My head is so full I can't think

Today has been bad. No not Dawson. He's doing OK for the most part. Yesterday was a good seizure day ( if there is such a thing) but as of 7:00 am he had already had three clusters through out the night which is totally not cool.

But besides that, my brain has been in total lock down mode today. Thoughts of all these kids have crowded my thoughts to the point that I could no longer think of anything else. ( I'm hoping blogging about it will help some.)

My mind today has been filled with thoughts of Trevor and his upcoming brain surgery. Thoughts about what do you do when your faced with such a thing....

Thoughts about Bennett who is fresh out of brain surgery and how in the world do you find the strength to let strangers, for the most part, open your son's skull and take out part of his brain.

Thoughts about Reagan and how much longer does she have to suffer these horrible seizures accompanied with stomach pains so bad she screams for hours. And as parents, how in the world do you cope with a child who's seizures are so bad, and have been for so long ,that developmentally she is at a stand still.

Thoughts about Connor and how his parents are at their witts end as to what to try next to stop their sons seizures. And how miserable it must be to have to hang your hat on what I call the
" Medicine guessing game"

Thoughts about Kendall who recently became seizure free on the Ketogenic diet only to end up in the hospital weeks later with not only seizures, but a diagnosis of Diabetes. And how in the world do you ever get over watching your daughter have a seizure that lasted an hour and 15 minutes.

Thoughts about Zoey who was born with Down Syndrome. Then had heart repair surgery while an infant. Then was diagnosed with Infantile Spasms. Then diagnosed with Acute Myelogenous Leukemia and beat them all back with a stick. Thoughts about how hard it must have been to have to watch all the surgeries, all the meds, chemo treatments, long hospital stays and how in the world her parents lived daily with the thought in the back of their head that their daughter could possibly die from this...

Thoughts about Jackson and his brain surgery from months ago how do you cope with having seizures after going through all of that...

I dont know why my mind is bogged down with all this at one time. I guess the truth is, is that I am really sad that these kids, whom we have come to love, have to go through this kind of struggle. Each one different. Each one with a different fight. But in a way, they are all the same.

Tonight at dinner, I said the words " Trevor" and " brain surgery" and thats all it took to bring Allison to instant tears. We talked about all these kids andven more that aren't listed here and I can't help but come to one conclusion. Even though today, the thoughts of all of you have been like dragging around an emotional anchor......... I am such a better person for knowing you. I have gained so much from your fight.

I am so proud to be able to say I know the Bennetts of the world. The Trevors, and the Reagans, and the Zoeys, and the Connors, the Kendalls and the Jacksons of the world.

These kids, though small, are Mighty Warriors and Fearsome Fighters in my mind.

Maybe the thoughts of all of you have been with me today because I dont think I have ever stopped and told you " Thank you" for what your kids mean to us. Their courage is amazing and we will be praying for each of you.

Our love to all

Jeff and Allison

A mouth full

For as long as I can remember ( which now that I have turned 39 is not very much) Everywhere Dawson goes, he has something in his mouth. He has always been a big fan of his Pacifier, but take that away and hell grab a toothbrush and say " brush teeth" then he will walk around with that in his mouth the rest of the day. Take that away and it's liable to be a book hes chewing on next, or some plastic thingy he will probably choke on. A spoon, a hairbrush, tooth paste tube, Madison's arm, nothing is safe from being used and abused in Dawson's mouth. Very seldom will you see him with nothing in his mouth. As a matter of fact, it's a lot like having a puppy......

His speech therapist said today that its because of his seizures that he feels the need to chew and keep something in his mouth. Has anybody else out there experienced this??? I mean as weird as it sounds, I guess it would make sense?? maybe???

Dawson has been doing pretty well the past couple of days. Seizures are not worse. As a matter of fact they have been slightly better. AND..... his mood has been better too. Only a couple of meltdowns each day which is much improved. We pray the trend continues.

We are very slowly coming off the Keppra. We just can't take it anymore. And are working on upping the dose of Lamicatl and still holding steady on Topomax.

Tonight all is well. Dawson and Madison are having a ball playing together. No wait.............................................................. yep we are having a meltdown now. Shouldn't have said anything!!

God certainly continues to bless us in many many ways and we are so thankful for all he has given us. We hope all of you had a wonderful day today.

Thanks for checking in on Dawson

Jeff and Allison

Finally and update ( and some pics)

Not much new around here these days. Still fighting the seizure monster. Dawson is still playing the " I'm a sweet sweet little boy, no..... wait now Im a mad, angry, raging 2 year old on 3 different seizure meds" game. His mood can/will/does change in the blink of an eye and I feel so sorry for him. It must be complete misery for him to be so young and have all these different meds ( known for altering moods and causing rage) in his little brain.

Sometimes I think the medications are worse than the seizures themselves. When we started coming off the Keppra, there was a noticeable difference in how hard his seizures were. Some of them were very hard and very hard to watch. But when we go UP on his Keppra we get a little better control over them. Meaning he still has them but just not as hard.

We need to remember that controlling how hard they are is not the name of the game. The name of the game I want to play is what is going to STOP them. Of course I have no clue what that's going to be,so we continue to follow the advice, word for word, of those who do seem to know.

Today has been a pretty typical day for him. The weather here this weekend has been just wonderful so late this evening we all headed out to the golf course to play for a while. Dawson was 2 over par after 5 holes and then decided he had had enough and was ready to go back home. Such a shame, he had a great round going!!

