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Dawson at a birthday party yesterday. Sorry for the poor quality cell phone video footage but I can't seem to scrape up the 200 necessary to purchase the droid X phone I have been lusting after... Have I mentioned that I turn 40 in August?? That means I am having a birthday soon........ Usually people buy presents........................... and 40 is kinda a big deal................... Hint hint.............

So this birthday party yesterday was for one of Madison's friends and we took the D man with us and he had a ball... He ran and played and went down the big gigantic slides they have there all by himself.. He played with other kids and he never even bit or attacked them... amazing!! HAHA

He really had fun and we had a blast just watching him be a little boy. Notice him saying and signing more as soon as he hit the bottom.. What a cutie huh?????

Seizures have been worse over the past few days in the sense that they are holding on to him longer, and he still has these terrible fits a few minutes before some of them. BLAH!!! Oh man what I wouldn't give for a few minutes alone in a dark alley with the seizure monster!!!!

Our love goes out to all of you

Jeff

Nervous

We are approaching the start date to getting Dawson on Clobazam. Of course I get online and read everything I can about it.. I have a way of "over educating" myself on this kind of stuff.. Out of all the drugs we have tried, this one seems to be the most inline, as far as treatment goes, for his seizure type right now. Buuttttttt... I keep reading things like this.


"We tried this medication for a short period of time. For us it was a disaster. Did nothing to help control seizures and on top of it Alex became very volatile with aggressive outbursts."

"Lauren was on this for 6 months when she was 3 1/2. It was a terrible drug for her too. She became really oppositional and aggressive on it to the point that we did not have much quality of life as a family. No one admitted that it would cause such problems (she was on a low dose 10mg/day), but as soon as we got her off, she became a much nicer child! Coincidence? I dont think so."

"Ana is currently on clobazam for the second time. Does she have seizure control - yes... at the cost of our family's quality of life. She screams, bites herself, hits, doesn't sleep, and on and on and on. I'm sorry, I know you were looking for some positive. I know some kids get sleepy on it, that wouldn't be so bad? Ana is up to 20mg a day but even at lower doses we had problems"

"We put our 3 yr old boy on 20mg per day and at first it worked well but after 3 months he worse than ever.His behavior has changed and he constantly dribbles,he struggles with his speech,and is totaly lethargic.We are now going to try to wean him off it.Looking at the long term effects had i known what i know now i wouldnt have gone near the drug.Desparation to find a solution sometimes make us oblivious to the risks which in a lot of cases means that the outcome of using a drug can be worse than the reason or illness that we are trying to prevent in the first place."


GRRRRRRR!!!

Ok so heres the thing. I realize that for every bad story, I can find one that says the drug caused no behavioral issues and worked perfectly. I know this. BUT ( and Im going on nearly 3 years of history here) If rage, aggressiveness, or behavioral issues are even mentioned as a side effect, then its trouble for Dawson. He seems to be very sensitive in this area. I mean currently we are on Keppra ( very low dose) Zonegran, Banzel, and B6 and we already have more issues in this area than we can stand. It really effects all of our quality of life. We don'd dare try to go out and eat, we just have to pick and choose where we take him right now. Short trip to the store...... OK for the most part. Running errands??? completely out of the question.

Sooooooooo.. Yeah, Im nervous about Clobazam.

( and excited because maybe, just maybe, this one will be the one)

Your prayers are so appreciated

Jeff

And sometimes......

And sometimes he eats normal things like spaghetti instead of grass and paper towels

And sometimes..... instead of trying to pull the ears off of the dogs he actually lays down and loves on them instead.

Sometimes things seem almost "normal" around here

The things Dawson eats

First things first... Dawson's foot did return to normal size and the bruising went away a day or two after the last posting. Apparently he does not do well with fire ant bites.

Now, on to the post..

It's hard to believe how badly Dawson's need is to be orally stimulated. Honestly, I actually thought that as time went on that this would get better. If anything, its worse. He ALWAYS has to have something in his mouth. Just this week, here are some of the things I have found him chewing on :

Kleenex, paper towel, paper plate, cardboard, pencil eraser, dog food, paper clips, Blue Crayola Marker, grass, Madison's arm, Katelins finger, a guitar pick and a he chewed a playing card to pieces.... and that's just THIS WEEK!!

I don't understand the correlation between seizures and this oral stimulation thing. But its real, and as he gets older its becoming a huge challenge. We have yet to fight the " Paci battle" because honestly as long as we see a paci in his mouth i know nothing bad is going in there. He has never swallowed any of these things.. He just chews on them.... ALL DAY

We have bought the latest and greatest " chew toys" for kids and guess what??? hes not interested in those. Its the off the wall stuff he wants to chew on.. Basically all the things listed above along with any toothbrush he can find. I just wish there was a way to stop this behavior!!

