Some Christmas Pics ( I know Im late on these)

Look out Ladies!!

The Pig trough

Imaging that, Dawson climbing on something !!

Black Lab Puppy for Christmas

ummmmmmmmm???

Horsey Rides

Bitten??

Saturday evening during a Christmas dinner we were having over here, I noticed a small little purple mark on Dawson's stomach right about where the waistband of his diaper is. Didn't think too much about it and actually kind of thought he fell down somewhere and got a little bruise or something. Later on that evening we noticed the purple dot had two little fang looking marks and now was accompanied by a red circle around the bruise about the size of a dime. Then the redness covered about the size of a quarter and then the size of a half dollar. Now we realize that obviously were looking at a bite mark of some kind.

My worst fear ( because they are in our area, and we have seen a few before) was that he was bitten by a Brown Recluse Spider. http://www.your-inner-voice.com/brownreclusespider.html
If you are squeemish please do not click on this link!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! It not only shows you what the spider looks like, but it shows what the venom is capable of doing.

I myself have been bitten before but luckily I was spared some of the horrific effects the venom can cause. His bite certainly looked like some of the bites I have seen on the Internet. So Sunday we call his Pediatrician and get an appointment to have him looked at. His Doctor thankfully did not think it was a Brown Recluse bite because he said usually within 12 to 24 hours the wound is already starting to show signs of flesh being destroyed. He said he was obviously bitten by something but theres no telling what. He was concerned the bite was turning into a staff infection so we were given some good antibiotics and sent on our way with the hopes that everything would be ok.

Tonight there is still a large red inflamed area around the bite mark ( about the size of a child's hand) but it seems to be better than yesterday and not so inflamed looking. Hopefully he will continue to get better!!

AND.... his seizures have gotten a little worse again too. Not sure if its because his body is fighting off this infection or what but we are not seeing the one to two day seizure free spells anymore. His clusters of spasms over the last few days have once again increased in numbers and intensity a little. UGGG!

But on the bright side, despite the seizures, over the past couple of days his talking skills have taken off again. He is saying all kinds of new stuff just right out of the clear blue. God always finds a way to show us how amazing he is. Its during the harder times that his hand in this becomes even more prominant to us.

This week is a busy one. Ashlyn and Katelin are here for the week ( Oh how I love it when we are all together!!) and on Wednesday we will be travelling to Vanderbilt because Katelin is getting an insulin pump. HOORAY!!!! I am so happy for her and this opportunity she has to better manage her insulin without having to get multiple shots a day. She is such an awesome kid!!

So were still moving right along ( at warp speed it seems most of the time.) With Seizures, Diabetes, and wicked spider bites going on, hopefully the rest of the week will be smooth sailing.

Thank you for your thoughts and prayers in these areas.

Love to all

Jeff and Allison

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

Oh yeah were home

Just arrived home a short while ago. PET scan went well and they have already studied and gone over the results of both the PET and MRI..

Tons of info to cover as to what they found...

Way to tired and way to emotionally drained to cover it tonight. Ill post tomorrow about the results.

We are all very glad to be home again!!

Jeff and Allison

PET underway

As I type this Dawson is having his PET scan done. I hate the anesthesia part. Watching him go to sleep in that manner has never sat well on my stomach. While sleeping we were able to participate in a Phenome/Genome study. They are trying to find genetic reasons for cryptogenic Infantile Spasms by doing this global study. Simple blood draws and some questions are all that were required. My only requisition was that Dawson's blood be drawn while under anesthesia.

I told them I refuse to stick, poke, prod, or do anything else to him medically related while he was awake. Enough is enough right??

We are anxious to see him to make sure hes ok first of all... But when he gets back they are taking all this stuff off his head and we will be headed home as long as he wakes up ok.

Funny thing, Dawson hasn't had a seizure since Friday afternoon....... Go figure that one out??

Thanks for your prayers and support this week.

Love to all

Jeff and Allison

Sunday

Boy are hospitals quiet on the weekends!! I never realized that before.

So heres the info on us for the past 24

Seizures meds back on ( Keppra ) accompanied by B6 to help with the rage issues he has on Keppra.

Dawson and ourselves are Exhausted and cant wait to get back home

Dawson,as of yesterday, started having spells and acting like a crazy person. I'm sure its a combo of different things making him act that way but hes started biting himself, and last night in order to go to sleep he had to hold a box of Teddy Grahms in one hand and a bottle of water in the other... ????

I think the biggest contributor to this is probably being completely off of seizure meds. I can't even begin to imagine what kind of effect that has to have on the brain and his moods. When hes fine, hes really fine. When hes not...... well, hes REALLY not. We hope that when we get back home in his own environment that he will settle back down again.

