Dawson VS Seizure Monster

Potty trained

2012-01-22T15:26:00.002-06:00

POTTY TRAINED!!!.. oh yeah!!!!!!!!!!

Dawson has been in big boy underwear for more than 3 weeks and is doing fantastic.. #1 and #2 in the potty.... no problemo!!

We all are doing great and pray that you are too!

Jeff

New Year

2012-01-02T19:12:00.004-06:00

Some pics of our little hero.. Enjoy!!

Sentence of the week from Dawson.... " Daddy, I need some medicine. My head is hurting again"
( as a side note to this, we think Dawson likes the taste of the orange liquid motrin which is what is sparking this) We hope he is not really having this many headaches. Wondering though if kids with cortical dysplasia are more prone to headaches though??? I mean that really would make sense..

any thoughts??

The Beauty of Seizure Freedom

2011-12-08T08:45:00.004-06:00

It's been so long since i've posted anything on here that I had a hard time remembering my password. If i am to be honest, I have to say the lack of response to our last couple of post.... you know, the ones about a little boy being seizure free for a year... was a little underwhelming. This blog has NEVER been about us getting accolades from the general public, or about our situation being so good, or being so bad, or being anything. But when a little boy with Infantile Spasms goes seizure free for a year.... now THATS something to praise God publicly about. That's really all we are trying to do at this point. Anyway.... it sorta took the wind our of my sail as far as opening up and sharing with people whom i have never met about the personal side of my family. BUT, alas, My job as Dawson's dad IS to share. People need to know some of these kids have a chance. Infantile Spasms ( although horrific and devastating) doesn't necessarily mean a death sentence. Hopefully, Dawson brings HOPE to some people. Hopefully somebody who is brand new to the awful world of Infantile Spasms will stumble across this small meaningless blog and find PEACE. If we are able to provide that for just one single person, then all 4 years I have been sharing my son with all of you will be worth it.

We give ALL praise and glory to the one who healed him Jesus Christ. So yeah, when he just out of the blue heals a child.... I expect a little more. At least an AMEN or something!!

Theres my sermon for the day....... Now on the main event....

As you can see from the pics and video, Dawson continues to thrive. The changes continue to come weekly if not daily in some cases. He can trace his name ( see pic) and his teachers in school say he is excelling in the classroom. It is my opinion that if he were to be tested today, he probably wouldn't even qualify for services in the school anymore. The seizures stopped, there was a very small lull, and then his brain kicked into learning overdrive!!!!! We are so proud of everything he is doing.

Dawson now talks in full sentences. He can count to 17. We are able to have back and forth conversations with him in full sentence form. He knows all his colors. He can sing songs from beginning to end and if he cant remember the word, he will substitute the words poo poo and pee pee any chance he gets.. ( Cause he is definitely all boy) Dawson is fully potty trained going #1 on the potty but still refuses to go #2. and he has certainly found his personality. He is one of the silliest things I have ever seen. He is constantly bothering his sister and because of it they fight like cats and dogs. Yep, everything is just as its supposed to be. He is now able to manipulate and solve puzzles that he couldn't do before, He makes friends very easily with other kids now where before he would refuse to engage. His favorite thing is to play Just Dance on the Wii ( and he is very good at it too.) Dawson is also becoming very independent as well. He is able to get out of the bath, dry off, get his pull ups on, put his pants on, and brings a shirt and socks to us to help him get those on. If you try and help him brush his teeth, it will be followed with a very scornful " I want to do it by myself daddy!!"

I literally could go on and on.. and chances are... next week i will be able to add something brand new to the list that is is now doing. It now seems as though he has a chance of escaping any negative side effects of suffering thousands and thousands of seizures. I will always remember one of the things his Neuro in Huntsville said to us the first time we saw her. Dawson was two months old and she told us.. " The key to this whole thing is stopping the seizures. If we get the seizures stopped, the brain WILL perform just as its supposed to" I can't tell you how long I hung my hat on those words... If only we can stop these seizures!! Well, when they stopped, those words became a reality and all were left with is a very happy 4 year old.

Our God is indeed good.

EEG Cake

2011-09-28T13:26:00.003-05:00

The cake was decorated by yours truly!! and i was very proud of my cake decorating skills. Not bad for a guy huh??

Anyway, we werent sure what to do for a one year seizure free cake so this is what we came up with.

The day was awesome and we were able to celebrate this wonderful event with come close family and friends. More pics to come soon

Love to all

Jeff

One Year Seizure Free!!

2011-09-22T18:56:00.003-05:00

This coming Sunday marks one year of seizure freedom for Dawson.. ( It also happens to be mine and my beautiful wife's anniversary) What a great day Sunday is going to be right??!

As I think back a year ago today and where we were.. then compare it to how things are one year later.. It is literally overwhelming to think about the difference. Its like night and day!! Just a year ago today we were preparing for a trip to Memphis to see a Pedi Neuro that our current neuro had recommended we see. As good and wonderful as our current neuro is, at that time she was out of answers and wanted to get a second set of eyes to see if she missed anything. We tried almost all of the meds in all sorts of weird combinations and nothing was helping.

It was in Memphis that a malformation in his brain was located, and this coming weekend a year ago we would hear the words brain surgery for the first time. They wanted to remove his right frontal lobe in hopes of slaying the seizure monster. The way we ended up in Memphis was one of those God things. He very specifically took us there in ways that even a non believer would have to admit seems just a little to much of a coincidence not to have the hand of God in it. It was just that obvious. I vividly remember being in that hospital room watching the EEG of a seizure ridden kid. The same EEG that I had seen many many times before. It was an absolute mess. I remember saying to god.. " OK... you brought us here... now what??" We thought at the time that brain surgery was the reason he took us there.. Finding that abnormality and removing it would fix Dawson. It was very hard for us to make that decision to have that kind of surgery done. Especially since it came with no guarantees!! In the end, what i now know was that he wanted us to trust HIM.. not the diagnosis, not the surgery, not the doctors, not ourselves.. but HIM.. And when that commitment was made, a commitment to fully trust..... Well that's the exact moment he had his last seizure.....

Seems as though i short changed God a little bit. See, I thought he wanted to heal Dawson through the removal of part of his brain. God had something much much bigger in mind!!!!

So now as I look back at where we were a year ago, and I see the differences in him... I stand in awe and amazement.

One year ago we were dealing with a seizure ridden three year old. A kid whom we couldn't even take out in to public because of severe behavior problems. He was filled with rage, aggression, and anger. His seizures at the time were knocking him off his feet and as I had already mentioned, his EEG was just a mess. Constant seizure activity..

He could talk but only one word at a time and his vocabulary was very limited to just basic needs. He had pretty much zero social skills and would cling to your leg pretty much anywhere outside of the home. Although he liked music, he didn't sing songs, he was at a developmental standstill and making no progress in any of the areas he was behind in. There was very little joy in our lives as we watched Dawson suffer daily from the effects of seizures.

BUT NOW????? WOW!!!

The biggest change is that Dawson is HAPPY!!! I mean, this kid is truly truly happy. He is constantly smiling now!!

Not only does he enjoy music.. but he sings the songs.. i don't mean just parts of the song, but the whole song. Not only does he talk, but he speaks enough where you can have a conversation with him. He asks and answers questions, asks for help when he needs it and says some of the funniest things. For example......Just this week, Dawson was in his room laying down getting ready for bed in his own room. I had asked him earlier if he was going to sleep in his bed ( yeah right!!) and he responded with
" yes dad".. Moments later as me and Allison were laying in our bed he came into our room and Allison asks him if he is going to sleep in his bed and he responds with... " No..... DUH.. I'm going to sleep right here" and points to his usual spot right between me and Allison.

He plays make believe games... His favorite is pretending he is a restaurant worker and he comes to all of us and he will ask
" Hamburgers or chicken nuggets?" and off he goes to prepare the food and bring it back to you. He is able to use his imagination to have fun.. A year ago his imagination was non existent.

He loves to sit and watch movies. His favorite movie right now is " Despicable Me" and when he watches it he quotes about 80% of the movie line for line and word for word. It makes a funny movie even more funny!!

He is very social now. He is actively involved in our church's children's dept and also has started a head start preschool program that he goes to five days a week. His teacher says he is learning in leaps and bounds and has fun playing with the rest of the kids in his classroom. He is even learning to write his name.

He is about 90% potty trained in going #1. We don't even have to ask him to go anymore.. he just says he has to go and takes off to the bathroom. For some reason he still feels the need to ask " flush it??" when hes done as though the answer might just change on of these days??

Yes, our lives are much different a year later. Its just amazing what a year with no seizures can do. His brain is not only seizure free, but its a sponge now. Soaking in everything it possibly can. Yes indeed, God had bigger plans for Dawson. We couldn't imagine a year ago that today our lives would be like this.... But we are certainly thankful!!!!

Please join in with us this coming Sunday September 25 as we celebrate a true victory. A slain seizure monster and a happy little boy who fought with such vigor and tenacity. Heres to many many more seizure free years little buddy!!

Jeff

Happy Birthday Dawson ( and pics)

2011-09-04T20:14:00.005-05:00

A very special day today indeed. Our little hero has turned 4!! Its unbelievable what this past year has brought us. Especially seizure freedom!! ( 345 days seizure free today.) This year has been a dream for us. I remember hearing the words Infantile Spasms for the first time, and I clearly remember thinking that we would never ever be where we are today. A little boy, who with the help of Gods healing hand, beat an unbeatable seizure disorder and is now on a developmental fast track, attending preschool, communicating with us and able to actually hold a conversation. I find myself in awe of his developmental progress and marvel at the resolve of this very very special boy.

Happy Birthday Dawson!! We all love you more than you will ever know!!

Jeff

Dawson dancing

2011-08-15T13:59:00.002-05:00

Sorry this video is a little sideways.. but you get the picture.. He loves playing just dance on the Wii so we wanted to share some of the hottest new moves out there today. He gets his dancing skills from me btw

Hope you enjoy half as much as we did

Jeff

Bop It

2011-08-01T19:10:00.002-05:00

Yeah, were just showing off now. Dawson loves this little game and developmentally... Its fantastic for him. Its just over the last few days that he has gotten this good at it. He has almost beaten MY high score HA!!! ( Oh and at the end of the video, listen to him say " concentrate"

We are soooooo proud of the progress he is making. He continues to be on a slow but very positive and very methodical climb out from under the fog and damage of the seizures. There are so many people in his life that are affecting him positively right now. None more right now than our children's minister at our church. Their paths crossing was specifically designed by God and we are so thankful for "Miss Brandi". We have witnessed a true connection of sorts between these two and we thank God for her daily. She has been able to bring him.... out of his shell so to speak in social situations... Its hard to explain... Its just one of those God things ya know..