We ventured out this afternoon to our local splash pad to beat the heat today. We didn't really know what to expect because Dawson is pretty funny about things that are water related... For example, he will sit in the tub and play all day long if you let him. He doesn't mind being in there with the shower on either but try to put him in his little kiddie pool and watch out.. He hates it. All things considered he did pretty good. He didn't really mind the water too much but he wasn't a big fan of it splashing in his face. As long as one of us were holding him it wasn't too bad and when we saw him sorta starting to get antsy and fussy we jetted out of there pretty quickly before he could make a huge scene.

He is still doing really good on talking. He is consistently putting words together now but we still have ALOT of challenges ahead of us with this issue.. Still lots of frustration on his part with him not being able to communicate with us when he needs to. Unfortunately the only way he knows how to react to frustration is with violence. Needless to say, speech and behavior still remain our two biggest obstacles.

We are in the process of getting Clobazam from a pharmacy in Canada. In the meantime we are weening Banzel. I'm trying not to let myself get too excited about Clobazam. Dawson's neuro was pretty excited about him being on it as its Tailor made for his seizure type ( according to her) but we have been through so many drugs and failed them all so Im not getting excited just yet... let me rephrase...... We remain prayerfully hopeful that God will work through this new drug to stop these nasty seizures.

Thats about it for us this weekend.. Trying to stay indoors as much as possible because its so dang HOT outside!! I can't believe I spent all Winter long wishing for hot Summer days again...

Much love to you all

Jeff

Bitten

Well its bound to happen.. Anytime you let a kids run around in the yard barefooted in the south, they are apt to get bitten by something right?? Were thinking he got into some fire ants and is having some sort of allergic reaction to the bite. That explains the swelling but not too sure on the bruising?? Anyway, were watching it closely and hopefully his foot will return to its normal size without doctors intervention... We did dose him with Benedryl ( which can lower seizures threshold) but as my beautiful wife said... " so maybe he has one or two extra seizures... lets get his foot back to its normal size"

Which also reminds me of a conversation we had not too long ago. It was an evening and Allison were both getting in from work and as always " the question" is asked.. So... how many seizures did Dawson have today?? On this particular evening the question was asked very casually and the answer was 5 seizures.. My response was a bit celebratory and I remember saying ALRIGHT!!! and then it hit me...... and I laughed to myself... Have we really become so accustomed to seizures that I am going to celebrate only having five seizures today?? Thinking back to two years ago, if you would have tried to tell me that one day I would be happy that my son only had five seizures in one day, I would have called you crazy!!! But I guess that's really where we are... Happy that it was only five and not 25.

I guess as time goes by we have certainly become numb to the "number" of seizures he has a day. He has good days and he has bad days. We celebrate and praise god on the those good days. Although we don't celebrate, we're a work in progress on still praising God on the bad days too.. Almost 3 years into the battle we have indeed become a little numb to the number, but we still find it impossible to find any numbness whatsoever in watching him have these things.. The seizures he had in my arms today was just as painful as the first one I ever saw him have. I don't think that will ever go away. There is nothing that can numb watching your child have seizures. No numbness for the damage they do. But there is HOPE!! and HOPE is what we hold on to daily.

Thanks to all of you who pray for us

Jeff and Allison

A Saturday Monster

Yeah, today so far has been one of those days. Little man is completely out of sorts today. And when Dawson is out of sorts... LOOK OUT!!

He has been acting out violently towards everybody in the house today ( mainly pinching and hair pulling) I can't tell you how many times Ive seen him run out of the room mad today and I have yelled to the rest of the girls RUN!!!! because i know hes hunting one of them down to unleash a fury of seizure monster madness. Stupid seizures are definitely getting the best of him today..

Dont dare ask him anything, don't dare offer him anything, there is nothing that can be done to fix it when he gets like this.

Its just one of those days!!


Jeff

Banzel???? not impressed

I think Dawson's seizures have a mind of their own. They do what they want to do, when they want to do it. Never mind the brutal cocktail of meds we concoct and shove down his throat. Nothing we give him seems to help. Me, ever the optimist, likes to take the approach of, well, just think how bad it would be WITHOUT the meds... But some days even Im hard to convince he wouldn't be better off without the meds... So i guess you have figured out by now that our new drug we have been on ( Banzel) is doing absolutely nothing... Except making him a little more cranky than usual.