All things considered, he has done extremely well. Being hooked up to a Video EEG for 7 days has got to be hard. I mean i know after a while those leads have to become uncomfortable and the itching has to be pretty bad too after that amount of time.

We can't wait to give him a real bath!!

While here, I have learned a lot of new things that I just dont think would be fair to keep to myself. So I will share a few of them with you.......

Sometimes people stand way to close to you while waiting on an elevator ( scary close!!)

Wagon rides cure everything

Eating pizza, mack & cheese, and french fries everyday wreaks havock on your digestive system

( I can't imagine what my cholesterol numbers are right now)

Ronald McDonald houses are awesome!!

7 days of Spongebob Squarepants has a way of changing a man.

The divorce rate for couples staying in a hospital for 7 days has to be around 98%

( I'm kidding about that one, Allison and I have really needed each other this week and truth be told this has made us stronger!!)

Nurses stations at shift changes are the loudest places in a hospital.

Even if your 6'4 and weigh 215 lbs you CAN fit in a hospital crib. ( not very comfortable though)

And.....

No matter how many times hospital staff tells you that your child sleeping with you on an air mattress is against hospital policy and cant do it, IF you completely ignore them, and do it anyways, they will eventually quit telling you you cant do it.

7 days of Spongebob Squarepants REALLY has a way of changing a man!!

So our week is almost over, Dawson is acting like tonight is going to be another long one, and please remember him tomorrow because his PET scan is being done. They are supposed to put him to sleep and do it around 1:00, then unhook him from the VEEG after he wakes up, and then we are getting out of Dodge.

Did I mention how 7 days of Spongebob Squarepants has a way of changing a man??

Our love to all

Jeff and Allison

Saturday

First of all a big thank you to the Wade Grandparents who drove down here Friday Morning and stayed till Saturday evening. Allison and I were able to get away a few times and even left the hospital to have dinner last night. They brought Madison down with them and she is staying here with us until we go home Monday. Its nice having family here and Dawson was so glad to see everybody ( after the initial shock)

When the grandparents and Madison walked in the room yesterday morning, Dawson looked at all of them and then started screaming and crying. I think it literally overstimulated him to the point where he didnt know what to do except cry.

And thanks to the grandparents, I was able to leave the hospital today, drive to Florence, work and drive back this afternoon. My job has been piling up for 6 days now and it was a relief to go get some things caught up.

Thanks also to Grampy and Adam who came yesterday evening to visit as well. Dawson enjoyed some good times with Grampy and the whole day just seem to go a lot smoother with extra hands and family support.

Dawson has been in great spirits today and for the most part been happy to sit in his crib and play. I really think having family around has eased his spirits a bit.

Tomorrow we restart Keppra and his PET scan will be Monday at 1:00

Heres to a weekend in the hospital

Jeff and Madison

Its Friday ( I think)

Dawson is still doing really well. And unfortunately so are his seizures. No big one and his spasms type seizures are still on the decline despite completely being off his meds.

His Neuro was here today and said its really not all that unusual for this to happen. Still lots of talk back and forth between the Neuros about what is what, and what to do next.

We are starting the Modified Atkins diet this weekend while we are here and if we don't see any better seizure control we will move over to the Ketogenic Diet. She is going to keep him off of the Topomax and Lamictal and put him back on a therapeutic dose of Keppra. So 3 drugs down to 1 is a good thing for us ( and him)

We have already noticed that 2 days off the Topomax and we see small differences in him

( good differences)

So were still here, still waiting

Jeff and Allison

Where are the stinkin seizures???

Dawson's seizures still remain at bay. Have you ever heard of such??? Take a seizure ridden kid off his meds and his seizures get BETTER???? good grief.

I know that some seizure meds can make seizures worse if its the wrong med but these are meds hes been on since the beginning. The same meds that brought him seizure freedom for close to a year. So im not really buying into that thought very much. And I know that if left off the meds long enough his seizures will continue to worsen again. Its just weird that were here trying to catch a big seizure on VEEG and the stinkin things get better.

Dawson FINALLY took a long long nap this afternoon. Close to 2 hours. Its the first time hes been able to settle down long enough to do so. This morning started off kind of rough but as the day has gone on he seems to have settled down a little more to this new environment. All in all, the day really hasn't been that bad, just LONG time seems to creep along slower than usual in places like this.

AND...

We were given the gift of being able to unhook from the monitor for 30 min at a time for wagon rides through the hospital. Weve gotten to go out twice today and what a blessing. Dawson LOVES the wagon ride and its a great break for him.

AND.....

My parents are coming down tomorrow and they are bringing sweet little Doodle Bug.

( Madison) Dawson is absolutely going to flip out when he sees her. Those two are quite the pair and I know it will make tomorrow a much better day for him. They are going to stay and spend the night. The extra pair of hands will be helpful as well.

