MERRY CHRISTMAS

From the Wade family to each and every one of you...

We want to wish you a Merry Christmas!!!!!!!!!

Another long overdue update

Things around here have been pretty uneventful and that's just the way we like it. We have been busy with the typical holiday stuff. Working, trying to figure out what to get the kids for Christmas. Oh and just recently ( last night) found the time to do some decorating around the house. I have been meaning to sit down here and write out something but just haven't had had anything much to say. Is there such a thing as bloggers block??

Dawson is doing really good. Seizure patterns are kinda weird the past couple of weeks. He was going a couple of days seizure free and then he'd have some in the middle of the night. We are still getting a day or two of seizure freedom here and there and as of a couple of days ago the only seizures he was having was upon waking in the middle of the night. Just in the past couple of days hes had a couple at odd times. Do you have any idea how bad I hate seizures?? Of course you do.. Allison and I are busy racking our brains trying to figure out something as to whats causing him to go days with none and why in the middle of the night hes having some but none after daytime naps???

The only thing we have been able to figure out is that we have No clue about the rhyme and reason of seizure activity!!

Dawson's mood has been all over the place. He had a run of about three days last week where he was just awful. Nothing would make him happy, temper tantrums, fits of throwing things, non stop crying and stuff like that. Just the other day he had a complete meltdown. I mean a true meltdown!!

After about 45 minutes we finally figured out what was bothering him so badly. Wanna know what it was?????

His Pacifier had a hole in it and it just wasn't sucking the way he wanted it to.. That's all it took to send him completely over the deep end.. Honestly we think he was more frustrated that he couldn't tell us what was bothering him so badly. And here we are trying to shove the stupid thing in his mouth to sooth him.... Go figure. We even took him to the Doctor just to make sure there was nothing physically wrong, such as an ear infection, that was putting him in this foul mood. And then all this leads to the same ole questions we've had for a while. Is it two year old tantrum stuff??? Is it seizure related?? Is it med related?? Is it possible abnormality of the right frontal lobe related??? Who knows.. We really really hope that whatever this is passes because it when he acts like hes been acting ,it really raises the stress level in the house..

The past couple of days have been much better for the most part but I understand Grampy had a pretty rough day with him today and tonight has been no picnic either.

So, seizures are still very much improved and we are so thankful for that.

Mood........... yeah well one out of two ain't bad I guess.

OH and check out this new fun thing Dawson is doing. I almost forgot to mention it... He is now started to refuse his seizure meds and B6 that he takes with his Keppra. What a fun little game that has turned out to be. Were running out of ways to trick him into taking it.

Please continue to pray for him. and for us :)

We love u all

Jeff and Allison

Super Human Strength

when your in prison, kisses from Madison makes things better.

Is it possible that a two year old can be THAT strong??

Heres the thing. Dawson,this weekend, has had a pretty bad diaper rash. So when changing his diaper, it takes TWO grown adults to pull off a diaper change. And even with that, its a struggle!! Its amazing how strong a two year old can be isn't it??

Maybe I'm just getting weaker in my old age.

Dawson is doing really good. We are still seeing two to three day seizure free periods and the clusters hes having are much much milder. We seem to be heading in a good direction.

Coincidentally ( thank goodness for spell check on this thing) over the past couple of weeks I have noticed some big changes in Dawson. He has always been very mobile. He hit normal milestones with rolling, sitting up, crawling and then walking. But over the past couple of weeks, I can tell a huge difference in his mobility. He's running, and I'm not talking that toddler straight leg-ged running, but knees bending kind of FAST running. ( bad news for Madison!!)

Hes walking backwards very easily, he spins in circles, hes able to negotiate steps unassisted, and last night he was jumping off this ledge ( about a foot high), and hitting the ground running.

Shame on me for not bringing this kind of stuff up. We have always celebrated victories like this because as most of you already know, when you have this type of seizure disorder, this kind of stuff is HUGE.

His speech is really improving now as well. Last night, somebody said " Thank You" and to which Dawson easily replied " Welcome" and he understands EVERYTHING you say to him. Its so awesome to watch him really " get it"

God finds a way, on a regular basis, to remind us what a miracle Dawson is. We continue to find that there is peace and grace and celebration on the other side of every fiery battle we face. I am SO glad we are on his team!!

