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