So here we still are. All dressed up and no where to go. Waiting on the monster to show

STUPID SEIZURES

Love to all

Jeff and Allison

Morning stuff

OK so this kid and his seizures are just weird!! Here's the scoop, as most of you know they have all but cold turkey taken away his seizure meds. He is on 12.5 g of Lamictal and that's it. If it weren't for that whole "deadly rash" thing, he would be off of that as well.

Last night he has ONE stinkin little cluster. ONE!!! were here for the BIG ONE, take away his meds and he does this?? Oh this seizure monster is a tricky one. It is hiding and playing games because it knows now its time in my sons brain is limited. We see you in there though!!!

By the way, what is the record for being hooked up to a video EEG monitor?? Anybody know??

because as it stands, they want him hooked up until he has his PET Monday and that would make 7 days. Is that a record?? just curious.

On a different note, Today my oldest daughter Ashlyn turns 11. One of the hardest things about being a parent is having to make choices like this. Although I really don't have much of a choice, being here for my son but having to miss my daughters birthday really sucks for me. I have tried multiple ways to try to be in two places at one time and I have yet to find a good way to do it.

Happy Birthday Ashlyn! I love you more than you could ever know. Im sorry I cant see you on your birthday but I know that you understand why, and because of that I am very very proud of you!!

This morning Dawson woke up pretty happy, but as I type this, the good vibe is starting to fade away as I think he realizes we wont be going home today either.

Thank you Megan and Michelle for stopping by yesterday. Dawson's world was completely lit up while you were here and we thank you so much for that!!!

Ill post again after the neuros make their rounds. Were interested in hearing what they have to say this morning. Thank you all for your kind words and support. Lets face it, us being here, and doing these test are not the end of the world. Its inconvenient and uncomfortable yes, but there are much worse things than this going on. With that being said, you taking the time to say a word or two to help us and more importantly your prayers means the world to us.

THANK YOU!!

Love u all!!

Jeff and Allison

newest info

Dawsons neuro from Huntsville was in this evening and had the following news...

According to the MRI, There is a possiblility they found an abnormality of the brain. I was busy tending to Dawson and Allison went to the Ronald Mcdonald house to shower up so I wont try to go into too much detail until I know my facts are straight. BUT>......

Its in an area of the brain that doesn't involve speech or motor skills which is why we are not seeing any delays in his development in these areas. I think she said its in an area of the brain that controls decision making and judgment but once again please dont quote me on that.

We are blessed to have 3 Neurologist working on his case right now and we are also cursed by having 3 Neurologist working on his case right now. One sees something, the other not so sure, and getting all 3 to come to one conclusion may be difficult.

But we are very excited that Dawson might be a possible candidate for surgery and even more excited that it may possibly be only a small area that would have to be removed.. The thought still scares the bejiggles out of me..

The plan???? Well that's not so simple

They originally wanted to do a PET scan a few weeks ago but then decided against it but now with the new MRI results they want to go ahead and do one. MONDAY!!! which means they want us to stay here inpatient until then. ok we weren't quite ready for that bit of lovely news.

In the meantime they want to gather as much EEG info ( still waiting on the BIG one) and compare the MRI, PET, and EEG together to make sure they are correct in what they are seeing on the MRI.

I really dont know if we can survive here that long...

One of the Neuro's said this morning that while hes awake his EEG looks normal. The only time his EEG is not normal is during a cluster of seizures. We were thrilled about hearing that. So right now we are in a transitional period to say the least. Still lots of work to be done but if at the end of the line we come to a place where surgery is an option then I say it will all be worth it.

In the meantime????

Ketogenic or Modified Atkins is in the VERY near future for us. The reason being that if Dawson is truly a surgical candidate, then it could be as long as 3 months from now before the surgery could be preformed.

Lots of prayers please, this is turning out to be a much longer week than expected. Dawson is extremely restless and Im really starting to feel bad for him.

Our love to all

Jeff

Day 3

Last night Dawson was very restless. Lots of squirming around and flipping around. Im guessing it has something to do with taking him off his seizure meds. Needless to say, he had TONS of spasms type seizures last night. way way way more than usual which tells me that his current meds are having some type of "control" over his seizures.

But..

No big one

sigh!!

Dawson is starting to grow really restless and is tired of being tethered to this machine. He also is tired of being stuck in this room. He wants to be free to play and run around and I'm afraid we are rapidly approaching the threshold of what he can tolerate. Hes showing signs of snapping ha!

Today should be interesting. They are supposed to be making rounds around 10:00 this morning and well let you know what the Neuro says when he comes around

Jeff and Allison

The waiting game

Tonight finds us waiting on Dawson to have a big seizure. Doesn't that sound weird??

Allison and I were joking this afternoon about how much weve prayed for Dawson to stop having seizures and now here we are praying that he has one???? Its a good thing God knows exactly what we need because that could get confusing.

