!" and all the nurses go, "aaaah... he is so cute!!" Dray knows how to win them over.

So, lately I have been thinking he has been doing a little bit better. Better is a very relative term and usually is combined with some other symptom or habit that is not as good. But, he has been able to repeat new words back to us. Which, for him is the most difficult thing to do. I was feeling so depressed because he is now having these little seizures all the time. I just don't want to take steps backwards... ever!! Dr. Thompson called me the next day to discuss his EEG findings. He said they are indeed absence seizures, and now Dray will have to be on yet another medication. We have IVIG, steroids, and now ethosuximide (don't try too hard to say it). But, here's the encouraging part. He told me that his awake EEG overall (other than absence seizures) looked much better than his November awake EEG. Yeah!!! I'll take any good news I can get. Dr. Thompson sounded encouraged by that news. He also added that the absence seizures is in no way an indication that he has taken a turn for the worse, but that it may indicate the opposite. Who knows? I'm just glad that his awake EEG looked at all better. We will do an overnight in 3 or so weeks. I will keep you posted on that.

We are now for sure that Dray has a very violent and nauseous reaction to IVIG. I thought we were in the clear because he reacted so well to the first dose, but no. Tuesday was a disgusting mess of a puke day. I was cleaning puke messes ALL day. Poor guy. He spent all day in the shower and did not ever want to get out. I'm just sorry that he went to school. He just wanted to go so badly!! Next time we will get some medication for that... why should he suffer more than he already has to?

IVIG News and Details...

We are all done with his IVIG treatments this week. Which, had it's ups and downs, but overall went great. On Wednesday he was all smiles and happiness at the hospital. One of the nurses could sign really well and he appreciates when any strangers can sign to him. He lights up and gets so excited. So, the only thing to put him in a bad mood was getting his IV put in. He cried and held on for dear life to Todd. But, as soon as it was done he was over it. We are consistently amazed at his behavior through all the needles, EEG hats, and medications... he just cries at the appropriate time, and then he calms down and does whatever is asked of him. We had to sit for 3.5 hours for the blood infusion, and he did that so great. He got a little bored at the end of it, but was still so patient. He always tells me that he can't take out his IV yet, "the doctor has to take it out... I have to wait". We are writing books for him that are simple, but are effective in teaching him how to read by sight mostly. He knows almost all of his letter sounds, but sound gets very confusing for him a lot of times. So, we looked through the book we made him at the hospital and he is reading it the first time we show him the word. He even can understand fingerspelling if it's a name we've fingerspelled several times. So, the visual understanding is very strong and is in tact. We've got a long way to go on the auditory though... which scares me.

So, we were at the hospital from about 2-8:30 the first night. He slept fine and woke up feeling fine and eating. We didn't think anything about the way he felt until we got into the car to drive up to Primary's again. He almost immediately started telling us that he was going to puke. So, we got out some bags and towels. Bless his heart, he kept trying to stop it from happening. But, out it came. Fun to have that on top of his IV still stuck in his hand from yesterday. Which, was starting to hurt him. So, he looked awful all the way up. I had a new shirt for him, luckily. We got there and he couldn't even walk, or didn't want to. He just laid down in his hospital bed just looking miserable. The doctor came into check him, and she got to have him throw up on the bed while she was checking him out. After that the little guy just klonked out into a very deep sleep. We weren't sure if they were going to go ahead with his treatment because of the nausea, but the doctor checked with the pharmacist and an immunologist (that does IVIG a lot) and they all said it shouldn't be from the IVIG. Yeah right... too much of a coincidence, but that meant they would go ahead with the next dose.

