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So far the weekend is going great. Dawson is in a great mood this evening ( which makes everything A-OK) It does the heart good to see him when hes in his happy moods. He is so funny!!

Ashlyn and Katelin ended their two week visit today and we have once again gone from 6 back to 4. Yuk I hate it when they are not here with me.

Katelin's diabetes is doing ok as well. Her b/s numbers have been really good most of the day with the exception of her bed time check. We talked to the folks at Vanderbilt this afternoon and we are increasing her insulin dosages a little with supper in hopes that this will remedy those high bedtime numbers. She, as always, continues to be brave and refuses to let Diabetes stand in her way of doing the things she wants to do.

Dawson too is not letting these seizures get him down to much these days either. He continues to grow and learn and run and talk. All the things that we want our children to do he is doing. His fine and gross motor skills are fine and the only area that we are not seeing a huge improvement is his speech. He IS improving, just not at the same rate he was before the return of the seizures. ( This is strictly my opinion by the way.)

It is obvious he does understand everything we say, and can follow instructions from us to him to the letter. I kinda felt like the last few posts seemed to leave an impression that he was not doing well. Don't get me wrong, the seizures suck and we hate them with a passion. It breaks out hearts to watch this beautiful little boy of ours have seizures, BUT, God is still doing some wonderful and amazing things with Dawson. Despite the seizures, Dawson continues to thrive. How he is is tomorrow is not up to us anyway. We put him in God's hands in the very beginning when he was only two months old, and he remains there today. That's the joy of God being in control right?? If he is in control, then what in the world do I have to worry about anyway!!

Your prayers and kind words have and continue to help us in so many ways. We thank you and Love you all

Jeff and Allison

Good days / bad days

Generally speaking our days with Dawson have been some what better. His mood is a little better but will still have some outburst from time to time. We have started a B6 therapy to go along with the Keppra to help with the fussiness and rage outburst.

I don't blame the Keppra for all of it. I know some if it is the Keppra, but I also think some of it is that he IS getting close to 2 years old, and he IS a rough and tumble rambunctious little boy who is defiantly going to test the limits. AND if thats not enough he is cutting some more back molars.


The Keppra seems to be helping SOME with his seizures. Typically, when we increase his dose we will see them taper and even some days disappear. But usually after 24-36 hours the seizure monster will rear its ugly head yet again. So I'm thinking the combo of Topamax, Lamictal, Keppra, and B6 is not the answer.

I know we have to stay the course and give the current meds their chance to work but I am already ready to move on to something else. I know, I can be so impatient right??

I sure do miss the good ole days of counting seizure free days. Those were so much fun. I do however feel a God given peace that we will have our chance to count not only seizure free days, but months and years as well.

Your prayers and support certainly help us down that road and we thank you so much for that.

We love you all

Jeff and Allison

Kepprage????

Its hard to tell, but ever since we started increasing his Keppra doses, Dawson seems to be having some " rage" issues. Has anybody else noticed their child acting like some demon possessed monster while on Keppra???????

Ok well the word " rage" may be a little strong but he seems to be having some problems figuring out what to do when he doesn't get his way.

Last night Dawson had one of his little episodes. Since mommy was the only one in sight... Well thats who he lashed out at. He was unhappy to begin with because he didn't get his nap out. Sooooo he felt the answer was to slap and hit Allison and then grab a hand full of her hair and pull it....

Obviously that was the wrong answer.

So we are working on some " behavior modification techniques" with Dawson in hopes that he will remember that physically attacking someone ( especially your mom) means that unpleasant times are on the way for him.

He had troubles going to sleep as well last night. For some reason he wanted to play " Look at me I'm a Mexican Jumping bean" and after some more " behavior modification techniques" he finally settled down and went to sleep.

Whew, Dawson is turning out to be quite the handful. From somebody who is raising 3 girls, all this mean, rambunctious boy stuff is quite different.

So far, the increase in meds has not effected seizure frequency and I'm already wondering what the next step is going to be. In the meantime we continue to thank God for his goodness and grace that he continues to shower us with.

Our love to all

Jeff and Allison

House full of kids

Ashlyn and Katelin are here with us for the next two weeks. We are so happy they are here for an extended visit. Going from two back to four is an adjustment though... whew!!!

Katelin is still doing really good. Her numbers are staying mostly in check but needs insulin with every meal. I know there is a lot of work and research going on in the diabetic Field and I really pray they find a cure for this thing in her lifetime. As always, she is handling things like a trooper.

No change in seizures for Dawson. He is still having a lot, especially during the evening and nighttime hours. His mood for the most part is still really good although when its bad..... ITS REALLY BAD!! He has definite moments of frustration and usually Madison bears the brunt of the physical end of it. Sometimes if he is upset, he will search her out and the hair pulling and pinching will begin. Today has been a good day. It takes him a while to wake up from sleep and naps but once hes been up for a while hes usually pretty good.