So we sit and we wait.

Dawson's neuro from Huntsville stopped by tonight to see him which was a surprise but we were glad to see her. She will be here tomorrow too, so we hope to talk more in depth about whats going on with our little guy.

They have decided to cut his meds some more tonight. He was on Keppra, Topamax, and Lamictal and as of tonight he is only taking a small dose of Lamictal. Kinda scary to cold turkey his meds like that but I trust they know what they are doing. They are as anxious to see one of these seizures as we are i think.

The good news is that Dawson has been in pretty good spirits for most of the day. Hes been pretty content to sit with us and watch videos with the occasional walking around the room. Its kinda like walking an untrained puppy on a short leash but were managing.

Pics... An EEG pic , and my dear niece Megan had a makeover. A big improvement dont ya think???

HA

Love you all

Jeff and Allison

Day 2

Ok so we survived night one. We credit this to a full size blow up mattress. Allison and Dawson slept much better on this than in those stupid chairs. And there is no way Dawson is sleeping in a hospital crib by himself.

So........ We completely rearranged our room to suit our needs and im sure the hospital staff here must think were crazy but we really don't care. Goal 1 is to make sure Dawson is as comfortable as possible. And.... since his seizures are sleep related, its pretty important that he actually goes to sleep in order to record seizures.

Speaking of which.

He has not had any of the big seizures as of this morning. Ever seen the Planet Earth series?

If so, I think this is kind of like catching that shark jumping out of the water to eat the seal. Timing and circumstances must be perfect to get that shot and I really hope we are able to catch a big seizure on EEG while were here. He did have his usual spasms early this morning and its good they can see those. BUT... We want the big one.

They have drastically reduced his seizure meds and hopefully that will bring our the monster.

So for now we wait, Dawson seems kind of restless this morning but we are glad he was able to sleep soundly last night.

Thanks for your continued thoughts and prayers

Jeff and Allison

MRI

Dawson is out of the MRI and everything there went smoothly. He went to sleep fine and woke up good. As a matter of fact he was acting kinda drunk there for a little bit.

He is right now just getting hooked up for his EEG and its not going well at all. Dawson has had a very very long day. Hes hungry, he's tired, and you can tell he hates being here. AND....

the lady doing the VEEG hookup....

happens to be the SLOWEST I have ever seen at this.

Dawson screamed bloody murder for the first 10 min and now hes going in and out of sleep. Hopefully she will finish sometime soon and maybe, just maybe, he can get some peaceful rest

I feel kinda bad for him. Hes been through a lot today and Im sure hes just wanting some mommy time.

We are still waiting on word on what to do with his meds. There has been talk of cold turkey stopping his meds while hes here???? ( A little concerning to me) but nobody has said for sure. Hard to get solid answers about anything in this place.

Will post again in the morning with some pictures.

Love to all

Jeff

Were here

We arrived at Children's Hospital this morning and the admission process was very smooth.

Dawson got his IV first thing and it went very smooth as well. He whimpered a little when she stuck him but after that not so much as a peep. He calmly laid there and watched her the entire time.

They will come in this afternoon to take him for his MRI and then hopefully they will hook him up for his VEEG while he is still asleep. I will post again when Dawson wakes up from anesthesia

Thanks so much for your prayers this week

Jeff

Childrens Hospital in the morning

Its amazing how fast everyone is growing up around here. Right before my very eyes and there is nothing I can do to slow it down or stop it. ( Even though I wish I could)

My goodness, Ashlyn is hardly a kid anymore !!!

sigh.....

Ok so tomorrow we head down to Children's for MRI and 3 day VEEG. Hopefully they will capture what then need early and we can come home but does it ever really work out that way???? Yeah, I didn't think so.

Ill post pics and info everyday because what else will I have to do right??

Lots of prayers please. We want this week to give us answers. Dawson had another one of those big nasty seizures yesterday morning when he woke up. Out of the three we have seen, this was the least severe of them, but still NO FUN!!

We love you

Jeff and Allison

Getting Ready

Our trip to Children's Hospital in Birmingham is looming ever closer. 5 days to be exact.

We are able to plan this trip a little better since its not spur of the moment and hopefully that planning will make our trip a little more comfortable..

Things like...

So you wont let Dawson sleep in a hospital bed with his mommy and instead you roll in a crib and expect him to sleep in that so guess what ?? Were bringing a very comfy blow up mattress for Dawson and mommy to sleep on kinda stuff....

We also found a very small backpack for Dawson to wear so we can put the box that all the wires are connected to inside the backpack so he can be a little more mobile kinda stuff.

To be honest, we are already kinda startin to get edgy because we know that week will be stressful. My biggest fear????