He slept until they got the IVIG set up, and would have kept sleeping, except for that his IV spot was getting so tender. When they flushed the line out he woke up screaming, and kept screaming after the IVIG started going because his hand hurt. Anyway, he finally calmed down. It was a mellow evening for him. He looked miserable and uncomfortable, but we got through it. Today we see no signs of nausea and he seems very happy. I keep asking if he is sick and he says "no," and then opens his mouth wide to give evidence that there is no puke inside. We will have an EEG in 3 weeks and see if this been helpful. If there are any improvements will keep doing it. If not, we'll dump it and move on to just trying several different anti-seizure meds.

Todd and I keep talking about how well he takes everything that he is going through. He seems to calm down fairly easily through it all. I know how painful all of this must be, but he remains so calm and collected through the majority of it. Two cute things: He told me yesterday that his IV is going to help him get better. But, then he also said in his prayers at night, "thank you for the doctor that they took this thing out of my hand." I am continually humbled by Dray that he is going through so much, not fully understanding all of it, and he remains such an obedient, loving, and for a child with his condition, very talkative. It's hard to be grateful that he can communicate this well when there are so many serious deficits in his language and understanding. We just know there will come a day when we can be in the recovery phase, and START to put this behind us. I am his mom, so I cannot imagine him not coming out of this an awesome "in tact"person living a normal life. So, as much as I know the facts, I like to imagine Dray at 100%. I'll take 95% though... I'm not greedy!!

Dates and Times

Just so everyone will know we have our IVIG dates set. Dray will be going up to Primary Children's on December 30 & 31st for his blood infusions. I am hoping to know more details about this process when I call up there. No fun for needles... poor boy, it breaks my heart. But, he really is a tough guy. We got his blood drawn yesterday, and he did put up somewhat of a protest, but overall he took it like a man. He is just so sweet and tries to do everything we ask of him. He has gotten very good at giving himself his own medication. I give him the syringe and he takes care of his business, and that is impressive because he takes a lot of different things. Steroids, fish oil, and some other nutrients that help with various aspects of his condition.

Oh, and just FYI Dray had an awesome Christmas!! He knew exactly what was going on. He told everyone that Santa Claus was coming to his house to give him presents. He remembered to put out cookies and milk. Actually, that was the first thing he noticed in the morning, not the presents, but that Santa ate the cookies and drank the milk. He is really into airplanes, rockets, etc. Anything that moves fast. So, we got him a 3 foot rocket. He loved it and told me he wanted to hug it. I will have to put up some pictures of our Christmas. What a sweet little boy!! Keep him in your thoughts and prayers this week. We just keep praying to find something that will help him. I know so many of you already do... so thank you!

Here's the plan...

I talked to Dr. Thompson last week and we decided on a plan for Dray going forth. My biggest concern expressed to him was that at least on the steroids he has been able to maintain some stability. He hasn't lost his ability to talk completely, which has happened before. He struggles so much to understand us, but for whatever reason he has maintained a manageable level of expressive language. Like for example we'll ask him in a book where Santa Claus is and he'll change the subject or give us the blank stare. But then 2 seconds later he'll say, "That's Santa Claus," so he can say the words, but not understand others when they say it. So strange what's going on in that brain. Anyway, I didn't want to lose that speech again. So, the next step was IVIG (intravenous immunoglobulins). It's a blood infusion that they will do once every 3-4 weeks. I was just freaking about trying it and having any worse results than we are currently having. Dr. Thompson said that we could keep him on the steroids and do IVIG simultaneously. Thank goodness and what a relief!!

Dr. Thompson has become such a source of peace for me. He is never discouraged and always gives me encouragement. One thing in particular that he said was great. I asked him what I'm looking at for the seizures ending, jr. high or high school. His reply was, "Good heavens no. You're looking at months to a couple of years". He also added that we'll have to see what pieces we are left to pick up after the seizures are done, but at least I can look forward to that part being in under control in a reasonable amount of time. Anyway, he is awesome, and makes himself so available by giving me his cell phone number. I don't think anyone can appreciate that until you need to talk to a doctor on a regular basis and you're left leaving messages with an office assistant every time. We'll have another EEG after the holidays... just to be sure, and then we'll do the IVIG after that. We need lots of prayers that something will work for Dray. Thanks to all who offer constant support and prayers for Dray... it is very appreciated!

