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!!