I know they want to reduce his meds to the p0int he will have one of those huge breakthrough seizures and im afraid that we will not be able to get back to the point where we are TODAY

See, things right now are pretty good, Yeah hes having spasms but for the most part we feel as though they are somewhat under control by the current medications that hes on. And by control, what I really mean is that his spasms and the time hes going to have them are somewhat predictable.

What I have learned over the past two years is that this whole med game is very finicky. There is no guarantee that if we reduce his meds and his seizures get worse that we will be able to get back to the level of " control " that we currently have.

And....

That is scary to me.

BUT....

Those big nasty seizures hes had recently are lurking somewhere. They are not predictable and that monster MUST be dealt with.

AND...

That is also where faith comes in. Faith that God is spinning us in this direction for some specific reason. Whatever it may be. To be honest it doesn't really even matter the reason. We handed this all to him 2 years ago and my only job is to follow. Which is exactly what I promised him I would do.

So pray for us as we stand on our faith. Most days, this is very hard and our ultimate goal is seizure freedom once again for Dawson.

Our love to all

Jeff and Allison

A string of good days

Just what the Dr. Ordered... A few days of normalcy.

Dawson's seizure have been better. And by better I mean no big gigantic seizures. Hes still having his usual spasms type seizures and even those have been a wee bit better as of late.

His mood is doing pretty good, as a matter of fact, its been much improved over the last few days as well. So we are relishing in these good days because we know how quickly things change when your dealing with seizures.

We were even able to get outside amongst the beautiful maple trees that are in full color and snap some pics of the kiddos without even as much as a fuss.... Pretty amazing.

So while the waters are calm we rest..

AND...


We thank God for the past few days of smooth sailing

We love you

Jeff and Allison

Some pics of recent hospital stay and some more pics from this weekend.

Dawson is still a little under the weather. Off and on again fever and he has a double ear infection with a cough accompanied by gobs of snot.. Hey it is what it is people.

Hes hanging in there pretty good but you can tell he doesn't feel all that well. I think hes just glad to be home.

Madison and Dawson are Roll Tide kids and I couldnt be prouder. Sorry Grampy, I know you had high hopes of them growing up Tennessee fans but I just can't let that happen.

Enjoy the pics

Like the wind

We have to be as flexible as the wind blows these days. On minute were fine, the next were not, then were home, then in Birmingham doing all this stuff...

the lastest wind dirction has brought us back home thank goodness.

The reason why is that first and formost, they want to see this new seizure type on EEG.

He has had two episodes in a two week time span so the odds of catching one just random is pretty slim. We are going back November 9th for 5 days where they will start to ween Dawson off of his meds and force the new seizure monster to rear his ugly head. Yeah thats right, We want to see what you look like so we will better know how to kill you!!

( obviously the hospital stay and the drive home has made me violent)

Also, Based on what they caught the last two days while we were there, It looks as though most of his seizure activity is coming off the right side of the brain. Soooooo With that being said, we will first thing when we get down there is do an MRI ( he hasn't had one since he was 3 months old) and they will also do a PET scan to see if maybe his seizures are coming from a centralized location and could possibly be a candidate for surgery........ Trying very hard not to go there in my mind yet because there is way too much unknown. Well cross that bridge when or when not we get there.

So we are home and the top priority for us tonight is rest. Dawson picked up some bug in the hospital because he is running a fever and coughing and green snot. So hopefully some Motrin and a good nights sleep will help cure that.

Thank you for all your prayers over the past couple of days. Continue to think of Dawson over the next coming weeks. We are kinda dreading the next visit although we know it will provide us with a lot of answered questions, and to a parent whos kid suffers from seizures, answers are as good as gold!!

We love you all

Jeff and Allison

Mornin Sunshine ( yeah Right)

Last night was a rough one. I dont know because I took the cowards way out and got a pretty good nights sleep at the Ronald McDonald House a couple of blocks over.. I came over early this morning and let her go over for some MUCH needed sleep. She said he did not sleep well at all.

Lots of wiggling around, twitches and stuff like that. Not necessarily seizure twitches but just weird stuff that kept him up all night. He is asleep right now and I hope he stays that way for a while. He NEEDS sleep. I have already run off two people this morning wanting to check vitals and stuff like that. There is no way im letting them wake him up until he is ready.

Hopefully today will be a better day. Thank you Prattville Wades for coming to visit. It was so good to see you guys!!! And thank you Carroll for your visits and all the stuff you brought us. You are truly a God send and a great friend!!

Looks like Dawson is starting to stir a little. Ill post again later

Jeff

All Hooked Up

They FINALLY came in around 1:00 and got him all hooked up. He had JUST finally fallen asleep when they showed up. Bunch of meanies

He is back asleep now and resting comfortably. I don't know a lot about these things but im watching his EEG while hes sleeping and it looks like an absolute mess.