Speech continues to do really well... His newest thing is to ask " What?" after most anything that is said to him. Even though we know he heard us very plainly, you get the Whaaaattt??? His other new favorite phrase that were NOT so thrilled about is
" Poo Poo".. So i know it sounds funny, but this has been going on for several weeks. We kinda figured he would get tired of saying it but so far no luck. I try not to laugh, but hey im a guy, and there aren't many things more funny than listening to him sing Happy Birthday with every other word being Poo Poo..... ( see, its hard not to laugh right??)

Anyway, we are all doing really well. Basking in God's blessings and marveling daily at his healing hand.

Today is 311 days seizure free!!! CAN YOU BELIEVE IT????!!!!!

Much love to all

Jeff

Little Fish

2011-07-22T21:15:00.002-05:00

When your little one takes a seizure med that wont allow them to sweat, and cool their body temps... and its 176 degrees with a humidity of 276%........... and the heat index feels like 198...... about the only thing you can do is swim.... and does he ever love to swim!!

Come to find out, Dawson is quite the little fish. There are several times during any given day that you will hear that little sweet voice say... " I go swimming today??" Put him in the pool with his Puddle Jumpers ( which I highly recommend) and the kid is perfectly content. Floating around ( even swimming some) all over the pool. Thats my little guy!!

So not much new going on around here.. Ashlyn and Katelin have been with us for two weeks and I love having them home with me. What a special time and Dawson continues to do really well. Lots and lots of fun positive things going on around here concerning him.

More pics coming soon.... stayed tuned and as always thanks for your prayers!!

Jeff

Freedom and the miracle of Dawson

2011-07-03T17:02:00.004-05:00

Had this stuff brewing in my mind for a while...

I find it nearly impossible to put into words.... to explain to you using only the 26 letters that are available to me....what we have been seeing with Dawson lately. There is just too much!! The past two weeks have brought on another speech explosion. I think I see a pattern developing with speech. He seems to go for a month or two at a time kinda stagnate and then BOOM!! literally a speech explosion. I love it!

He is putting words together very nicely now to form sentences and his communication skills are soaring right now. Here are some of the things were hearing these days:

" Why is daddy crying?" ( I was only pretending to cry) " I told daddy stop it" " I want to go to church" " Wait a second" ( as he sticks a finger way up in the air) " I want to pull the kitty off" " I eat in playroom" " I want to see Ashlyn and Katelin"
on and on and on.... What a blessing it is to see him functioning in this manner.

For those of you who have followed this story for a while, you will remember the days of seizures and violence that he displayed. We always felt a source of the violence was the inability to communicate with us. He would obviously get very frustrated as he mumbled his version of words and we played the guessing game as to what in the world he was trying to say. Guess wrong, and you were as good as dead as far as he was concerned. Today, life is so much different. After literally thousands of seizures since he was 2 months old... Our little guy is talking, and he is learning.

This past week was Vacation Bible School for the kids at our church. A huge test for Dawson. We were somewhat apprehensive as to how Dawon would do. This is really the first time he has been in an extended " social situation" and we just werent sure what to expect. Would he play?? would he have fun? would he even behave?? The answer to all of that was a resounding YES!! Not only did he play, but he played hard. He didn't just have fun.. he had a blast.. and behavior was not an issue all week. The miracle of Dawson.... a little boy ravaged by numerous seizures daily, healed by the hand of God, is doing AND saying all the things that we were told he would probably never do and say..

The 4th of July is about freedom and celebrating that freedom. There are many types of freedom that we are celebrating this year. The freedom to worship as we please and the freedom that living in this country provides us. We are certainly thankful for the men and women who provide us with that freedom. But we are also celebrating the freedom of seizures. The monster that lurked in Dawson's brain. The monster who robbed him and this family of joy and happiness. The monster who took away his ability to function normally, and replaced it with developmental delays is dead... Now that is TRUE freedom, and today we celebrate that freedom.

Today is day 282 of seizure freedom. There is a lot to be said for that... its the miracle of Dawson. A special needs child who is indeed VERY special!!!

Developmental Study

2011-06-15T19:34:00.003-05:00

This week carried us to Birmingham to have a developmental study done. Dawson's Neuro wanted us to do this to give us a baseline of where he is developmentally and do a yearly sorta thing to see how he's progressing. It also serves the purpose of pin pointing weaknesses for his teachers at school as well as us to work on.

Dawson cooperated fully thank goodness and the entire thing went really really well as far as the testing goes. We went into this study knowing that there are issues. It's not like we needed to be told. There are obviously things that are not "normal" but what is amazing is how FAST the things that once wern't normal.... all of a sudden are pretty close to being normal.

Language skills for example... And understand " Language skills" encompasses much more than just the ability to say words. That obviously is a big part of it. But understanding language, and having the ability to communicate verbally is a big part of it.

Just months ago, this kid had ZERO language practically. He could speak a word at a time and that was pretty limited to 25 to 30 words. And here we are 264 days of seizure freedom and he scored very close to age appropriate for Language skills. Pretty amazing right?? I thought so too..

Non verbal skills...... thats another issue.. Still lots of problems in this area and working puzzles and that sort of thing.. BUT... he is constantly getting better, he is learning, he is HAPPY!!! OH BOY is he happy!! This kid is a huge cut up now, hopping around laughing, singing, talking in 4 and 5 word sentences left and right... The Seizure monster has been killed and life has never been better!!

Above is a picture of Dawson bowling. We went with our church group last night and Dawson ( with a teeny tiny wee little bit of help from daddy) bowled a 101.. Not too shabby!!

The kid is pretty amazing, the change in him post being healed has been the most fun to watch.. All I ever really truly wanted is for him to be happy.... and he is

Praise God!!!

Jeff

Yard work is hard work

2011-05-17T17:38:00.003-05:00

Once again, sorry for such a delay in posting. In this case, no news is good news!! Dawson continues to truck along and is doing better than ever!! Speech is incredible!! His communication skills literally grow every day now. Hes asking questions, saying sentences, telling us what he wants.... Its just incredible what a brain that isn't seizing can do.

AND.........

drum roll please.......

We are finally potty training!!!!!!!!! yessssssssssssss He is doing number 1 on the big potty on a regular basis and is even asking to go potty. We are finally on our way. God has certainly blessed us. Weve seen the worst of times and now were seeing the best of them.

Please dont misunderstand me. For some it might seem as though we are bragging.. We are not.. There are people out there who read this blog who child is seizing right at this moment. Our hearts remain with you all. Allison and I were watching a video just last night of a little girl in the midst of a horrible seizure. We both just sat in complete silence as tears ran down our faces watching this beautiful little girl. We remember all too well what thats like. Seizures forever etched in our minds. To me there is nothing worse. Our prayers continue with those who continue to suffer constant attacks from the seizure monster.

But people DO need to hear that Infantile Spasms ARE beatable. People need to know about the fight AND the victory!!

Today is day 235 with no seizures and my son, who was robbed of the ability to communicate or think just counted to 15 and asked for us to give him pizza..

Praise be to God!!

Jeff

showing off

2011-03-31T18:07:00.002-05:00

over 12,500 seizures and they thought he would never be smart!!

Dawson counting to 10.. take 10 seconds and enjoy a miracle

singing

2011-03-25T19:24:00.002-05:00

Here is a video on the way home from Disney World last month.. Its hard to hear him singing unless your in a quiet room and listening close. But you can see him mouthing the words and singing one of his favorite songs. " Rain rain Go away" from Jack's Big Music Show ( one of my favorite shows btw)

Good news continues around here. Dawson continues to do really well. I hate to be greedy, but...... I really really really wish we could get started on this whole potty training thing!!!! :)

Hope you enjoy the video of Dawson.. We are SO proud of him and all he is accomplishing.

Love to all of you!!

Jeff

Learning foods

2011-03-21T14:18:00.001-05:00

Learning how to say the foods he likes to eat.. Katelin was teaching him the word Burrito and she was of course rolling her R's to make it more.. authentic. Dawson has his own version of course..

Copycat and a Tat

2011-03-16T17:38:00.003-05:00

First of all the Tat... Allison has been wanting to do this for some time. She felt she wanted a permanent reminder of what not only Dawson has been through, but what God has done in our lives through this ordeal. Although its not for me ( at least not right now) I fully support her wanting to do this because of the meaning it gives.. An epilepsy awareness ribbon draped over the cross is just perfect!! For those of you who know Allison and didn't think she was capable of getting a tattoo... SURPRISE!!! lol

Now on to the copycat...

This past week has just been incredible. Dawson has been making slow but steady progress developmentally since the seizures stopped 173 days ago.. But this past week we have seen an EXPLOSION of speech from Dawson. He literally copies everything that is being said in the house.. Doesn't matter who's saying it.. he hears it and repeats it pretty much word for word.. Its as though his brain is on rapid fire with speech right now and of course we are thrilled!!! Its just amazing how well he is talking and everything he is saying.. God is certainly good right??!!!!

God has literally delivered us from Infantile Spasms, seizures, severe behavior problems, and everything associated with this terrible disorder... Allison is correct, the further we are from those days, the easier it is to.... not forget... but to discard and not think about it. I think we should always think about it. Remembering how bad things were helps us to put focus on just how awesome God truly is..

Maybe i will get a matching one... sorry mom!!

Tomorrow takes us to Huntsville to see his Neuro for a visit.. No problems, just a scheduled visit. Our chance to show them how wonderful he's doing!

Thank you again for your prayers, we certainly continue to pray for all of you whos children suffer still... We will not cease our prayers for you.. ever!!

Love to all

Jeff

Background misfunction

2011-03-04T19:19:00.002-06:00

To those of you who have been checking in and only seeing green, I apologize. Apparently when I changed the blog background recently, I had inadvertently selected a green background when I was tweaking my color choices. I do not know why for some it caused a problem and not for others. So, those who have been seeing green, scroll down and check out our pics from Disney World (we had an awesome time). We appreciate you checking in on our little guy, he is a joy and we are truly blessed. Hope everyone has a wonderful weekend. We have the girls with us this weekend, so we have a full house!

Our love to all,
Allison & Jeff

Weekend Stuff

2011-02-26T14:07:00.003-06:00

Just a quick post today on how Dawson is doing....

Our house has been invaded by some nasty little bug.. Fevers, coughs, snotty noses etc etc.. Dawson kicked it all of and has spread it to Madison and Allison... So far so good for me. not even a sniffle ( I hope I can keep it that way)

Dawson still remains seizure free and is learning in leaps and bounds. I know this seems to be the focal point of my posts now a days ( How well Dawson is doing) but what do you expect?? What else do i have to blog about?? No seizures, no behavior problems like before... Everything now a days is centered around how quickly he is catching up developmentally. He still has ways to go mind you BUT... progress progress progress!!!!!!!

This week seems to be the week of " I wants" for Dawson.. I want my mommy, I want my juice, I want my juice box, I want my sissy.... Oh as Im typing this it seems so unbelievable!! I reflect back on where we were just a few short months ago, a seizure ridden kid, laying in a hospital bed.... Them telling us they are wanting to remove a section of his brain.... and now??