It's about time...

Finally an update. Life has been crazy... and with Dray it's had some ups and downs. We have tried really hard to stay happy and positive no matter how he is doing, and it does make a big difference. He wakes up everyday so happy. He helps Kate with getting her breakfast, he tells all of us he loves us everyday (many times a day), and he just laughs and smiles no matter what. The past couple of weeks have been tough though. He doesn't seem to understand ANYTHING we are saying to him. It's almost to the point that we have been completely reliant on signing to him. Luckily, he is still able to verbalize his wants and needs, and depending on the day will say quite a bit. So, at least he isn't to the point he was about a month ago when he couldn't even get a few words out. The other night we were working on some "why" questions. We looked at baby faces with different expressions and he had to tell me why they were sad, happy, etc. So, when I got to the scared baby, and asked him why the baby was scared his answer had me laughing pretty hard. He said "That baby is just like Dray, he's got robots in his room. They are in his closet. Is the fan a robot? Is it going to get me?" He just went on and on about the robots scaring the baby, and him for that matter. Such a strange relationship he has with robots... he is both admiring, but fearful of them. Every now and again I get a good glimpse into his thoughts. It is amazing because I can see that there is a lot of imagination and words in his mind, but it is so difficult to get them out and express them to us.

We laugh so hard at his creativity though. Here are some funny Dray creative moments:

• Taking all of my Halloween pumpkins and putting them in the dirt because it's his garden
• Attaching a rake to his bike because he is working in his garden with his trailer
• Taking a vacuum out to the dirt because he needs to "clean the dirt" (can you tell he likes to play in the dirt)
• Turning a diaper genie into a washing machine by putting clothes in it and then almost successfully putting water and soap in it too (good thing I caught him and there was no dirty diapers)
• Dray and Tyson turning the shop vac into a vehicle and riding it down the street

Needless to say our neighbors are always telling me new ideas and projects he has going on outside. Seriously, he does something everyday that is so funny.

EEG results: Dray had an EEG on November 19th. We just got the results today that nothing has changed. We are pretty disheartened. Dr. Thompson is going to call us tomorrow to make some decisions on his treatment. We continue to be hopeful and just try to enjoy what a blessing Dray is in our home. He really is such a joy... despite it all. I can't lie and say that isn't frustrating for us. Kate told us the other day, "you need to stop yelling at Dray," that really made us stop. It is just so hard to get him to respond and get his attention. So, we are going to work on that,and just ALWAYS try to stay positive, have patience, and just adore every wonderful part about him.

More Progress... and even giving Kate speech lessons!!

We are still enjoying the progress that has come with the steroids. Everything he says now is understandable and clear. He is so much happier, and that is always the most welcome of any change we could have. We are almost back to where he was, but we'll take what we've got and be grateful.

So, these are cute pictures from the other day when Dray decided to share his speech therapy experiences with Kate. He got out a bunch of picture cards and laid all of them out. He got a chair for Kate and sat her down. After that he proceeded with his lesson. He would say, "Kate which one is for eating," and she would point, "Good job! Which one is up in they sky?"and on,"Which one drives on the street?". It was so cute and he was so excited to be in charge and teach Kate a few things. Kate was a trooper and played right along with her brother's game. So fun to have him doing so well!

Knock on Wood... we see some progress!