I don't want him to have another one of those episodes, but in a way, while were here and all hooked up, i kinda do so we can at least have some resolve.

Well update again later.

Jeff

Rushed to UAB hospital

Yesterday afternoon around 2:00 Dawson had another really bad seizure. It presented itself kinda like the episode he had a couple of weekends ago. It hapened while he was at granny and grampy's house. He did quit breathing for a short while and had episodes of being limp along with being stiff and jerky at times. Afterwards he was really really sleepy of course and when he would rouse he was incredibly fussy and then would go right back to sleep. The concerning thing about all of this is that five hours later he was still very letharic. I called Dr. Bebin and she wanted him taken to our local hospital to make sure he was stable and then she wanted him transported by ambulance because she was concerned about him having another seizure on the way. And instead of waiting two weeks for our EEG here, she wants it done NOW. soooooo

Off to our local hospital Allison and Dawson went while I stayed behind and started packing for what is turnin out to be a long stay here.

At our local hospital he finally came back around and started acting like his old self again so we made the decision to drive him down here ourselves. I'm not really sure how much a 2 hour ambulance ride costs but I'm pretty sure I cant afford it. ( You guys know that we would have done that if it were necessary right??)

We safely arrived at UAB Children's at about 11:00 last night and had to be admitted through the ER which was a disastrous experience. We got the 24 year old male nurse who says to us...

" Sooooooo what brings you guys in tonight???" I thought OHHH BOY here we go. This is going to be a long evening. and as it turns out I was right.

We finally got admitted and up to our room at 2:30 AM. No bed for Dawson and everybody whos anybody knows that Dawson sleeps in the bed with his Mommy and there are no exceptions. Unfortunately it looks as though protocol will over rule us on this one and we are stuck with a crib and a very uncomfortable chair to sleep in for the time being.

So this morning they will come and do the hookup for a who knows how long video EEG. We are calling on our prayer warriors to please hit your knees and pray for Dawson. We hope this EEG will give light to these new developments and how to treat them. We will keep everybody posted throughout the day as things happen.

Thank you for your prayers.

We are at UAB Childrens hospital in Birmingham room 403 and will be moving to room 428 later on today if anybody needs to get ahold of us

We love you all

Jeff and Allison

Smoother Sailing

Once again, we are kinda back to where we were before last Saturday. I still find myself on pins and needles ( Especially when he wakes up from naps) because I'm so afraid hes going to have another one of those seizure episodes that sent emergency vehicles screaming to our house. It gets a little better with every day that passes but I don't think there will come a day that I wont think about that day. I guess in a way its kinda scarred me.

BUT......

Things have returned to a more normal pace and predictable seizure patterns. ( Although, Friday he had none.) Mood seems to be stabilizing a bit but we are still having some issues with hitting, biting, and hair pulling. We are using some " Behavior modification techniques" because weather or not its seizure or med related or whatever, he needs to know that kind of behavior is just not acceptable. Besides that, the kid is getting REALLY strong now and Madison, although fast, is pretty fragile.

I guess I need to quit harping on the mood thing so much because it kinda paints an inaccurate picture of Dawson. See, the other side of Dawson is an amazing one. He is a very tender hearted and sweet kid the other 95% of the time and we need to spend more time talking about that Dawson.

He is incredibly funny, social, and despite being plagued by numerous seizures each day he continues to thrive. The seizures started at 2 months old and they have yet to slow him down one bit. He talks, plays, runs, colors, loves to be read to, kicks and throws balls. He understands and follows directions when given simple tasks to do........

The thing is, statistically speaking, he is not supposed to be doing any of this stuff because Infantile Spasms is a Catastrophic form of epilepsy.. BUUUUT nobody has told Dawson this yet because he continues on everyday life as though nothing is wrong. And the fact is, If you were to watch Dawson for yourself, you would Never know anything was wrong with him at all.

It is a fact that Dawson has been touched by Jehovah Rapha ( The God who heals you) because to date, and despite the fact he has suffered thousands of seizures, he is as normal as any just turned two year old you would ever meet. And THAT is a miracle!!! and THAT is what we need be focusing more on.

I was going back and reading some of the last few posts and it kinda hit me that I'm not really giving Dawson a fair shake here. The things we deal with are real and concerning, BUT those things are not what makes Dawson Dawson. They are side effects of a small brain filled with many different kinds of seizure meds. The real Dawson is the big blue eyed kid standing at the refrigerator door knocking on it and saying " knock knock cheese" because he wants a cheese stick and then gives a big grin says " Thank you" afterwards..

Its so easy for me to get sucked into all the horrible and negative things that accompany a two year old riddled with seizures but its time I stopped for a moment and recognized, and shared with you, how truly BLESSED this family has been.

Thanks be to God for he is Great and Mighty!!