No surgery needed, seizures gone by the hand of God and this kid is doing way more than I ever thought he would.. Dawson slayed the seizure monster and now holds his foot on the seizure monsters throat.. Stomp hard my son, stomp Really hard!!!

A note to Kinsleys mom.. thank you for your comment and we would love to get up with you!! You didnt leave us any contact information so please email us at wade92503@yahoo.com and leave us a way to contact you.

Thank you again for all your prayers! our love to all

Jeff

Disney World and stuff about Dawson

2011-02-17T18:19:00.007-06:00

We are safely back from Disney World.. Wow what a trip. We had SO MUCH fun. We were of course worried how Dawson would do traveling that far, spending all day in the park, being around the different characters, all the different people... He did just Fantastic!! He loved every minute of it. He rode the rides, even did a roller coaster once.. It was just a great great trip as you can tell by the pictures. Enjoy

I did want to do an update on Dawson while im on here. Today is day 146 seizure free!!! Praise God!! We have witnessed not only a seizure ridden child become seizure free.. But a TRUE transformation. This kids brain is like a sponge right now. He is soaking up everything.. I cant even describe how his vocabulary has grown 100 fold over the past couple of months. He is talking in short sentences now and can even carry on a conversation. questions and answer type stuff. He is learning at such a rapid rate that its hard to keep up with. He is excelling in school, singing songs, naming all the shapes and putting them in their perspective places, counting, knows and says his first and last name, points to and says all the animals... its just incredible!!!!!!!

He is asking for specific foods to eat.. plays Wii with Madison.. I could just go on and on. There is no possible way to do it justice on a blog.. Its just something you would have to see with your own eyes.. God has truly truly worked a miracle in this child.

Just this morning, Madison had on her school shirt that has a chipmunk on it. Dawson walks up to her and says " CHIPMUNK" I didnt even know he knew that word. Its stuff like that that we are so excited about.. His learning and progression are happening at such a rapid rate right now its almost going to fast to enjoy it!! What a miracle right??!!!

We are so so proud of all he is doing...

Sorry for being away for so long.. I have lots of blog catching up to do in the next coming days..

Hope you enjoyed a little sample of our trip

Our love to all of you..

Jeff and Allison

Disney bound

2011-02-05T06:09:00.002-06:00

This morning we depart for a vacation ( and a well deserved one at that) for Disney World in Orlando Florida. If you will, say a prayer for safe travels as we make the two day drive down there.

Disney pic marathon coming soon!!!!!

Our love to all of you

Jeff

Progress

2011-01-18T10:14:00.002-06:00

Its amazing what seizure freedom brings. Just a few months ago Dawson couldn't even come close to acompolishing this task. As a matter of fact, he wasn't even that interested in trying. Seizure freedom is bringing in a host of fun stuff and we couldn't be more proud of our little warrior!!

This has been a good week for talking too. little 3 word sentences here and there and hes making a lot of effort when it comes to speech.

Thank you for your continued prayers and support.

Our love to all

Jeff

Happy New year and a pic marathon

2010-12-31T18:28:00.008-06:00

This has certainly been an interesting year.. Full of surprises and ups and downs. The year has ended much better than it began. It began with seizures... and were ending with none. Today, Dawson has been seizure free 98 days!!! 98 days!! We have celebrated each and every one of them and give praises to the healing hand of God. For he has delivered Dawson from the seizure monster.

In my heart, I know he has been healed. The enemy still likes to play games and mess with my mind though. I am finding its much harder to have the kind of faith to believe that he HAS been healed than the faith it took to believe he COULD be healed. Strange I know, but its true.

After EVERYTHING God has done for me and my family, I somehow still find it within myself to doubt him.. I have SUCH a long way to go!!

But I stand before you today, and proclaim victory in Jesus name over seizures.

Dawson is doing so good. He is so happy. He is learning so fast.. He has great distance to cover to get completely up to speed but he is making up ground fast.... Christmas morning we walked in with him and all eyes were on him to see his reaction.. He looks around with his sleepy little eyes and then he says... " PRESENTS!!" We didn't even know he knew that word!! Speech is coming along very nicely.. slowly but surely he is communicating. We are still so amazed at what life is like with a slain seizure monster.

We go public places without a second thought about what Dawson will be like.. We go out to eat in restaurants ( something we didn't even DARE to try) most of you know what Im talking about.. Its just so amazing.

So we wave goodbye to 2010 on a very good note.. This year has been full of spiritual growth. My best year in 40!!

Hope you enjoy all the pics from our holidays.

Love to you all

Jeff

Also, We had our first white Christmas that I can ever remember.. White Christmas in Alabama!! Just doesn't bet any better than that..

Also again, If you notice the pics with Dawson's cut eye and shiner... He got in the way of a vicious ping pong match between me and Madison on the Wii.... Thank goodness it was Madison who hit him and NOT me!!

Merry Christmas

2010-12-24T09:14:00.002-06:00

Wishing all of our friends near and far a Christ filled Christmas this year..

MERRY CHRISTMAS with much love to each and every one of you

Jeff, Allison, Ashlyn, Katelin, Madison, and of course Dawson

little santa

2010-12-20T19:27:00.004-06:00

Hanging out all Santa like... enjoying being seizure free. His phrase of the week this week.... " HO HO HO"

We are of course loving it. Loving seizure freedom and all the great stuff seizure freedom brings!!

Also appreciate all of you and your many prayers!!

This week we have also been singing our ABC's. Seizure freedom = Developmental gains.. Hes got a long way to go but hes catching up fast.

Our love to all of you

Jeff

Tomorrow would have been a bad day

2010-12-12T14:53:00.003-06:00

If today was going to be the day the day it was going to be 79 days ago, then tomorrow was going to be a long day. Because 79 days ago we were in Memphis at Children's Hospital talking to Neurosurgeons. Those same neurosurgeons had just days ago had found a malformation in Dawson's right frontal lobe. 79 days ago we were told that the best chance Dawson would have for seizure freedom was to have brain surgery and have a portion of his brain removed. 79 days ago we scheduled brain surgery for Dawson based on our faith, and the fact that we believe God led us directly to Memphis for a specific reason. We did not at the time know the reason, but we both felt it.

79 days ago, while in that same hospital, Dawson had his last seizures. So just in case your math isn't as good as mine, tomorrow would have been the first day of a two week, two brain surgery process. So today, instead of packing for a two week stay in Memphis, instead of spending the day filled with worry and dread.... Today, we instead are kicked back at home, enjoying a seizure free little boy. A little boy who in the last 79 days has shown remarkable progress in catching up on developmental delays that having seizures since he was two months old has caused.

When we scheduled this surgery, I had today specifically in mind. I wondered how I would feel today.. I wondered how scared i was going to be knowing I was going to place my 3 year old on an operating table. Knowing I was going to have to kiss him goodbye. Knowing I was going to have to watch him endure two brain surgeries. 79 days ago I had no idea that God had different plans for us and different plans for Dawson.

So instead of spending the day in fear, and worry, and living with all the questions that I knew I was going to have.. ( like what will he be like after they remove part of his brain??, What if the surgery is not successful and now we've complicated it by having this surgery done?? ) Instead of all that.. my thought process is one of gratefulness and thanksgiving. Thankful that God's has undeniably intervened. I am so grateful for Dawson being seizure free and grateful that his EEG is now normal.

You certainly can believe what you want, but IM telling you that Dawson is a child who has been touched by the hand of God.

A little boy who was ravaged by numerous seizures daily, who couldn't say more than one word at a time, who was violent and developmentally delayed has been transformed into a seizure free kid, who is as sweet as can be, who is full of hugs and kisses, and is now speaking more and more freely with each passing day.

79 days ago, I had no idea that our lives could have changed as much as they have..

Thank you God for your healing hand!! Guess whos having a seizure free Merry Christmas this year????

Your love, support, and prayers have meant the world to us. Thank you

Jeff

Busy weekend and Pic marathon

2010-12-05T07:51:00.009-06:00

What a busy weekend so far.. Not a whole lot to say so I will let the pics do the talking.. We took Madison to Huntsville Friday night to see Disney On Ice Princess Classics. It was a great show but I think Allison and I liked it much better than Madison did...

Saturday morning we went back to the Christmas tree farm to cut down the tree we tagged a few weeks ago.. Grandmom and Granddad went with us and everybody had a blast. This was our first time visiting this place and I think we have started a new family tradition.. They operate out of an old barn which I think is what makes this place so cool. Santa was there, they were serving hot apple cider that was warming on an old wood stove, two mules ( Jack and Jill) giving wagon rides.. It was just a lot of fun!!

Came home, got the tree up and then we had Madison's birthday party.. Thanks to everybody who came!! and a special thank you to those who drove in from out of town to help us celebrate Madison's 6th birthday. You guys are very special to us!!!!

Hope you enjoyed the pics

( and today is 72 days seizure monster free!!)

Love all of you bunches!!!!!

Jeff

ready for bed

2010-12-02T19:48:00.001-06:00

Our happy little boy has been seizure free for 69 days

Published with Blogger-droid v1.6.5

Madison is 6 :)

2010-12-01T21:31:00.002-06:00

Today my sweet little girl turned 6. I can not believe it has been 6 years since this wonderful child came into our lives. She was an eager little girl, didn't want to wait around in the womb any longer and decided that three more weeks was just too long, so she came early. "I'm not ready!" were my first words after the nurse said time to go. We were actually going to go and finish getting things for her room after that weekly check up appointment. I tried to convience Jeff it would be okay to go get some things and then head over to the hospital, I didn't really feel like I was in labor but what did I know, he was having none of it. I couldn't even go home to get my things for the hospital, which by the way were not packed and ready to go....I just wasn't ready! Instead we found ourselves heading to the hospital, which meant my family ended up doing the running around for me...thanks guys!!!! I do not know what I (we) would ever do without the constant love and support of my family, they are so awesome!

I have been blessed with a wonderful, thoughtful, smart, funny, kind, generous, helpful, loving, tenacious, ( I could go on and on ), daughter. She is truly special and I thank God for my precious angel.

Happy Birthday Madison!!! I love you!!!!

XOXOXOX
Momma

Thanksgiving and stuff

2010-11-27T09:17:00.004-06:00

This is a little delayed I know... but things have been crazy over the last few days..

First things first. Thanksgiving this year is a no brainer. We are thankful for seizure freedom, A normal EEG, and a developing happy 3 year old little boy. God has done a wonderful miracle and words can't even begin to describe how thankful we are.

We have spent the last couple of days with family eating wonderful food and tons of it ( tis the season right) Which leads me to the next thing I am thankful for. We have the most amazing family and support group here. Allison and I are both so lucky to have our parents living so close to us. They have been God sends to us. They watch the Dawson during the day while we work so we don't have the added expense of childcare. They have done so much for us and we are truly thankful for the amazing family we have!!