Anyway, thanks for your thoughts, kind words, and prayers. We love you

Jeff and Allison

Keto???

The phase that I have been dreading was mentioned today during a conversation between Allison and Dr. Bebin.................... Ketogenic diet

Ok We need all of you Keto experts to weigh in on this one ok??

I want to hear the good, the bad, and the ugly of it. If you have lived through the ketogenic diet then we want to hear from you.

Other changes include going back UP on his Keppra. Thats right, we were on our way down because of some " rage" issues the med was causing ( by the way, we have seen a HUGE change in his mood since we started coming down) and now we say good bye to happy Dawson and usher back in the Kepprage Monster. Now aint that just grand. I hate Keppra. It would be different if he was a seizure free raging monster. But to be in that bad of mood on the stuff,and still be having seizures,l just doesn't fit very well.

We are also going up on the Lamictal to see what that will do. In the mean time, Seizures continue to worsen. Not only in numbers but in how hard they are.... ugg makes me sick.

Please continue your prayers for Dawson. We appreciate it so much!!

We love you

Jeff and Allison

Quick update

Our little corner of the woods has been busy as usual. Kiddos going back to school, life stuff, home stuff, seizure counting stuff, ect ect

Dawson is doing really well. We are slowly coming off the Keppra and already I can tell that he is in a better mood for the most part. He still has these little outburst but nothing as bad as it was.

Seizure count still about the same. He has good days and bad days. on a good day he will have about 20 or so on a bad day... 100 plus. We hate bad days!! As a matter of fact we hate the good days too because he is still having them. But We know God has a plan, and we are so honored to be part of it!!!

So here's the cool thing... All these seizures, and there is still no slowing him down. As a matter of fact this week he has had a language burst. Meaning he has started saying all kinds of new words. Some of the words he is saying is his own variation of that word, but he knows what hes trying to say, and we also know for the most part what hes talking about. The important thing is that he IS communicating.

AND.. as funny as it sounds. Last night ( and again today) he counted to three. We were eating Skittles and he pulled them aside one at a time and did " one, two, three" Allison and I just looked at each other and were like.. Did he really just do that??

So even though seizures are still abundant, God continues to show us just how truly amazing he really is.

Thank you for your prayers!! We want these seizures to stop again and we remain faithful in the thought that once again Dawson will be free.

Our love goes out to all of you.

Jeff and Allison

A pretty good week

Hope everybody is having a great weekend!!

Didn't do any post last week because there just wasn't anything note worthy going on around here. Pretty much the same ole same old. Seizures have been about the same, and sometimes worse. In the beginning of a cluster the first few can be pretty hard and then they will taper off to litte ones. Not that one seizure is better or worse than the next,but its harder to watch him have the harder ones.

We spoke to his Neuro and we told her we were ready to pull the plug on the Keppra.

I know, and Ive said it before, he is defiantly going through some " I'm almost two" and some
" I'm all boy" stuff right now, BUT every time we increase his dosage of Keppra, for about two days, he is a Jeckyll and Hyde monster!!

If the Keppra was helping, then I could most defiantly see dealing with the latter, But the Keppra is doing nothing so there is no sense in dumping this monster juice down him.

So the plan for now is to slowly ween off the Keppra and up the dosage of Lamictal. The only bad side effect of Lamictal............... A rash can develop that could kill him.... NICE!!!

Gee Whiz, cant we make a seizure drug without devastating side effects???

I mean this is what these drugs have done to our summer thus far......

Because of the Topamax, he does not have the capability to cool him self off by sweating like everybody else does. So if he goes outside to play during the day it either has to be in a pool, or we have to have a garden hose nearby because he will overheat in a heartbeat. Soooooo outside playtime for him in the Alabama heat is either 7: 00 am or 8:00 pm.

And if you go outside during those times around here all you are going to do anyway is feed the mosquitos!!!!!!!!!

So one would think, well maybe you guys could go places like a movie, or out to eat, or something like that.

WRONG!!

Please refer to the top portion of the page where I referred to Keppra.

We don't dare take Dawson out to eat right now. Its too big a risk

And now there is this Lamictal increase the this whole deadly rash thingy.

So it seems possible to me that at any time we could be dealing with a little boy who's face is red as a Popsicle because he cant cool himself, who is raging and running around looking for people's hair to pull, and has a rash.............. And is still having seizures

<>

Ok so that's kind of a sarcastic synopsis and a little over exaggerated but there is a lot of truth in there as well.

This morning Dawson has woken up and is being an absolute angle. We are eating bananas and watching The Wonder Pets and all is right in the world.

One last thing. I need to brag on Katelin!! As of last week, she is giving herself her own insulin injections. We are so proud of her and this major accomplishment. She is 7 years old, and is able to stick herself with a needle. This is a huge step for her and her ability to be self sufficient with Diabetes. Needless to say we all are very proud of her!!!

Ashlyn has really stepped up her game and is really doing great helping with the younger kiddos now. Last night she gave Madison and Dawson baths and got them ready for bed. A huge help for mommy and daddy!!

And as for Madison... Well she is the most beautiful, kindest, sweetest, funniest 4 year old I know!!

We thank you for your constant prayers for us as we battle seizures and meds and the devastating effects both of them have.

Our love to you all !!

Jeff and Allison