B.T.W Melatonin is awesome. A little shot and Dawson is out like a light.. Goodnight little buddy We love you

Jeff

Calmer Days

The past few days have been much calmer comparatively speaking. Dawson has settled back into a more normal seizure routine that doesn't involve those awful things we saw last week.

Sleep has been one of the issues we are dealing with as of late. Dawson used to be a horrible sleeper but then got into a pretty good routine of sleeping. Going to bed at a decent hour and for the most part he was sleeping through the night ( In our bed of course)

But seems now that he just can't quite get himself settled into a deep enough sleep. I think it has a lot to do with seizures myself. Well not necessarily seizures, but brain activity while trying to sleep would probably be more correct to say. At any rate, Its a lot like sleeping with a tumbleweed. I usually get the feet end of the business which means I now wake in the mornings with my back and kidneys aching from being mule kicked all night long. The past couple of night I have made our sectional my bed, and my back feels MUCH better in the morning. Imagine that.

Dawson's mood has been a little better the past couple of days. The evenings can get kinda iffy at times especially when he gets sleepy. We have decided to go back and give the Melatonin another try for a while to see if that wont help solve some of the sleeping issues.

Your prayers and support mean the world to us and praying for our son is the greatest thing you could EVER do for our family. Thank you!!

Our love to all

Jeff and Allison

Hospital Bound

Lots of info to post this evening. Ill make it as brief as possible...

We were able to speak at length with Dawson's Neuro yesterday evening over the phone. She is such an awesome Doctor and purposely waited until after office hours to call us so she could take all the time needed to help answer a lot of questions.

Of course there is no way to know right now what transpired in his brain to make this new seizure type come out but I think she thinks its more of an age thing more than anything. Dawson is now 2 and she said more times than not, As they grow out of the Infantile Spasms, a new seizure type will develop. If this is going to happen, it usually happens between 2 and 3 years of age. We have made a few med changes and she said that its a possibility that we crossed that sacred seizure threshold allowing him to have a breakthrough seizure.

The plan????

November 9th we will head to UAB Children's Hospital for a ( get this....) 5 day video EEG!!
HOORAY we just love those things... And theres nothing like being in the hospital room with a two year old who is not sick... See, when kids are sick they don't mind just laying there in bed being good. Dawson is a mover and a shaker. Doesn't like being pinned down and I just cant imagine how we will survive 5 days in that hospital.

She did say that its a possibility that we will go ahead and do the Keto ( and/or) modified Atkins while there. Either way she wants him in the hospital when we do it so he can be closely watched. She also wanted him off of Topamax before we started the diet to lessen the chance of kidney stones while, but that also conflicts with the fact that coming down off of the Topamax could possibly be part of those awful seizures we saw the other day.

Its all very confusing but we are hopeful that the hospital stay will provide some answers for us. She also said that if they get what they are looking for on the EEG early then we could go home earlier but to go ahead and plan on staying the full week. So that's the plan for now anyway.

To address some questions......

Dawson has been on a B6 therapy before while on Keppra and it just didn't seem to do that much for him. Maybe we just didn't stick with it long enough for it to make a difference. Right now he is on a very very low dose of Kepprage but even at that low dose I can see a difference in how he acts when he gets upset about something.

Dawson did not, and under doctors advice, will not be getting any flu shots or any other shots as far as that goes. It is MY opinion ( among others as well) that these shots are the source of our problems. Once again, I am NOT anti-vaccination... I am only anti-vaccination when it comes to Dawson.

Follow the numbers here for a min...

Days after getting his two month shots he starts having seizures...
We finally find seizure freedom and he goes 360 days straight with No seizure activity and a clean EEG.
He then goes to the Doctors office and gets two shots because everybody thought it was safe to do them one or two at a time.
30 hours after those shots, and after 360 days seizure free, he is having seizures again and here we are.
So you do the math ,and then try to convince me that shots have nothing to do with this....

So no more shots for Mr. Dawson!!! EVER

Ok yeah, its a pretty sensitive subject for me. sorry

The good news............

We haven't seen any more of those seizures since Saturday evening. Just his normal clusters of spasms ( not that we any more happy about that) Its just that those others were So hard to watch. Absolutely heart breaking and its something that is etched in my brain forever.

Keep Dawson in your prayers as we muddle our way through the next few weeks. It should be interesting.

Jeff

Just when we thought it couldnt get any worse...

Saturday night was a doozy for us.

Dawson laid down Sat afternoon for a nap and when he woke up I went back their he was sitting up in bed. I laid down beside him to see if he wanted to go back to sleep and thats when it happened...

His eyes rolled back in his head, he was completely limp, not breathing, turning colors. Never never never have I seen anything like this before in my life. I screamed for Allison to come and when she saw him she called 911.