Dawson continues to do very well. Being seizure free has opened up an entire new world for him. Changes are happening so quickly for him as it seems his little brain is in " catch up as quickly as I can" mode.. Some of the things we are seeing are very interesting. For example, he has all of a sudden become afraid of heights. Not too long ago you would find him perched in all sorts of places where he had climbed to ( most of them dangerous) and now he is so very much more aware that he is in danger.

He used to love being picked up and spun around the room, turned upside down, so on and so forth. Now it freaks him out if you try to turn him upside down. I look at these things as positive developmental goodies..

His newest thing.... He has become VERY shy around people. Even people he knows!! He goes into complete lock down mode. Grabs me or allison around the neck and just will not turn loose. I admit, his " shyness" seems to be on the very extreme end right now, but once again to me it means his brain is working, and he's trying to figure out some social things that maybe before he was completely unaware of.. Its just so cool to watch him learn.

Language skills continue to develop. He is still not anywhere close to where he should be for his age... but hes getting there. He is able to sing songs ( can't understand ALL the words but hes singing them) and his little sentences are getting longer. Every night him and I play the " night night " game. We say night night to everything we can think of.. He says night night moon,
night night stars, night night trees, night night nose, night night whatever he can think of... We are certainly headed in a very good direction!!! Its hard to get used to this new norm.. I still find myself wanting to scream to the whole world " THIS KID HAD INFANTILE SPASMS.... ONE OF THE RAREST MOST CATASTROPHIC FORMS OF EPILEPSY...... LOOK AT HIM!!!!! HES WINNING!!!"

But the truth is, most people just don't understand. Most people ( thank God) have not been exposed to this kind of stuff... For those of you who have, you know exactly what I'm talking about. For those of you who have... you KNOW what a miracle this is to be able to defeat Infantile Spasms.. So yeah, I'M going to brag and boast as much as I can.. Dawson can't say it yet so I will say it for him...

" I beat the seizure monster!! I fought through thousands of seizures, Ive endured surgery, being put to sleep multiple times, needles, having things super glued to my head more times than I can count. Ive endured multiple meds being dumped into my body, all of which made me feel completely out of sorts. Ive endured lengthy hospital stays and spinal taps. Ive endured feelings of rage and being out of control. Ive been afraid and I have been scared out of my mind. Ive endured the frustration of wanting to talk, but being help prisoner in my own brain by the seizure monster. Ive even endured watching my parents cry as I fought through seizures.
But, I have seen Jesus.. He's been with me the entire time and with his help, the seizure monster has been silenced. My mind is now free and I am happier than I have ever been. Thank you God!! "

Yeah, Id say were very thankful!!

Christmas tree farm

2010-11-20T18:51:00.003-06:00

Wow, that was a short winter wasn't it??? We have been blessed with nice Spring like weather here this weekend..

Allison found a Christmas tree farm not too far from here and insisted that we go.. We love live Christmas trees and I thought it was a pretty good idea to go check it out. We have always been one to buy a live tree but have never been to a place where you could tag one and come and cut it later. We were pleasantly surprised!! This place was fantastic!! We were able to walk around and after much looking we found the perfect tree for us.. We tagged it, and we will go back in a week or two to cut it down and bring it home.. A new Wade family tradition to say the least.

We all went to Cracker Barrel this morning for breakfast.. Had a great breakfast but today hasn't been one of Dawson's best days.. He got all antsy before the pancakes could be delivered. I was using the " jump the peg" game they have there on the table as a therapy tool ( which was working great) he is really good at putting the pegs back in the holes again by the way!! ( Way to go Dawson!!) but after the third round of doing this he took the pegs and chunked them. ( right at the two nice ladies sitting right beside us) to which they replied.." its ok, we have children too"

Lady, if you only knew!!!!

We did make it through.. The rest of the day has been off and on good mood/bad mood.

But let me say this.. Dawson in a bad mood today with no seizures is HEAVEN compared to one of his BEST days with seizures so praise God he is the way he is now..

Today is day 57!! 57 days of glorious seizure freedom!! All glory and praises to God!!

Much love to all of you

Jeff

What do I say

2010-11-18T17:14:00.003-06:00

This is a weird spot for me.... I want keep everybody abreast as to the happenings of Dawson but I find myself with not much to say.. I cant talk about all the seizures he is having and how heartbreaking it is.. because they are gone... I can't talk about his rage and aggression issues and how hard it is to watch him struggle through those terrible moments because none of that is happening.... Im really not sure what to do here..

I guess I could talk about giving his medicine every evening and how easy that has become but that would be pretty boring....

Or maybe I could talk about how WELL he and Madison get along and how well they play together now that he is in seizure free land.... but thats not very interesting either..

I did go stand in line today at the cable company to replace the cable box in the kids playroom so that I dont have to watch Nick JR on the HD TV 24/7 Yeah, thats not doing much for me either....

So I guess all thats left to talk about is how we still stand in amazement and awe every time we look at Dawson now.. Things around here are as normal as can be... He is catching up so quickly now.. He is full of smiles.. He is talking to us and making HUGE gains in the communication dept.. A funny thing that is completely new in seizure free land......

He is all of a sudden afraid of heights. ( which is a great thing right??)

Yep, things around here are pretty boring now.... and i wouldn't have it any other way..

Prayers and love continue for all of you..

Jeff

2010-11-14T09:43:00.003-06:00

I guess two of my four kids are just weird... Madison ( and now we know Dawson) love fresh broccoli?? really??? We grow our own broccoli and Dawson got into the fridge the other night and out of all the possibilities, he pulls out a head of broccoli. The pics say the rest... Yum yum, nothing like broccoli and a dum dum sucker right???

Dawson continues to do AMAZINGLY well. Today is day 51 seizure free!! He continues to make leaps and bounds developmentally right now, but if you want to know the biggest difference I see in him..............

Well, it would be his smile. This kid is genuinely happy now. You can see it on his face and you can certainly see it in his eyes. He is just really really happy. After suffering through thousands of seizures, I guess I would be pretty happy too that im not having any. We are still just awestruck as to what God has done here!!!

On another note, Ashlyn and Katelin both have birthdays this week. Ashlyn turned 12 Friday and Katelin turns 9 on Tuesday. We had a pizza and cake party last night for them ( pics to come soon) and I just can't tell you how proud I am of these two as well.

When your 9 and 12, and both of you have Type I Diabetes, life is a little more difficult. It still pains me to see the process they have to go through each and every time they put food in their mouth. Its just not fair!! First they have to prick their fingers, then they have to count and figure each and every carb they are fixing to consume, then they have to figure out how much insulin they are going to need, then after eating they get to jab themselves with a needle and administer insulin so that they dont die. Such fun right???

Both of them are mature well beyond their years when it comes to managing Diabetes. They are very aware at all times at whats going on with their bodies. We still struggle with really high blood sugars, and on the opposite end, we struggle with low blood sugars as well. Its a constant battle they go through every minute of every day to keep their blood sugars in an acceptable range. Dont take your pancreas for granted people!!! Its an amazing organ!!!

So happy birthday to my two oldest angels. You two girls are so amazing and I am so proud of both of you!!

Our love goes out to all of you and we are thankful for your prayers.

Jeff

A sense of normality

2010-11-09T18:43:00.003-06:00

We continue to enjoy this new journey we are on. A great sense of " normality " has fallen over the house. I say " normality" in that sense because what is normal really?? Everybody has their own sense of what is normal and what is not. I can only say that life without seizures just feels right. We are able to do things we haven't done before ( like actually going out to eat as a family) Interesting concept huh??

As a lot of you can attest to, going out in a public setting with a seizure ridden kid who has the temperament of an Alligator with a toothache is just a bad idea. As a matter of fact the last time we tried it was about two years ago and we swore we would never ever try that again. Its just not worth it.. But Sunday we took Dawson to Chuckie Cheese Pizza, and tonight Madison's school had a special fundraiser dinner at a Rosies. We kicked the idea around for a bit this evening and decided yeah, lets do it. He did just great and I think hes starting to enjoy being taken places and seeing new things.

His little brain is really accelerating right now. You can just see it working overtime to try and catch up. He Currently is around 1 year behind developmentally,but I suspect that gap will close pretty quickly. Just two months ago his communication was limited to one word at a time. Now his stringing words together nicely and is saying some short sentences. "There it is", "I want -----" , "I see sissy", and on and on I could go... Its just really really cool to watch this unfold this way.

Allison and I are still on cloud nine and to be honest, I think we will stay there for quite some time. Over The past three years we have cried a bucket full of tears. God has healed Dawson and now its time to celebrate!!! We are so glad you have been able to celebrate with us. We want to thank each and every one of you who left a comment on the last post. I wish I could explain with words what this support group means to us. We are forever bonded together because we share so many of the same experiences, and the same fears. Our family will remain as vigilant as ever in our praying for your family and children. Your comments touched us in ways that I can never express to you here.

Our praises go out to God and our love goes out to each and every one of you

Jeff

The Day we've been waiting for

2010-11-05T20:08:00.004-05:00

Today we went to Huntsville to have an EEG for Dawson. His neuro ( and we) were anxious to see what his EEG looked like since his seizures have stopped. The hook up process was the smoothest its ever been. As a matter of fact, this is the first time we didnt have to hold him down and fight with him. The Tech at our Neuro's office is the best. We have had this process done so many times at so many different places and there is just no comparison to this lady. She actually got Dawson to help her throughout the process which kept him engaged. He was all hooked up in just a matter of a few minutes and he went right to sleep right on cue.

You just couldn't have asked for any better.

Without further delay, I am proud to announce that Dawson's EEG was completely NORMAL!!!

I can't even begin to describe all the feelings and emotions Allison and I have gone through over the past few hours. Just 42 days ago we were in a hospital in Memphis with a little boy who was having countless seizures daily. 42 short days ago we were there looking at an EEG that was just a mess. An EEG that showed total chaos and constant seizure activity in his brain. 42 days ago we were being told that he needed a portion of his brain removed to give him the best chance of a seizure free life.. and today...

We are celebrating not only seizure freedom, but a completely normal EEG

I knew from watching him this past month that his EEG was going to be improved. I may can not see inside his brain, but I see how fast he is catching up and how he is learning in leaps and bounds.. But i wasn't prepared for this.. So today we cried tears of joy on our way home from a Doctors visit instead of tears of sorrow.

You need proof that we serve a God who is alive and well and still preforms miracles????

Ladies and Gentlemen I present to you Dawson!! A seizure free little boy who in our minds is a warrior.. Who has battled and fought his way through thousands of seizures since he was two months old. Our hearts are litteraly soaring tonight.. Today is conformation of prayers answered.

We have no idea what tomorrow holds for us and we are taking this new journey one day at a time. This is just the best news we could have ever hoped for. Thank you for taking a minute to celebrate with us!! Your prayers have helped make this day possible.

