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

Dawson Turns Blue!!!

This happens to be the coolest guy I know.......... ( besides me of course!!) HA!!

SOOOOOO..... Yesterday evening Allison, Dawson and Madison were all in the shower ( I guess its easier to do it that way???) Afterwards Dawson got out and he was trying to get to his Ma Ma and she was just not able to pick him up right then and there. So I picked him up and he did one of those cries that just took his breath away. Now, he has done this before, even to the point his lips kinda start to turn a bluish color BUT I had never seen ANYTHING like this before. His lips turned from purple to blue, his whole face turned blue and he just couldn't breathe. Allison is screaming at me " Is he OK?? Is he OK??" I'm holding him and I don't know what to do so I start kinda smacking him on his back like hes a choking victim or something. To be completely honest......

Im starting to freak out a bit, because he is stuck in the middle of a cry and just wont breathe...

After what seems like forever.............

He passes out!!!! I mean completely out. He just went limp in my arms and now we are really freaking out. This is my 4th kid and I have never seen this before. So what do I do?? I lay him on the bed and start smacking him on the back again....

Now upon passing out, he did start breathing again but my goodness... Talk about a scare. We did learn one thing from this..

I Can not be counted on during a medical emergency. My answer seems to be to just smack you on the back a lot until you've just completely passed out.

He is doing much better now and we both hope and pray we NEVER see anything like that again. I know the story is kinda funny now but it was really really scary.

Seizures still about the same. I absolutely hate hate hate starting my day by waking up and watching him have seizures. We have a Neuro visit lined up July 6th and I'm kinda thinking one of those 24hr EEG that we all just love, will be on the horizon.

Tonight Dawson is walking around with his radio singing and clapping and stomping around to the song " If your happy and you know it." so all is right in the world tonight. We thank you for your constant prayers and support.

Our love to all

Jeff and Allison

Pics and Video

Ok, so it appears as though we have no clothes for Dawson since he is half naked in most of these pics and videos.. First of all it has been soooooooo hot here. The temp the past 10 days has been anywhere from 94 to 97 degrees ,and with the good ole Alabama humidity, the heat index has been around 107. So with that being said, and the fact that Dawson takes Topamax, well we don't put him in clothes unless we have to because he just gets so hot.



Not much change in the seizures which is kinda disappointing but other than that, were hanging in there.



Anyway its been a while since weve posted any pics so we hope you guys enjoy.







Because sometimes one Pacifier just isn't enough

Yep, Im T-R-O-U-B-L-E

Long overdue update

First of all my apologies for such a delay in posting an update. As it turns out, I am a man. And everybody knows that as a man, I cannot manage my time properly, nor do two things at one time So Allison made me sit down and do this while I had nothing to do........ HA!

The latest scoop on Dawson is, is that unfortunately, seizures continue. We almost made it one day without any yesterday but he woke up last night and had some. He had more this morning when we woke up, and he had some after naps today. YUK!!!!!

We are in a holding pattern of sorts on his Meds until we can get back to Huntsville to see his Neuro. We are scheduled to go July 6th and im guessing we will be trying something new, or adding something, or going up on something..... you know the game

Despite the seizures he is still doing really really well. He has been the sweetest little boy these past few weeks ( although Madison would definitely not agree!!) His language and communication skills continue to grow in leaps and bounds. He tells us when he needs changed ( No 1 and No 2 ) with sign and words. He has a big " HI" for us every time he sees us and we've been working on saying the name of animals as well as the sounds they make. Hes doing really well with these things. Dawson continues to amaze us and just as before, it seems hes not going to let seizures stand in the way of doing or saying what he wants to.

The past few weeks have been pretty rocky for us. We are left with more questions than answers ( something I don't deal with well) and I have to admit my attitude has been less than what it needs to be concerning the return of seizures.

BUT............................

Our faith is strong and we are now more than ready for whatever lies ahead. God is once again stirring our hearts and moving us in the direction that he wants us to be in. I have been reminded recently that having faith in God during good times is the easy part. We are learning how to trust him even though we don't understand what hes doing. All I know is that he IS DOING and that's good enough for me.

Thank you so much for those who have been praying for Dawson and for us. It gives us great peace and we are very thankful to each one of you.

Our love to all.

Jeff and Allison

seizures galore

Just wanted to give a quick update and ask for prayers. Dawson is still doing really good but the seizures are getting more numerous and harder. When the seizures returned weeks ago, they were so mild that there is hardly any way you could see them. Of course WE could, but if you didn't know what to look for you would have missed them completely. Unfortunately now that is not the case. He is back to having seizures almost every time he wakes during the day or night.

I think he can feel them coming because when he wakes up he rolls up onto his stomach in kind of a ball, digs at his eyes, and then he will start to have seizures. This morning he and i woke up at the same time and he was already in " seizure position" and we were kind of laying face to face. It broke my heart as I laid there and watched him have seizure after seizure. I quit counting at 30 because it was just too painful for me to watch. I couldn't help but wonder, What is he going through? Do they hurt? how does it feel? and of course the proverbial WHY?????


So we once again ask for prayer as we seek seizure freedom for this guy. We did talk to his neuro today and right now the order is to continue going up on his Lamictal and stay the same on the Topamax for now.

The good news is that he continues to do really well. He has been in a really great mood all week. He is eating really well. He runs around the house yelling and laughing and talking up a storm. We just really really need these stupid seizures to go away!!!

Our love to all

Jeff and Allison

Some Pics

some pics of the kids fishing and Dawson at the river.