Dare we even say it... we are seeing some improvements in Dray. He is still a happy kid, he doesn't talk incoherent sentences (maybe once in awhile), but he really is responsive to any comments and questions. He answers our questions!! I can understand MOST everything he says and doesn't have to work so hard to get the words out of his mouth. Also, he is saying and mimicking new words every now and again. Which is awesome for him. We are still trying to push the sign language, so that he has that as a back up, and he does awesome with it. He can understand a lot in sign and uses more and more everyday. He knows his entire alphabet and a lot of numbers (he knows those better than me). He is starting to spell out words (by signing what the word starts with). Especially people's names. It has really been helpful and we get so excited to see the confidence he has in being able to understand us all the time. So, Dr. Thompson has switched to the "pulse" method of steroids. He will only take his dose on Friday night and Saturday morning with a dose on Wednesday night as well. We pray this will yield the same progress we have been seeing. It has made such a difference in our home to have him finally able to communicate better. What a sense of peace that prevails when our little guy is doing better. Everyone can sense the change... it is a very tangible thing to all and we are so thankful to see any and all changes for the better. He takes it all so well and continues to fight to speak and communicate. We have decided that Dray is a fighter and does not give up on trying... he is always trying!!

Friday night he got to stay at Grandma and Grandpa Russell's house for a sleep over. I told him he got to go to BYU (which he signs very well) and he was so excited. He told Grandma, once he got in the car to go, where she should turn and which direction to go. He told her she was doing a good job when she followed directions correctly. Grandpa took Kate and Dray swimming in the "scuba diving pool," that is the diving pool with boards, and he went off the high dive all by himself! He just climbed right up and jumped off. Swam all alone to the edge to get out and do it again. He is so brave!

Interesting day!

Yesterday was an interesting day. I was having a bad day, not unusual, but not just feeling sad or down I was feeling so physically weak along with that. I felt such fatigue from everything: physically, emotionally, etc. I was trying to just get through another day, and right at that sad moment a very interesting phone call came. It was Dray's school teacher, Jamie Miller. She was so sweet and told me that she was going to miss Dray so much that she wanted to come see him once a week. This was so fascinating to me. I love Dray to death, but someone else having such a love for him was beyond anything I ever expected. We talked about him and at the end of our conversation she told me what an incredible and special little boy he is.... and how blessed I am to have him. I just broke down to this new stranger on the phone because of how blessed I felt at that moment that Dray had made such an impression and that someone could just love him like that for who he is... even with how hard it is to communicate with him at times. I know he is definitely a unique little guy and I do feel blessed, but sometimes I take him for granted because I am so focused on trying to get him better. I want him to be his old self so bad that I don't appreciate what I have right in front of my eyes.

Jamie and her 4 year old son, Kade came over later that day. Jamie is amazing and Kade was such a doll and played so well with Dray. I was so overwhelmed at this experience and so grateful for people in Dray's life that love him for who he is. After they left he was so full of life and energy. He was saying things he hadn't said in so long. You cannot ever underestimate what an impact love and acceptance can mean to this little boy. I know he feels that from Jamie and it made such a difference to Dray. Thank you Jamie and Kade!!

Progress update

Dray's progress has been slow, actually non-existent, I should say. He has really taken a huge nose dive in his ability to speak. He has moments where he talks very clear and I have some hope. But, most of the time it is either jibberish, repeating the same word or phrase, or just out of breath from trying to say a word or phrase. When he goes through these periods of regression he sounds like a deaf child when he talks. It's crazy how much things can change when he is in a better phase. I feel like I'm going crazy trying to be patient with him because I cannot even imagine how difficult this must be for him, but I feel so frustrated. He tries so hard to talk. I don't want him to not try, so I can't let it show how painful it is for me to hear him talk like he does. It does bring me to tears just listening to how strange he sounds and how awkward all of his words come out. I just know and remember him so differently and I'm finding it difficult to reconcile the two different Drays.

We took him swimming yesterday. He went off the diving board with all of the big kids. He ran and took a big jump off the edge. Everyone watching was amazed and kept asking us how old he was because he could swim so well by himself. He has definitely put his efforts into physical things that he can learn visually. He excels and becomes a whole new child in these activities. We love to find things that he can find confidence and happiness doing.