Our love to all

Jeff and Allison

The streak continues

2010-11-03T18:07:00.002-05:00

Today marks 40 days of seizure freedom for Dawson!!! I wish all of you could see with your own eyes what a difference its making in him.. He's putting words together very nicely and even singing songs on the radio!! What a blessing

Much love and many prayers go out to all our friends who are fighting the seizure monster!! We love you guys

Jeff

Spooktacular Halloween

2010-10-31T17:15:00.003-05:00

Its not that we didnt try to take 1000 pictures of Dawson for Halloween.. He just wouldn't sit or stand still long enough to get a decent picture of him... Hence the picture in the car seat.... What a little turkey!!

This Halloween was pretty special.. This was the first year we've taken Dawson trick or treating. In the past hes either been too little, too many seizures, too temperamental. We were too worried about him having a come apart and ruining the Halloween experience for Madion... Not this year though..

The neighborhood my parents live in is considered Halloween Central.. Its the most amazing thing.. Its a giant neighborhood where most everybody participates in the festivities. People literally drive from all over to come to this neighborhood to trick or treat.. Hundreds of people line the streets, going house to house gathering candy.. It it certainly quite the sight!

This year, Dawson came with us. and he had a blast!! Ashlyn kept pretty close to his side the entire time and Allison and my heart were warmed at the sight of our littlest hero going from house to house, carrying his little pumpkin, SAYING TRICK OR TREAT... It was just so normal.. No seizures, no fussing, no behavior problems.. Just a little three year old skeleton, out and about, enjoying something he had never seen before... He really had fun.

At one point, Allison and I looked at each other while the kids ran to one house and said.. " This is VERY cool!!"

Hes doing all the things, that at one time we were afraid he would never be able to do.. He's running, hes playing, hes talking, and now hes trick or treating!!

Glory to God for his mercy, peace, and healing.

Thank you for your continued prayers. We go to Huntsville this week for an EEG... Everybody is dying to know what his EEG looks like since his seizures have stopped.

Jeff

A picture is worth a thousand words

2010-10-26T16:56:00.004-05:00

Not much to say here, The pictures say it all. Today is day 31 with no seizures and you can see the happiness and clarity in his eyes. Allison was out in the yard Saturday with the kids, and these pictures are just a snippet of what she was able to capture. Dawson is just a completely different kid right now and we are celebrating daily!!! He is just so HAPPY!! ( and so are we)

Hope you enjoy

Jeff

Home from Memphis ( What a LONG day)

2010-10-22T18:32:00.003-05:00

First of all the video.. This video was shot shortly after registration. Dawson was running up and down the hall and seemed to be pretty excited about all the animals on the wall. If you listen closely, there is a couple of times he snorts after touching the pig. Way to funny!! The pics are of him waking up from anesthesia. He was pretty drunk for a few minutes which I thought was hilarious!!.

We got up this morning at 4:00 am and left the house by 4:30 to make the 3 hour drive to Memphis. Checked in on time and the rest of the morning pretty much went like clockwork. They went ahead and got the IV in first thing and the girl who did it was pretty amazing. One stick and we were done. From there it was from one waiting are to another and they kept on schedule to the minute. His MRI was supposed to start at 12:00 and they were even a couple of minutes early. Pretty amazing. The MRI itself lasted about two hours which is about an hour longer that what it usually takes him. They were looking at VERY thin slices and also did a functional MRI while he was asleep too. Dawson did great throughout the procedure and we were in the recovery room with him for like maybe 5 minutes. Yep, 5 minutes and he was awake enough to go home.

Another 3 hour drive home and here we are..WHEW!! very long day indeed.

Thanks for all of you who prayed for a smooth trip and smooth MRI.

Unfortunately, we will not get the results of everything we had done today until about 3 days out from surgery. We are still full speed ahead. We will have another EEG in Huntsville in November and that will give us a better picture of whats going on during this seizure free streak were on ( DAY 26!!!!!!!! YESSSSSSSSSSSSSSSSS!!!!!!!!!) Until then, we will count and enjoy every single seizure free day we get!!

Our love to all of you

Jeff

2010-10-20T19:07:00.003-05:00

So yeah, its kind of a one sided pillow fight, but it goes to show how well he and Madison play together now that the seizure monster sleeps. They spend pretty much every evening now doing this and chasing each other through the house. This is a whole lot more fun than counting seizures!!

Needless to say, he continues to do really well right now. I am SO happy for this special little guy!! and shame on me because I haven't even mentioned how well he is doing in school. Right now he is going 3 days a week for an hour and a half. He is getting Speech and Occupational therapy and his teachers say he is doing REALLY well. There was talk a few weeks ago about maybe doing physical therapy, but as you can see, his gross motor skills are exactly where they should be for a 3 year old. So even though he is a special needs child, he sure is teaching us a lot!!

Please remember him Friday as we go to Memphis for this MRI. We tried to set up a consult with the Neuro there but he will be out of town. Allison and I have TONS of questions right now regarding the upcoming brain surgery.

We are in the process of putting together a spaghetti supper/silent auction. All proceeds will go towards him having brain surgery and medically related expenses. We are shooting for a date towards the end of November. ( hope to have a concrete date by tomorrow) If your reading this and live in our area, we are looking for volunteers to help with this event. If interested please let me know. You can leave a comment here or on my FB page if you are able to help out. ( Many hands make light work!!!)

Thanks again to all of you who continue to pray for him. Thats the greatest thing you can do.

Our love to all of you.

Jeff

On a roll now

2010-10-18T20:00:00.003-05:00

Today is day 24 with no seizures!! Needless to say, we are pretty ecstatic around here. We've been so used to counting seizures on a daily basis that were just not sure what to do with ourselves. You can just tell its making the biggest difference in the world in Dawson. He is talking more and more now, he is communicating leaps and bounds, new words are coming left and right, he is coming and taking us by the hand and saying " GO" and then he will lead us by hand to where he is wanting us to go.

Usually this is to the kitchen where he has spied something he wants to eat. Life without seizures right now is a dream!! I just don't know what else I can say about it.

We are still on go with brain surgery in December. We will stay in this mode until his doctors say otherwise. God has placed us in the hands of some of the most amazing neurologists for a very specific reason, and we will follow their lead regarding his treatment. With that being said, please remember him in prayer as we go back to Memphis Friday for yet another MRI that will better point out this area that his seizures are originating from. The MRI itself is not such a big deal but having him put to sleep is always a little rough on us HA!!

We did talk to his neurologist in Huntsville today and they want us to have another EEG done in November to see what is actually going on in there seizure wise since they have stopped. Were hoping for some really good news... ( like a normal EEG)

Until then we are just enjoying watching Dawson.... well.... just be Dawson.

Promise to put up some pics and videos very very soon!!

Our love to all of you

Jeff

Resting

2010-10-12T19:19:00.002-05:00

Still hanging out, all seizure free like...

And enjoying every moment!!

Next week we go back to Memphis for yet another MRI.. More IV pokes, being put to sleep again... YUK. But all of it necessary as we move forward and closer to brain surgery.

Dawson continues to do fantastic right now.. so nice to see his little brain on the move again!! Our love to all

Jeff

The seizure monster sleeps

2010-10-09T20:42:00.002-05:00

Things are still eerily quiet around here. No seizures, no outburst, no Madison screaming because Dawson is attacking her, Nothing being broke in an aggressive rage. Instead, it has been replaced with laughter, playing, running and chasing, throwing golf balls in the house, using the oven door as a trampoline,and lots of other fun stuff..

Very quiet around here, and of course we are just loving it. The biggest change has been his behavior. No seizures= happy little boy. The second biggest change has been in his communication skills. Its just been amazing.

Soooo, while the seizure monster sleeps in his brain.. We continue to celebrate, and we work very diligently on trying to gain much needed ground on the developmental front. Because of the daily seizures, he is WAY far behind!!

Thank you Lord for the break, and thanks to each one of you for your prayers.

Jeff

And the streak continues

2010-10-07T18:22:00.003-05:00

Today marks 13 days seizure free!! I have to say i am a little disappointed in the lack of enthusiasm shown around this blogger world at this marvelous event. I mean, we've been battling seizures DAILY for what seems like forever and out of the blue they have just stopped.. Not even one single comment??? come on people!!

Nevermind me, we have been celebrating enough around here for all of you. In the past 13 days we have just seen a completely different Dawson.. Today has been another day of Dawson talking all day long.. Not all of it understandable, but he knows what hes saying and were able to understand half of it. Its just amazing what can happen when he is not ravaged by seizures. We can literally see the fog lifting in his brain. We get to see the real Dawson.

As a matter of fact, he seems rather " normal." Whatever that is... All I know it that none of us have seen any seizure activity for 13 days. And we are greatful for each and every one of those days.

Ive been around this block enough times to know that this could all end tomorrow. It could end tonight as a matter of fact. I can't even begin to tell you how overjoyed we are right now, and we are trying to soak up every sweet little minute if it.

So, I will say it for you... Congratulations little buddy!! This is your time, Enjoy it!!

Much love to all of you

Jeff

Happy days are here again

2010-10-04T18:41:00.002-05:00

What a great weekend!! and what a great day today too!!

Today marks day 10 with no seizures!! can you believe it?? and what a difference it has made. Dawson is a completely different kid with no seizures. I need to make a correction to my last post.. I had stated that we were going back to the original dose of Zonegran because we weren't liking what it was doing to him. We stayed at the same dose, just started giving it to him all at one time instead of am/pm..

So this small increase seems to be really helping all things seizure related and giving it to him all at once has helped a lot with the mood/violence/aggression/behavior stuff.

In the last 10 days we are seeing the REAL Dawson come out again. Oh my how we have missed him. He is playful and funny and over the last couple of days extremely verbal again. He has talked non stop today. Tonight I was trying to get a picture of him with my phone and he saw himself on the screen, pointed to it and said " Dawson." We have been trying forever to get him to recognize himself and this week he has done it twice. He usually just pats himself and says " baby"

We are just ecstatic to have this time with him with no seizures. We have been fighting seizures DAILY for so long and we are truly thankful to God for this. He is just so..... HAPPY and who can blame him!!

So here's to another day of seizure freedom, and prayers that tomorrow will be seizure free as well

Jeff

Happy boy again

2010-09-30T19:12:00.004-05:00

Call it a fluke if you will, be we decided to go ahead and go back to the original dose of Zonegran he was on before we went to Memphis... and.....................

Already we are seeing our little boy come back to us. He has been more like himself ( yes a few small breakdowns) but other than that he is back to playing games with Madison ( instead of trying to kill her) and he has seemed very happy and pleasant for the most part of the day.

It just goes to show how even small increases and decreases in seizure meds can affect things brain related.

Welcome back Dawson!! We missed you

Now if we can only keep the seizure monster at bay on this dose... keep your fingers crossed!!

Much love to you all

Jeff

Surgery Date

2010-09-29T18:02:00.002-05:00

Well, it took nearly a week but Allison was finally successful in getting the right people at the right time to give us some dates.

Oct 22nd we will go back to Memphis for another MRI. We will have this done outpatient and the scan will be using different kinds of software.