Can't blame it all on the meds though. I know seizures have a big play in his crankiness. Just the other day he was fussy, I mean really fussy... Very irritated and all out of sorts. After about a couple of hours of this fussiness he has a pretty hard seizure and immediately afterwards.... TADAAAAAAAA were back to happy Dawson. Its as though he can sense one building and he finds it very irritating. Who can blame him right??

The good news... These days finds Dawson more happy than not. Yes he has his moments BUT the better part of the day is spent with him running around, chasing his sister, playing with his toys, climbing on everything in the house, looking at books ( he loves to be read to) Wrestling with Madison, eating everything is sight, dancing, singing, and being what I consider to be an otherwise normal almost three year old. Other then the few behavioral outbursts, Im telling you, you would find it very very difficult to see Infantile Spasms, or any other seizure type in him. Speech delayed?? Yes other than that?? no problems... and that my friends is what I still consider to be a MIRACLE. Praise God

Other news... Madison and Katelin got glasses this month... Always something right???

Not much excitement going on in our little corner of the world right now.. and I couldn't be happier!!

Love to all

Jeff and Allison

Summer stuff

Hope everybody had a great 4th of July. Allison and Madison and I went to hang out and watch some fireworks. We wanted to take Dawson but he usually starts going downhill later in the evening. Since the fireworks started at 9:00 ( which it typically past his bedtime) we decided to leave him behind with Grampy so that Madison could really enjoy the show.. Maybe next year little buddy!!!

Our summer days seems to have been packed full the past couple of weeks. Working, kids, yard work, gardening so on and so forth.. just busy doing life stuff. Our favorite time has been late in the evening when it starts to cool off just a little. Every evening we all get outside, Madison and Dawson ride in their Jeep, we pick the garden, tool around in the yard, pick blueberries and whatever else yummy we can find. Dawson really really enjoys being outdoors. If only we could get a break from this awful heat!! Its been miserable hot and the rest of the week doesn't look any better... If you enjoy upper 90's and humidity... then this is a wonderful place HA

Overall, Dawson has been doing really good. Mood is off and on as usual but the good days are out weighing the bad days by a ton... He has "moments" during the day ( usually in the morning) where he just gets all out of sorts but as the day goes on he gets better and better until its sleepy time. Developmentally he continues to progress. Its a slow pace but as i have said before, as long as were progressing and not regressing we will take it. He talking continues to improve and is able to put words together more and more easily.. We have been stuck on one word at at time mode for so long and we are all very excited to see his vocabulary expand like it has been doing. We have always been so proud ( as most of you know) of Dawson and how he has fought tooth and nail to overcome all these nasty side effects of seizures and meds.. We are so very very proud of him!!

He is currently on 3 different seizure meds. Banzel, Keppra ( very low does) and Zonegran. I can't imagine having all three of those drugs in my body.. Talk about brain scrambling!!! and then throw in a bunch of seizures on top of that??? You can see why we are so proud of him that he is progressing developmentally.

Speaking of seizures... Dawson's seizure patterns have been very random. Single seizures scattered throughout the day. A concern that we have is the fact that over the past few weeks we have been seeing clusters of seizures again.. It just makes my heart sick!! Granted he hasn't been doing it a lot, but we were really really really hoping we were past the clusters of seizures days.. There is nothing harder on this earth to do than sit and count seizures during a cluster.. I think during his last cluster he had 20 something seizures. It's just heartbreaking and the seizure monster pulled a fast one on us.. I hate the seizure monster. If only I could meet this beast face to face........ Instead he plays like a coward and hides in the brains of these innocent little children. I hate seizures... and I hate what they do to children and their families.

BUT... I love God.. and he is so much mightier than a million seizure monsters. I don't know why Dawson has seizures. I DO know that its not because of lack of prayer.. Oh there has been prayer.. Days and days and hours and hours of prayers. I have never prayed harder for anything in my life.. So if we have been praying, and he continues to have seizures, then that leaves me to believe there is purpose in all this. As a matter of fact, Im convinced of it. If my son having seizures, can be used to glorify him, even in the tiniest way... then I am all for it.. All that is left for us to do is be obedient and search for his will in all of this.. The truth is, most days I find that very difficult to do. As a father, its almost impossible to watch your own child suffer like this.. But I have found that on the hardest days, if i be very still and quiet, I can hear his voice in all of this and it comforts me, it brings me peace. In those moments, all of this seems to make sense.. Its impossible for me to explain other than the fact there is peace and purpose. A story waiting to be told.. So we are along for the ride, trying to do the best for Dawson, trying to make the right decisions concerning his care and his future.... Yes God gave us the boat.... but were way over our heads here, so were letting him drive!

Thank you for your prayers for Dawson.. please continue to pray for our family

Jeff and Allison