So here's a pretty cool thing http://seizuretracker.com/ Our Neuro hooked us up with this website and we love it. It's a great way to track seizures, meds, different events, appointments, so on and so forth. If you haven't seen it, its worth a look. And its so easy that even I can do it. HA!!

Between the kids and the garden, we have been running wide open as usual. We've been busy canning, making salsa, making pickles, putting up corn, and trying to figure out how many different ways there are to eat tomatoes.... LOVE EM!!!!

We hope you all have a great weekend. We are so blessed to have you as friends!!

Neuro Visit

This afternoon we made the trip over to Huntsville for a Neuro visit. Dawson was HORRIBLE!!!!

He took a little nap on the drive over and I thought with a nap under our belts that we would be Golden. w-r-o-n-g

In the waiting room he was fine.

There was no warning at all.

No warning that within moments of them calling his name that he was going to unleash holy terror upon the entire Neurological clinic.

We walked down the hall and got to the station where we take blood pressure and get weighed. Hes done it time and time before like a champ. Not today

Today my friends, Dawson decided from the get go that he did not want to be there and had no problem letting everybody know that he didn't want to be there.

THE ENTIRE TIME!!

He screamed, he cried, he fussed, he yelled bye bye 1000 times and then he would start back at the beginning again. Meanwhile we are trying to have a very serious important conversation with his Neuro ( in between screams)

Allison had to take him out of the room and walk with him up and down the halls while I talked and then I would take him and travel the halls so Allison could talk to the Dr.

Even that didn't help. He screamed the entire time.

You know the kid in the Doctors office that is causing such a ruckus that you can't wait for them to leave??? Come on , you know the one I'm talking about....

Well that was Dawson today. We were there for an hour and a half and i KNOW they were so glad to see us leave.

The last visit he had a bunch of needle pricks and blood work done and I think he remembered all that. It even continued on the way home. It took about an hour of couch time with mommy before he was able to sort himself out and get back to normal again.

The visit was a little disheartening. Dr Bebin, who is one of the most awesome Doctors Ive ever met, seemed to be at her witts end as to what to do next. We have tested him for every possible genetic and metabolic abnormality that is currently possible and they have all come back negative.

Lots of blood work??? check
MRI?? check
PET scan?? check
Muscle Biopsy check
Genetic Specialist?? check

She feels that it is so important to find the source of whats causing his seizures. ( and I agree) The more you know about whats causing them, the better you can taylor a treatment plan to get them stopped.

She suggested going back to Atlanta to see the same Genetic Specialist that did the muscle biopsy just to make sure there is nothing were missing. To me that says-- I'm not sure what else to do--

For now we are going to add Keppra into the mix of his current meds. He has done the Keppra thing before but at a low dose. So hopefully we will see some changes for the good with this combo of meds.

So today was a long one but everybody is good this evening. Thanks so much for the support and prayers you have shown.

Give our love to all

Jeff and Allison

Happy 4th

The plan was to enjoy a nice 3 day weekend. The plan today was to have some fun with the kiddos. We were going swimming with neighbors this morning and then make a short drive to spend the afternoon swimming with friends. So, as we like to say in the south............

" It ain't happenin"

As our luck would have it, Dawson woke this morning with a fever and Madison has been complaining for a couple of days of an ulcer in her mouth. Upon further investigation, we not only found one but SEVERAL ulcers all over her mouth and tongue. Bless her because I know those things gotta hurt.

I took her to the Dr. and it appears its one of those summer viral things that have been helped along by all the kiddos in Vacation Bible School. The Dr also said that fever is present in the smaller kids before the ulcers show up ( which would help explain why Dawson is running a fever today) sooooooooooooooo.... Another Holiday weekend couped up with highly contagious kiddos.

Plans sure do change fast when you have kids don't they??? One minute you think your going to be doing this only to find out the kids have other plans for you...

BLAH!!

Despite the fever, Dawson has been in a great mood today. And despite all those blisters in her mouth, Madison seems to be doing pretty well herself. Now if we can only get rid of those stupid seizures.

On the way to the Dr. this morning the following conversation took place between me and Madison....

and keep in mind shes only 4....

" Daddy, how many bad words are there? 20 or 27?"

ME.. " I don't know Madison, what are a few of them that you know?"

" Well I know we don't call people stupid, and I know we don't call people dumb"

ME " Yes that's right"

" Daddy? what do I do if somebody calls me a Dummy head?"

ME " Well what do you think the right thing to do is?"

After a lot of thought and a long pause from Madison she says....

" I think I should punch them in the face!!"

OK so where does she get this from?? because that's a little concerning. HA!

So I taught her the little sticks and stones can break my bones rhyme, and hopefully she will remember to use that as plan A and skip the punching of the faces portion of her original solution.

Seizures still the same. Maybe starting to see some harder ones coming out which is a little disheartening. Allison woke up at 3 this morning with him and she said he had a cluster with about 40 in it. YUK

Keep those prayers coming. We love you guys

Jeff and Allison