We will then go back on December 13th for the brain mapping process, and surgery. We could be there as long as two weeks which leaves us coming home on Christmas Eve Please keep these two dates in your prayers as we start to gear up for this frightening event. Allison and I believe that God led us to Memphis and these specific people for a reason. If you could only see the way this all came about you would have to agree. We also feel that this surgery will give Dawson his best shot as a seizure free life. God has instructed us to follow, and leave the details to him.. That's what we are trying to do.

Once again, we do not yet know how big of an area they will be removing.. This next MRI should provide those answers and ( in my own mind) have compiled a list of questions 3 miles long that I will try to cover with the surgeons over the next coming weeks.

In the meantime, something very very interesting has happened. His neuro in Memphis looked at the levels of seizure meds in his system and suggested going up on his Zonegran. We did, and Dawson has not has a seizure in five days. I cant even begin to tell you the last time we had one single day with no seizures.. much less 5!!

The downside to this is, is that this increase in Med seems to be having an extremely adverse effect on Dawson's quality of life. Since day one of the increase he has been different. Those who have followed this blog for the past 3 years already know of the aggression and behavioral issues. If this is a side effect of a drug, then Dawson usually reacts 10 fold.

He is having these horrible fits all day long, very aggressive and intentionally trying to hurt people. Not a good thing for a 3 year old. Point is, he is just not happy. As a matter of fact this increase seems to have made him pretty miserable. While we are excited about him not having seizures ( after all , this IS the goal) this is not a good alternative. As bad as it sounds, I would rather see him mostly happy having seizures, than no seizures and him being like this. There has to be a quality of life!!

We have called the Neuro and reported this and they want us to try giving the entire dose at night instead of twice a day to see if that helps. Well give it a go but if this keeps up were going to have to go back to the dose he was on prior to us coming home from Memphis. SIGH!!!!!

So, once again, a couple of specific dates to start praying for. We'll keep you posted.

We have also added a Paypal donate button. Prayerfully consider this and if you can... well you know... It's hard for us to ask this of people but even with insurance, were looking at quite an expensive ordeal. Co-pays, staying in Memphis for two weeks, food, gas and not to mention all the things that insurance is not going to cover.. Im just guessing brain surgery is pretty expensive.. Anyway, every little bit adds up and every penny donated will go to cover his medical expenses.

Thanks for your prayers and we appreciate all of you

Jeff

Rage

2010-09-26T18:51:00.005-05:00

This weekend has been a little odd. Dawson has always had some aggression/rage issues, but this weekend they have been probably worse than I have ever seen them before. Im not sure what the difference is but he all of a sudden becomes violent. Pinching, hitting, biting...... throwing things( lamps, books, toys, drinks) turing over furniture ( kitchen chairs)

Seriously, One minute hes fine and the next minute he is freaking out.. Its as though he is literally loosing his mind ( no pun intended with the looming brain surgery) We just dont know what to do for him.. And the other weird thing....

No seizures this weekend.. None of this makes sense. Usually when the seizures let up a little, he is in a much better mood and frame of mind. Nothing this weekend has made sense with him.. And I just wish there was something I could do!!!

You can tell he can't help it... but at the same time, it puts a bad funk in the house while all this is going on

I guess this is part of life with a special needs seizure boy

Your prayers for a more peaceful Dawson are much appreciated

Jeff

Parolled

2010-09-22T19:21:00.003-05:00

Thats right, we got early parole for good behavior. We were able to leave Memphis and return home. Ahhhhhhhhhh.... There is no place like home. We look forward to sleeping in our on beds tonight!!!

We got to come home because Dr Wheless felt he had everything he needed from the MRI and the seizures captured on his VEEG..

The results are something we have wanted to hear for a long time, but now that we have heard them, it leaves us feeling a little uneasy.

They found an abnormality in his right frontal lobe and they want to do brain surgery to remove that area. Thats about all I can tell you about it right now as thats pretty much all we know. Its unknown how big the area is, its unknown if its a section of the right frontal lobe or if they will have to remove the entire frontal lobe.. Still more questions than answers at this point.

Allison and I are both still trying to process this news.. I mean, its no surprise really. We have certainly read about others having this done during our 3 year stretch battling seizures. ( Mrs Foltz, I will be expecting a phone call from you!!) And after all the seizure meds we have tried and failed.. I can honestly say that there have been conversations between Allison and myself that discussed how awesome it would be if there was something in there they could just cut out and he would be seizure free forever..

BUT... saying that, and then it being an actual reality are two different things!!

Lots and lots to process over the next few weeks.

The plan??

We will return to Memphis and have another MRI done. It will be outpatient this time and it will be similar to the one we just had except they will be using different software to help better pinpoint what they are seeing.

The plan after that will be to schedule brain surgery. The surgeon said it would be a two phase ordeal and we would be inpatient for two weeks. Phase one would include putting EEG grids directly on the brain and do brain mapping to help locate the problem area and places to stay away from. Phase II would be to go back in and remove that area that the seizures are originating from.

Like I said... Lots to process.

Dont get me wrong, we are glad to have this as an option. Like I said, Dawson has failed all the drugs he has tried and Im tickled pink that we may have the opportunity to give him a seizure free life. But the surgery is risky.. It comes with no guarantees, and the right frontal lobe controls a lot of very important things... Like personality for one.. I can't imagine right now at this very moment giving somebody permission to cut my 3 year olds skull open and take out part of his brain..

And at the same time, I can't imagine ever watching my 3 year old suffer seizures/developmental delay/ behavioural issues for the rest of his life either.

Lots and lots of prayer that God will guide us in the right direction as we make decisions that can and will forever alter his life.

There are no re-do's here. Once its out, its out

Thank you again for checking in on us and for your many prayers this week. We are glad we got to come home two days early

Jeff

Memphis Day 2 PM edition/ The fighter

2010-09-21T19:15:00.004-05:00

The day WAS going fine... That is until they decided that some of his leads were not properly affixed to his skull. So it was back to the torture chamber to re glue them back down...

I'm very proud of the way he fought. It takes three people to hold him down and if he could have gotten off that table I'm certain he would have whipped all of us. Three years fighting the seizure monster makes you pretty tough doesn't it Dawson!!!

Anyway, we are now back in our room resting and Dawson is giving the evil eye to anybody who even remotely resembles an epilepsy monitoring tech. And so am I.. Thats right buddy, fight em all!!!

Hopefully he will sleep as well tonight as he did last night! Thank you so much for your prayers this week.

Love to all

Jeff

Day 2 Memphis A.M. Edition

2010-09-21T09:23:00.004-05:00

Day two finds things a little more calm then compared to 24 hours ago. Dawson has settled in and as unfortunate as it is, he knows this routine all too well. Late yesterday afternoon he was finally able to get some sleep and slept the majority of the rest of the day. He woke up for a while yesterday evening and then slept all night long. Poor kid, he was really sleep deprived!!

We were starting to get a little worried about seizure activity ( or lack there of.) He went all day with out a seizure and when your here to specifically capture seizures and you dont have any...... well that stinks.. This is the only time you pray for seizures HA! Only parents of kids wth epelipsy could understand this but we want him to have lots of seizures this week. The more he has, the better the Doctors will have an idea as to whats going on, in return the better the treatment.... He did finally have some seizures last night before going to bed. It was one of the harder ones that held and we are glad to get one of those nasty things on film. After the seizure ended, i was looking at his EEG and even though the seizure had stopped, his EEG looked crazy!!! All the lines were spiking all over the place and it took a while for them to nomalize again. Just goes to show that even though the physical part of the seizure has stopped, the chaos in the brain continues!!

A neuro psycologist has been in twice to do some evaluation type things. I think they are trying to get a very specific idea as to where he is developmentally. To be honest, its heartbreaking to go through this process. Listening to him ask Dawson question after question after question and the percent that Dawson knows the answer to is pretty small. I mean its not like we dont know he has developmental issues, but being hit in the face with them is no fun. 3 years of having seizures is taking a toll on his little brain.

Were waiting on the Docs to round this morning. Im anxious to hear what he has to say today..

Pics from above are Dawson finally crashing yesterday afternoon, a little playtime next door in the monitored playrom, and EEG showing seizure activity during sleep.

Thanks for the continued prayers

Jeff

Day 1

2010-09-20T10:59:00.003-05:00

Were here, but its been a rough start. Our day started at 4:00 am as we had to be here from the hotel for a 5:30 am admission. That process went smoothly enough. Actually, the check in process was quite smooth compared to what were used to in Birmingham. But thats about where the good new ends..

We were first in line for the MRI this morning and they had a hard time getting a vein for his IV. It was quite the struggle!! His MRI went fine and he woke up good and then it was off to the torture chambers to get hooked up for his VEEG. I gotta tell ya, the older he gets the harder this process gets. He is so strong and he fought the entire time. I had to hold his feet and Allison had to hold his head and we had a hard time keeping him down. He is hoarse from screaming but the worst of it is over.

The good news is.. This place is wonderful so far. The staff here are outstanding and the facilities are top notch. We have yet to meet with Dr. Wheless. We are waiting on him to come up here and give us the scoop on what else we will be doing here this week. So were here, the MRI is complete, he is hooked up and so now the waiting game begins... Come on seizure monster.. show yourself..

Will update later

Thanks for your prayers

Jeff

Memphis Bound

2010-09-14T19:02:00.004-05:00

I mentioned in an earlier post about Dawson's Neuro wanting us to get to Memphis to see a different Pediatric Neurologist to get another set of expert eyes on Dawson and his ever evolving seizures. Once again, God's timing is always perfect. Everything aligned just perfectly and there was a last minute cancellation and we are getting to go this coming Monday and will be staying the week at Le Bonheur Childrens running the gambit of tests. If it weren't for this cancellation, it would have been the end of November before we could get in to see him. We have been witness time and time again to God's hand spinning us in the directions HE wants us to go and this is no different.

We certainly dread the long week, taking a VERY active 3 year old and hooking them up to a bunch of wires glued to his head, which in turn takes away the freedom. We dread, as always, him being put to sleep, the MRI's, the PET scans and who knows what else they have in mind.. BUT..

We are excited that Dr. Wheless will be looking very closely at him and hopefully coming up with some great ideas that will help this little boy.... Baltimore this past weekend.... Memphis this coming week.... My my my aren't we the little traveler's now???

Keep us in prayer as we try to prepare mentally, emotionally, and financially for a long and draining week.

I do remember last year being at UAB for 8 straight days with him hooked up to a VEEG.. I also remember looking over at Allison on the drive home and I remember saying to her... " If we can survive being in that jail cell for 8 days and still be married..... we can survive anything!!!" So 5 days shouldn't be that bad right??

Our love to all of you

Jeff

Picture marathon and a lot of catching up

2010-09-12T18:52:00.006-05:00

Well, we survived. Barley it seems at times but we made it. We tried going to bed early Thurs night because we had a 7:00 AM flight to Baltimore from an airport thats an hour away from here. Madison wasn't doing well Thurs night and even got sick before going to bed. We got up at 3:30 Friday morning to start getting ready to head to the airport and Madison is still sick. It was her first time flying so I dont know if she was really really nervous ( which she tends to get) or if she had some type of virus. We made the flight in time and she even got sick on the plane.