He is still on the same dose of steroids (prednisone). I talked to Dr. Thompson about his progress yesterday and he assured me that I needed to give it more time. He probably gets tired of over anxious parents that want results right away. It's not so much me wanting results as it is that I don't want to waste valuable time on meds that don't work!! Today I started his picture board for his schedule. He has really taken to it and puts in his own things for his schedule. Like tonight after his dinner picture he put in the trampoline picture. So, we let him go out and jump before bath time. It's fun to see him understanding orders of things and what's coming next. It gives him a sense of confidence in his ability to make decisions and in what's going on in his crazy world. I hope my next entry will be about how I am seeing progress in him. I will say he is staying happy and that is all I can ask for at this point. He is laughing and smiling. His teachers at school just adore him for his sweet temperament. Today was his last day, because we are having home services now. Dray and his bus driver have become quite close in just a few days. Dray looks at him adoringly and the bus driver just adores him right back. They gave each other a big hug good-bye today. It was very sweet.

Good Riddance!!!

Dr. Dray making ME a "hat"

Good riddance to valium is all I have to say. I have part of my boy back again. I say part because he still can't understand anything I say and he struggles with all of his heart to say anything, but he is happy! He is happy and focused again. We can read books again, do his speech therapy assignments (with out it being at all painful), he falls asleep easily, and he is smiling and laughing more. It is so great. Hopefully these things will stick around. I was going crazy trying to get him to do ANYTHING.

The steroids haven't really made much of a difference in his communication, but he is doing great in other areas again. We have really relied heavily on the signing for now, and everyday he picks up more signs. The school district sent me everything I need to get in-home services. I was trying to explain Dray's condition to them, and of course they have no idea what Landau-Kleffner is, nobody does. But, they are willing to do the in-home services, so that's all that matters. Hopefully we'll be able to hear Dray talk normal again soon. We hope and pray always!

EEG News...

We have had a difficult past month. Dray has been completely slipping down hill again from responding well to the valium. Although the effect of the valium only lasted about a week or so, it was nice to see him doing well again for that short time. Dray's side effects from the valium and keppra have been difficult. He is so jittery, can't get to sleep at night, and is just generally unable to calm down for most of the day. It is exhausting to watch him. I talked to his doctor (Joel Thompson) about switching his meds... and he wanted to see Dray's EEG that was coming up before doing so. He had his EEG on August 24th. He was such a sweetie about getting his "hat" put on. Usually he just cries and is in a panic over all of the glue and suctions being put on his head. But, now he is completely okay with it all. He sat so still like a pro and played with some toys.

Dr. Thompson called me on the 28th and said that his EEG had looked just like his first and it was time to go to steroids. So, it's disheartening, even though I basically knew what the result would be. I hate to see him on steroids. The doctor is going to have him taking them everyday (35 mg) and if he responds well we can put him on the "pulse" method of taking steroids. The "pulse" method is taking them just over the weekend on high doses. Until we can do that he needs to stay away from school because of how steroids suppresses the immune system. So, now I need to get the school district to send some in-home services to help Dray. I just hope that won't be an issue.

Dray has been doing well and working hard at his speech therapy. Every time he goes his attention span gets longer with the activities. Sign language is also coming along for him. Last night we had a pretty good conversation in sign language. Dray told me about driving a blue car with dad, and we teased back and forth about the color because it's really a black car. But, he signed most of the words and it was fun to see him communicate clearly that way and understand my signing when I asked him some questions. His neuropsychologist gave us an idea for doing picture boards with him. Which is EXACTLY what he

needs to be able to understand his schedule and surroundings... just making sense of what is happening around him. I am very excited to show him that, and I'm grateful for all the good advice we get from people around us. So nice to have such good and capable people looking after Dray and helping him.

Tomorrow he starts the steroids. We pray that his body will be able to respond quickly and that he will be able to make progress, go to school, and communicate better with us. Thanks to everyone who continues to offer help, love, and prayers for us and Dray.