After a couple of minutes, he started to come out of the seizure but he was definitely not back yet. Lights on but nobody home!!

She was talking to the 911 operator and we were discussing whether or not we needed assistance and he did it again.. eyes back, limp, stopped breathing the whole 9 yards all over again.. Of course at this point we told them to come as fast as possible.

We have been living with seizures since Dawson was 2 months old and I consider myself to be well kept together during clusters of seizures but I was just not prepared for this. He has never done this before and it scared Allison and I half to death.

At the hospital he was monitored and given an IV ( Dawson put up a great fight!! I was so proud) and after a while he was given a seizure med through his IV that is supposed to stop seizures and shortly after that we were discharged to go home.

We made it to Granny's and Grampy's to get Madison and I was holding Dawson and it happened again.... It's as though whatever they gave him ( cant remember the name right now) made it worse... who knows??? This kid is really putting us through our paces right now..

Why after 2 years would he have this type of seizure out of the blue like this???

Saturday night he was fine, He woke up Sunday morning and had his " normal" cluster of seizures and as of today he is doing really great..

I don't even know what type of seizure to call what he had??

His neuro is supposed to call us later this afternoon and I am anxious to hear what she thinks about all this and what possibly is going in with him..

Our family, our son, is under attack from the enemy. He wants us to cry out in despair and question everything we know to be the truth. He wants to break us down because he knows how much we love God. We WILL NOT be shaken!!

We praise God for all he has done for us!!

Please continue your prayers for us as we fight for seizure freedom for Dawson.

Our love to all

Jeff and Allison

Screaming Seizures

The other night Dawson woke and started to have what we thought was going to be another cluster of seizures just as he has done many times before. But this night it was different..

With each seizure there was a scream. Its very hard to describe,but if I had to, i would describe it like this.... If you can imagine scaring the absolute BeJiggles out of a two year old.. It was that kind of scream. I mean a really really scared and frightened for his life kind of scream..

Not a scream of pain, but a scream of terror.. And he did this with most every seizure during this cluster. I think it was more of a reflex than him being that scared or terrorized.. At least that's what I'm telling myself because it makes me feel better. In between seizures/screams he was fine but those screams.... good grief.

We have never heard anything like that before in our lives and we hope we never do again. It was absolutely sickening and literally made me sick to my stomach hearing and seeing it. Allison bless her, was the one holding him while he was doing it. Needless to say, we didn't sleep much the rest of the night afterwards.. Please Dawson, I know you couldn't help it, but PLEASE never do that again..

We made the decision to restart him on Keppra. Most of you know I hate Keppra because of how it affects his moods. It makes him angry and act out in rage but I have noticed that when he came off of Keppra his seizures were a lot harder. So we are three or four days into restarting Keppra and we can tell a difference. In his mood yes, but also in his seizures. There have been no more screaming episodes and for that we are truly thankful.

Please continue to pray for him as we seek seizure freedom once again.

Love to all

Jeff and Allison

Weekend Get-A-Way

This Weekend we were able to escape for a long, LONG, overdue get-a-way. We went to the Marriott Grand Hotel and Spa in beautiful Point Clear Alabama which is right on the coast. We all had the best time and hated to have to leave. A big thanks to the Prattville Wades for letting us crash on the way down. Dawson was very much appreciative for not having to spend 7 hours straight in the car. ( And so were we!)

The first day Dawson seemed a little weary from traveling and didn't do so great but Saturday and Sunday he was a dream and had a blast at the pool and then we went to Gulf Shores for more fun. Grandmom and Granddad were able to go with us and we were so thankful to have them along. Be sure to ask Grandmom about her bicycle accident at the hotel!!!

Dawson traveled back Sunday for 6 hours without so much as a fuss but that 7th and final hour on the road was kinda rough. He was ready to be back home in his own environment. But all in all he and Madison did great and had a blast!!

Seizures are no better yet and we are supposed to meet with the nutritionist at the Neuro office about starting the Modified Atkins Diet. There have been several inquiries about this new testing he is going to have done soon and as we get info on it and what exactly it pin points, we will pass that along to those who are interested. Apparently its some brand new cutting edge testing..

Just last week he was evaluated with Early Intervention for developmental delays. Although we don't have the official report yet I feel as though he passed all test with flying colors. He sat in her chair and did everything that was asked of him. We are still a little concerned with speech though. He does have language skills, and they are improving, but just not at a rate that we are comfortable with. Socially he is a dream, but once again, we are concerned with these fits of anger and rage he is having... Not sure how common it is or even if its seizure/med related.

One min he is fine, the next he is having this anger fit. Of course he has now learned to find a boo boo on his leg and that's what he blames it on.... yeah right kid!!

Anyway, we are doing good and will report as info comes in on some of these issues posted here.

Our love to all and thanks for your prayers

Jeff and Allison