Thankfully Mr Dawson slept most of the flight to Baltimore. The time he was awake he was kicking the seat in front of him which thankfully was empty.

Our trip to Baltimore was for Allison's cousin who was getting married. They put the entire wedding party up at this beautiful mansion that was built in the 1700's. and as you can see from the pics above my little princess was one of two flower girls. The wedding was beautiful, the food and after wedding party was like stuff you see on TV. It was just fabulous!! I even got to sneak in a dance with the most beautiful flower girl I have ever laid eyes on.

We were a little worried at first ( we thought we were staying at a hotel) that Dawson wouldn't have anything to do all weekend. Boy were we wrong. He spent the entire weekend walking throughout the mansion. Up and down stairs, all around the grounds, up and down stars, up and down the halls, and did i mention up and down all the stairs?? His seizures have gotten so bad that I just dont feel safe with him on stairs right now. He is very sturdy on his feet but these stupid seizures are knocking him down and I was so afraid he was going to have a seizure while climbing on these stairs. Sooooo... We made sure to tag as closely behind him as possible the entire time. Very draining to say the least but what fun!!!

The flight home was perfect and once again Dawson slept for the great majority of the flight. Thank you God for blessing us with a sleepy little boy during both flights!!! So here we are safe and sound. The weekend was awesome but Allison and I are both absolutely drained. Its been a long time since ive felt this tired!! Hopefully sleep finds us early tonight because tomorrow starts all the catching up on work and other things around the house that got undone this weekend.

Seizures still about the same. It still seems as though they are evolving. He is having numerous myoclonic jerk type seizures throughout the day but is still having one or two hard lengthy tonic type seizures immediately followed by spasms type jerking. They are leaving him dazed and it takes a few moments to get his wits about him again. So painful for us to watch.

We did call his neuro before we left for Baltimore with concerns about these seizures and she is thinking she wants to refer us to a Neuro in Memphis to get another set of eyes on him.. Maybe I am wrong but thats kind of like saying I just dont know what else to do for your son.

Your prayers are appreciated and we are so thankful for those who prayed for a safe and mostly uneventful trip this past weekend. More pics will be trickling in from the weekend im sure.

Our love to all and God bless

Jeff

I'll take Happy Birthdays, hard seizures, and first days of school for $500 Alex

2010-09-07T19:39:00.002-05:00

First things first. Dawson had a very happy birthday. The weather was perfect, he was in a great mood the entire time, and only had one seizure during his party. We stayed outside the entire time which is where he loves to be. We'll be putting some pics up soon but all in all the birthday was a huge success, and Dawson had a lot of fun.

We have are now off the clobazam and the number of hard seizures that are wiping him out have subsided to about one a day. He had a big one last night during dinner and these things are just heartbreaking. He still has the spasm type seizures that we are so used to seeing and as bad as it sounds we much rather like seeing those as opposed to those long seizures. Hopefully as the days progress the hard seizures will disappear completely.

In other news, Dawson started his first day of therapy at school today. He is going for an hour and a half three days a week and today he did just wonderful. He didn't fuss or cry and it sounds like he cooperated for the most part. Its just so hard to believe he is actually big enough to go to school.

We will be traveling this weekend so say some prayers for us. We are flying out of Huntsville Friday morning at 7:00 am ( cough cough) and will be in Baltimore for a wedding. I have to say i'm a little nervous about Dawson. First of all we are going to have to wake him up around 4:30am ( which is NOT going to go well) and then who knows how the rest of the day will go. This will be his and Madison's first time flying but when your stuck in an airplane with a seizure boy with behavioral issues......

Just pray for us ok??

We will be flying back home Sunday and Im sure we'll have some great stories to tell about our trip.

Thank you for all your prayers through these difficult days. God is the light that we follow through the stormy weather!!

Our love to all

Jeff and Allison

Yet another failed drug

2010-09-03T18:42:00.003-05:00

Well that certainly was a short experiment. The Clobazam run didn't last very long at all. The fact is, is that since we introduced what was our best hope at a miracle drug, seizures have gotten worse while on it. Since the start a few weeks ago, Dawson's seizures have been on the increase with intensity. He is not having more seizures so to speak, but the ones he is having are getting lengthy and they are affecting him more. On average he is having anywhere from 2 or 3 a day up to 12-15 a day.

In the past, his seizures for the most part have lasted only seconds, we have watched them over the past couple of weeks get longer and longer and longer. We recently did an increase of the Clobazam as scheduled and they have gotten even worse. He had one today that lasted around a minute and they have been wiping him out afterwards as well. Hell have a big one and then immediately fall asleep. They are also leaving him dazed and literally knocking him off his feet when he is playing as well. So we called his Neurologist this afternoon and as we already suspected, we are to discontinue use of the Clobazam.... Another failed drug!!! Not only did it not help, it made things worse.

ACTH.. failed
Keppra.. failed
Topamax... failed
Zonegran.. failed
Banzel... failed
B6 Therapy... failed
Lamictal...failed
Vigabatrin.. failed
Clobazam.. failed

I have no idea whats next.. whats it gonna take?? Needless to say, this evening were feeling a little deflated about this beautiful little boy who is attacked relentlessly by the seizure monster on a daily basis.

Tomorrow our hero turns 3. Were having a family get together over here and since the weather is supposed to be absolutely awesome tomorrow, we plan to be outdoors ( Dawson's favorite place)

Pray for us as we work with his Doctors to try to figure out whats next..

Happy birthday little buddy!!!

Jeff

IEP Meeting

2010-08-28T07:37:00.002-05:00

Ok, so last week Dawson had his evaluations with the city school system for special education services since he will be turning 3 next Sat and Early Intervention stops when the child turns 3. We actually had to leave him alone with the evaluator for over an hour. Yes, drop him off with a stranger and leave....she got the deer in the headlights look from us, not expecting to leave him and then the but he has behavior issues and what if he has a seizure, yada yada yada. So we left him, hesitantly, but he did great. Did not fuss or cry or act out at all. Just played and cooperated and was a sweet boy.

Wednesday was the IEP (Individualized Education Program) meeting. Jeff was unable to get off work so I had to go alone...bummer! I sit down and when we get started, she slides over the comprehensive report sheet and starts explaining what the numbers mean and it sinks in and BAM hits me hard... Dawson is officially labeled as Developmentally Delayed...I start crying right there. I knew this, I knew he was delayed, I knew he is not like the other 3 year olds out there, intellectually I knew this...but emotionally, in my heart, I was somehow unprepared, it broke my heart..is still breaking my heart, I am crying right now as I type this. I can't talk about it without crying (David and Jenny, this is why I didn't mention it Thurs.), I can't even think about it without tears streaming down my face. I am not in a good place with this yet. After I pulled myself together, we continued on and, long story short, he will start out by going 3 days a week for 1 hour and 30 min each day. We can go back and change the plan and add or take away as needed. So, this is great in that he will be able to receive help and hopefully catch up. He is doing better on what almost seems like a daily basis right now as is, so with the added weekly services he should really bloom.

I don't have any beautiful words on this or some sort of uplifting comment, because I am not there yet emotionally. I am, however, thankful that he will be getting special therapy 3 times weekly...so much better than every other week. He is such a special little boy who deserves so much...

Dawson's 2nd year

2010-08-22T14:34:00.000-05:00

Blogger Buddy Award

2010-08-20T20:46:00.002-05:00

Deb ( from one of my favorite blogs) has passed the blogger buddy award torch to me. I think the rules are that I am supposed to say 7 things about myself and then pass it on to somebody else.. Its much easier to talk about Dawson, but I am a good sport and will play along.

Debbie, thanks for thinking about me.

1. Im afraid of bats ( there are several night fishing stories that coincide with this)

2. I am an outdoors freak. I would rather be outdoors than anywhere

3. I am very musically inclined and play acoustic guitar as well as piano

4. My wife is 10 years younger than me.

5. Im a huge MMA fan

6. I have a bad track record for picking out pets. ( the ones I have picked out are either extremely dumb or have horrible emotional issues)

7. Two years ago I knocked over our Christmas tree trying to show a 10 year old how to do a cartwheel. ( Allison has yet to forgive me for the ornaments I broke) I guess when your 6'5 and weigh over 200 lbs,doing cartwheels in the house is NOT a god idea.

I am passing this on to Heather. She was actually the first person I got to know on here when I started doing this about two years ago. I have watched her beautiful daughter Zoey grow from a little baby into a beautiful little girl. Her story is amazing and I consider them as part of our extended family. So Heather, your up next.

This week has been a busy week for us. We had a neuro visit in Huntsville, we have started Clobazam, and Dawson has been evaluated this week to see if he qualifies to be in the special needs school in our area.. I will give a full update on all this before the weekend is out.

Hope everybody has a good one and we love you all

Jeff

The Shark

2010-08-15T20:17:00.004-05:00

Interesting that Dawson found one of Madison's books that has different animal masks you can put on that coincide with the story line... Even more interesting that he chose the shark mask as his to don... Mind you these pictures were taken several weeks ago but the story line fits with whats been happening around here this weekend.

There is a shark in the house. Teeth sharp and shimmering, sleek and perfectly designed for swift destruction... Quietly swimming in the depths waiting.... lurking... waiting for the perfect moment to strike. And when that strike does happen the surface of our waters violently erupt, over and over until the kill is finished.. Sound a little dramatic??

well maybe just a little... but still...

Yesterday was an awful day for the D man.. He woke with those shark teeth showing and he attacked all day long. There was very little peace around here. He was having these horrible violent outburst. Attacking, attacking, and then would come back for more.. He would snuggle and settle momentarily and then out of nowhere, while cuddling with you, he would attack again. Reaching up and trying to hit and pinch whomever he would happen to be sitting with. Trying to bite things in half... You could just see the frustration. By days end my nerves and wits were completely shot. You can't help but feel badly for him. God only knows whats happening in his seizure riddled brain, scrambled by multiple seizure meds. The chaos that he must feel has to be unbearable to him at times. Yesterday was NOT a good day!!! As always, my prayers last night included prayers for peace for my son. As always, God knows exactly what our limits are, and blessed us with a much better day today. Allison had to work all day and Dawson was chilled and laid back as can be. He spent the day dragging stuff all through the house. Everything he could get his hands on. At one point I tried to pick up the mess but found that he was much faster at scattering stuff than I was at picking it up.. ( I must be getting slower in my older age HA ) Eventually I gave in and just let him be.. The house is a wreck but he had a good time.

Allison had to work today and the minute she walked in the door this evening the shark surfaced again and it was round two until he finally fell asleep just a few minutes ago.