Speaking of team....... ROLL TIDE ( sorry, had to get that out there)

Pictures are of some random things. ( Our fun little 192 hour VEEG we had, and some Thanksgiving family time)

God bless and we love u all

Jeff and Allison

Happy Birthday

Today, the littlest of my angels turned 5. It seems as though that should not be possible that she is 5 years old already. I guess the time has gone so fast because the past couple of years
( even though we purposely try not to let this happen) her little world has been overshadowed by seizures and diabetes. But this little girl is so special. If you were to spend only a few moments with Madison you would automatically be in love. There is no way you could stop yourself. This little child, without doubt, holds my heart in her hands.

So Happy Birthday to the smartest, wittiest, happiest, funniest,and most special 5 year old I have ever known!! I could never express with words how proud of her I am.

BTW...... Just a little side note on Mr. Dawson........

Today is Day 3 with no seizures!!

Our love to all

Jeff and Allison

Long overdue post

I really wanted to do a Thanksgiving post, and like most people, talk about all the many things that we have to be thankful for. I really did. Buuuttt

We were so busy with working, having all 4 kids at home, plus family visiting ( Thank you Prattville Wade's for coming to visit for the week!!) that literally there was just no time. It was just very nice everybody being together for the week.

Ill go backwards to the Dr visit this past Monday and go from there. The visit in itself was a little more uneventful than I was hoping for. I was all geared up and anticipating a lot of discussion from his Neuro to us regarding the recent MRI and PET and VEEG. Come to find out she really didn't have that much to say about it. She feels that maybe there is something there but that it is very subtle and she, being on the conservative side, really wanted to to talk about things like meds and diets and swerved away from conversations that had to do with things like brain abnormalities, and surgery options, and cool stuff like that. I think theres something small there but right now in this very moment, because Dawson is doing so well, surgery is just not a good option for Dawson and therefor why talk about it just yet, seemed to be her take on the whole thing.

Allison was thrilled that if there is something wrong in his brain that's it is very subtle. My take is that if there IS something there, and its causing seizures, but its so small that nobody will take it seriously... well thats really not such a good thing... Anyway.. time will take care of all that and it will work out just exactly as its supposed to.

Afterwards we met with the Dietitian and talked for close to an hour about starting the Modified Atkins Diet. Really fun stuff there. Dawson and I sat in the floor and played and I really have no idea what they talked about. HA!

In the meantime, Dawson is doing really really good. We are still stringing together some seizure free days and the days he has clusters they are few in number and milder. No big ones thank God!!

Here's the funny thing about all this... He was two months old when he got his shots ( the same ones that I believe started this whole seizure stuff), had seizures for a little more than 6 months and then they all of a sudden started going away a little at a time until he was almost seizure free for a year. He gets more shots, starts having seizures again within 30 hours, has seizures for the exact amount of time and now all of a sudden they are starting to dwindle a little at a time....

I think I see a pattern here....

Well see, we are just so glad that today and these past couple of weeks, that seizures have been on the decline and we praise God for every seizure free day he has. Sorry for such a delay in posting. Keep praying for Dawson, God is still doing some very very big things here!!

Our love to all

Jeff and Allison

Back to normal

Since returning home we have fallen right back into our usual routine. Only problem is that Allison and I are still exhausted from the hospital stay. We got home that evening and the next morning it was back to work, trying to get the house back in order, needing to by groceries, trying to get a good start on the new Atkins Diet ( well talk about that in a moment) and now with all 4 kids together for the entire week it seems as though recuperation will have to wait until after Thanksgiving.

But I have no right to complain because were just glad to be home.

Still no big seizures to talk about( which makes me very happy) and we have a visit with his Neuro on Monday to discuss further all this new information from the hospital. Im very anxious
to hear what she says.

The good news is that , and I'm counting the hospital stay, were starting to string together some seizure free days here. Its been such a long time since Ive been able to say that and you have no idea how happy that makes us. The seizure monster seems to be sleeping, or at least napping, and we will take every moment and every day we can get.

There are so many people praying for Dawson right now and I know in my heart that has something to do with it too. We know first hand how powerful prayer is. We have seen God be faithful to us time and time again because of prayer.

There are so many different groups of people praying and I wish there was a way for me to show my gratitude for that but because of the magnitude of this, that is just impossible. But know that we love and appreciate every time you pray for him and for us. Its the greatest thing one can do for another.

As far as the Modified Atkins goes.... Well, Dawson is HUNGRY tonight. And keep in mind we have not met with the nutritionist yet ( doing that Monday as well) so were kinda winging it. We are finding that Dawson will eat some of the things we thought he wouldn't but it seems as though our struggle is going to come from him watching everybody else eat the things he used to be able to eat and he is not liking that very much. I don't blame him and it seems as though our eating lifestyle is going to have to change in order to get him through this.

SO. All in all, in our little corner of the world, things are going well. It seems as though Dawson is really enjoying being on only one seizure med instead of three. Were kinda happy about that too.

Again, thank you for your prayers and here's to hopefully some more seizure free days

Jeff and Allison

MRI & PET scan

Three pieces of the puzzle are needed. Piece one was the MRI. Piece two was the PET. Piece three was capturing the new seizure type(s) on EEG.

Well two out of three ain't bad I guess.

First of all let me say that we got so much information so quickly that Im sure some of what was being said to us didn't completely sink in. There is just no way to obtain that much information but let me give you the summary.

Both the PET and MRI show there is an abnormality in the right side of the brain. Although it be probably subtle, It was very obvious to us as she was showing us the images. And to be honest, it was somewhat heartbreaking for us to look at our son's " imperfect" brain.

The area of the brain that is effected is in the right frontal lobe. Not the entire frontal lobe but just a section of it. And its near the surface and not deep in the brain. The assumption is that this area is possibly giving him some problems as far as the seizures go.

Its important that I tell you that we have not spoken with his main Neuro as of yet and we are anxious to get her interpretation of this as well. This also helps explain some of Dawson's aggressive behavioral issues to some degree. I still think some of his issues are med related, and I also think some are just 2 year old little boy related, but this area of the brain affects decision making and behaviors as well.

BUT... it does give us a very good possible surgery option.

The plan is to continue to control seizures with meds and we are in the beginning stages of the Modified Atkins diet to gain better control as well.

From listening to the two neuros at UAB what i gather is that the spasms hes been having do not have a focal point according to the EEG, but these new seizures are suspect of this brain abnormality. I think personally, his spasms do originate from this area as his left arm tends to fling up more than the right but hey what do I know?? Im just a dad right??

I also remember during one of his BIG seizures at Grampy's house that for about 45 min he had his left fist clenched while the right one remained relaxed which also points to right side brain problem. And I ALSO remember while he was an infant his Neuro being concerned that he wasn't using the left hand near as well as the right which points to right side brain problem.

Obviously we will know more as the days go by and we will be making the trip over to Huntsville this coming Monday to discuss this further with his Neurologist.

We went into this wanting answers and we certainly praise God for the answers we have so far. To be there that long, and for him to be hooked up that long, and then only to come home with no answers would have been even more heartbreaking.

I can't quite put into words yet what I really feel about all this. I think a lot depends on how this next year goes for him. Cutting my sons skull open and taking out part of his brain is the last thing I want right now. Simply because right now he is developing normally and hitting milestones. His background EEG is normal and the clusters of seizures occur only after sleeping.
Should things change ( and we all know they can in a heartbeat) and should he get worse then having surgery is a blessing and an option that we would take.

We have very mixed emotions right now and just aren't sure what to think about all this yet. Were ecstatic we have treatment options, were saddened that there is an abnormality in his brain, were concerned because we have no idea what tomorrow is going to be like..

This is why we trust God. I am not capable of leading us through this but HE is.

Continue to pray for us these next coming days as we sort out whats what. Pray for wisdom for his Neurologist that he will guide her in giving Dawson the best treatment options. Pray specifically for healing in this area of his brain.

Your prayers and support have been uplifting and to you prayer warriors out there we say a big thank you and we love you.

Jeff and Allison