Not sure what were going to do about all this. I know he can't help it. We have tried every form of encouragement, punishment, you name it and we have tried it... Ultimately we do whatever we have to do to help him get through the moment but I gotta tell ya, Im very nervous as to what the future my hold regarding these violent outburst.. I know he is fixing to turn 3 ( can you believe it!!) but what about when he's 5, when hes 9, what about when hes 17??? Will he still have these kind of issues??? Will we be able to " handle " him??? Once again, I know it sounds a little dramatic, but I think about these things because it is possible that this may be our reality regarding him. I think it is SO important during this time for us to continue to focus on the fact that we have zero control..... and God has ALL control. The prescription???

Trust, have faith, and lean hard on him. Repeat as necessary

In the meantime, the littlest angle has started kindergarten. Hard to believe that she is old enough to be going to school. The pics are from her first day last week and she is loving it and having the best time!! Very proud of her.

Thanks for checking in. Continue to pray for us please.

Jeff

Tee Tee NOT in the potty

2010-08-10T18:31:00.004-05:00

When your ,not yet potty trained, two year old takes off his diaper and Tee Tees on whats on the second picture.........

Whats showing on the first picture is what you get....

Heading to comcast tomorrow to see if i can ahem.. exchange HD DVR boxes for one that hasn't been whizzed on yet...

Oh Dawson, what are we going to do with you???

Jeff

A Good Day

2010-08-05T20:23:00.003-05:00

Today has been one of those remarkably good days. He's been good all day. Seizures have been present but for some reason every once in a while, despite those nasty things, he has a good day in spite of them. Today has been one of those days for him.

Hes been jabbering and talking up a storm. Mommy this and Daddy that. Sissy sissy sissy something or another. Love you's, miss you's and anything else he can think up to talk about. We ventured out this evening to the splash pad and he had a ball playing on the playground there. Yes indeed, its been on of those days. Just a regular day with a happy little boy. Thank you God for that.

We cut a watermelon the other evening and made the mistake of going off and leaving it unattended.. As with most things left unattended around here....... Well you get the picture

So this evening we sit and bask in the wonders of one of those good days with Dawson and pray for many more down the road.

2010-07-31T13:06:00.002-05:00

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Dawson at a birthday party yesterday. Sorry for the poor quality cell phone video footage but I can't seem to scrape up the 200 necessary to purchase the droid X phone I have been lusting after... Have I mentioned that I turn 40 in August?? That means I am having a birthday soon........ Usually people buy presents........................... and 40 is kinda a big deal................... Hint hint.............

So this birthday party yesterday was for one of Madison's friends and we took the D man with us and he had a ball... He ran and played and went down the big gigantic slides they have there all by himself.. He played with other kids and he never even bit or attacked them... amazing!! HAHA

He really had fun and we had a blast just watching him be a little boy. Notice him saying and signing more as soon as he hit the bottom.. What a cutie huh?????

Seizures have been worse over the past few days in the sense that they are holding on to him longer, and he still has these terrible fits a few minutes before some of them. BLAH!!! Oh man what I wouldn't give for a few minutes alone in a dark alley with the seizure monster!!!!

Our love goes out to all of you

Jeff

Nervous

2010-07-29T20:01:00.003-05:00

We are approaching the start date to getting Dawson on Clobazam. Of course I get online and read everything I can about it.. I have a way of "over educating" myself on this kind of stuff.. Out of all the drugs we have tried, this one seems to be the most inline, as far as treatment goes, for his seizure type right now. Buuttttttt... I keep reading things like this.

"We tried this medication for a short period of time. For us it was a disaster. Did nothing to help control seizures and on top of it Alex became very volatile with aggressive outbursts."

"Lauren was on this for 6 months when she was 3 1/2. It was a terrible drug for her too. She became really oppositional and aggressive on it to the point that we did not have much quality of life as a family. No one admitted that it would cause such problems (she was on a low dose 10mg/day), but as soon as we got her off, she became a much nicer child! Coincidence? I dont think so."

"Ana is currently on clobazam for the second time. Does she have seizure control - yes... at the cost of our family's quality of life. She screams, bites herself, hits, doesn't sleep, and on and on and on. I'm sorry, I know you were looking for some positive. I know some kids get sleepy on it, that wouldn't be so bad? Ana is up to 20mg a day but even at lower doses we had problems"

"We put our 3 yr old boy on 20mg per day and at first it worked well but after 3 months he worse than ever.His behavior has changed and he constantly dribbles,he struggles with his speech,and is totaly lethargic.We are now going to try to wean him off it.Looking at the long term effects had i known what i know now i wouldnt have gone near the drug.Desparation to find a solution sometimes make us oblivious to the risks which in a lot of cases means that the outcome of using a drug can be worse than the reason or illness that we are trying to prevent in the first place."

GRRRRRRR!!!

Ok so heres the thing. I realize that for every bad story, I can find one that says the drug caused no behavioral issues and worked perfectly. I know this. BUT ( and Im going on nearly 3 years of history here) If rage, aggressiveness, or behavioral issues are even mentioned as a side effect, then its trouble for Dawson. He seems to be very sensitive in this area. I mean currently we are on Keppra ( very low dose) Zonegran, Banzel, and B6 and we already have more issues in this area than we can stand. It really effects all of our quality of life. We don'd dare try to go out and eat, we just have to pick and choose where we take him right now. Short trip to the store...... OK for the most part. Running errands??? completely out of the question.

Sooooooooo.. Yeah, Im nervous about Clobazam.

( and excited because maybe, just maybe, this one will be the one)

Your prayers are so appreciated

Jeff

And sometimes......

2010-07-27T20:12:00.003-05:00

And sometimes he eats normal things like spaghetti instead of grass and paper towels

And sometimes..... instead of trying to pull the ears off of the dogs he actually lays down and loves on them instead.

Sometimes things seem almost "normal" around here

The things Dawson eats

2010-07-24T21:08:00.002-05:00

First things first... Dawson's foot did return to normal size and the bruising went away a day or two after the last posting. Apparently he does not do well with fire ant bites.

Now, on to the post..

It's hard to believe how badly Dawson's need is to be orally stimulated. Honestly, I actually thought that as time went on that this would get better. If anything, its worse. He ALWAYS has to have something in his mouth. Just this week, here are some of the things I have found him chewing on :

Kleenex, paper towel, paper plate, cardboard, pencil eraser, dog food, paper clips, Blue Crayola Marker, grass, Madison's arm, Katelins finger, a guitar pick and a he chewed a playing card to pieces.... and that's just THIS WEEK!!

I don't understand the correlation between seizures and this oral stimulation thing. But its real, and as he gets older its becoming a huge challenge. We have yet to fight the " Paci battle" because honestly as long as we see a paci in his mouth i know nothing bad is going in there. He has never swallowed any of these things.. He just chews on them.... ALL DAY

We have bought the latest and greatest " chew toys" for kids and guess what??? hes not interested in those. Its the off the wall stuff he wants to chew on.. Basically all the things listed above along with any toothbrush he can find. I just wish there was a way to stop this behavior!!

We ventured out this afternoon to our local splash pad to beat the heat today. We didn't really know what to expect because Dawson is pretty funny about things that are water related... For example, he will sit in the tub and play all day long if you let him. He doesn't mind being in there with the shower on either but try to put him in his little kiddie pool and watch out.. He hates it. All things considered he did pretty good. He didn't really mind the water too much but he wasn't a big fan of it splashing in his face. As long as one of us were holding him it wasn't too bad and when we saw him sorta starting to get antsy and fussy we jetted out of there pretty quickly before he could make a huge scene.

He is still doing really good on talking. He is consistently putting words together now but we still have ALOT of challenges ahead of us with this issue.. Still lots of frustration on his part with him not being able to communicate with us when he needs to. Unfortunately the only way he knows how to react to frustration is with violence. Needless to say, speech and behavior still remain our two biggest obstacles.

We are in the process of getting Clobazam from a pharmacy in Canada. In the meantime we are weening Banzel. I'm trying not to let myself get too excited about Clobazam. Dawson's neuro was pretty excited about him being on it as its Tailor made for his seizure type ( according to her) but we have been through so many drugs and failed them all so Im not getting excited just yet... let me rephrase...... We remain prayerfully hopeful that God will work through this new drug to stop these nasty seizures.

Thats about it for us this weekend.. Trying to stay indoors as much as possible because its so dang HOT outside!! I can't believe I spent all Winter long wishing for hot Summer days again...

Much love to you all

Jeff

Bitten

2010-07-20T14:33:00.004-05:00

Well its bound to happen.. Anytime you let a kids run around in the yard barefooted in the south, they are apt to get bitten by something right?? Were thinking he got into some fire ants and is having some sort of allergic reaction to the bite. That explains the swelling but not too sure on the bruising?? Anyway, were watching it closely and hopefully his foot will return to its normal size without doctors intervention... We did dose him with Benedryl ( which can lower seizures threshold) but as my beautiful wife said... " so maybe he has one or two extra seizures... lets get his foot back to its normal size"

Which also reminds me of a conversation we had not too long ago. It was an evening and Allison were both getting in from work and as always " the question" is asked.. So... how many seizures did Dawson have today?? On this particular evening the question was asked very casually and the answer was 5 seizures.. My response was a bit celebratory and I remember saying ALRIGHT!!! and then it hit me...... and I laughed to myself... Have we really become so accustomed to seizures that I am going to celebrate only having five seizures today?? Thinking back to two years ago, if you would have tried to tell me that one day I would be happy that my son only had five seizures in one day, I would have called you crazy!!! But I guess that's really where we are... Happy that it was only five and not 25.

I guess as time goes by we have certainly become numb to the "number" of seizures he has a day. He has good days and he has bad days. We celebrate and praise god on the those good days. Although we don't celebrate, we're a work in progress on still praising God on the bad days too.. Almost 3 years into the battle we have indeed become a little numb to the number, but we still find it impossible to find any numbness whatsoever in watching him have these things.. The seizures he had in my arms today was just as painful as the first one I ever saw him have. I don't think that will ever go away. There is nothing that can numb watching your child have seizures. No numbness for the damage they do. But there is HOPE!! and HOPE is what we hold on to daily.

Thanks to all of you who pray for us

Jeff and Allison

A Saturday Monster

2010-07-17T15:21:00.003-05:00

Yeah, today so far has been one of those days. Little man is completely out of sorts today. And when Dawson is out of sorts... LOOK OUT!!

He has been acting out violently towards everybody in the house today ( mainly pinching and hair pulling) I can't tell you how many times Ive seen him run out of the room mad today and I have yelled to the rest of the girls RUN!!!! because i know hes hunting one of them down to unleash a fury of seizure monster madness. Stupid seizures are definitely getting the best of him today..

Dont dare ask him anything, don't dare offer him anything, there is nothing that can be done to fix it when he gets like this.

Its just one of those days!!

Jeff

Banzel???? not impressed

2010-07-13T19:45:00.002-05:00

I think Dawson's seizures have a mind of their own. They do what they want to do, when they want to do it. Never mind the brutal cocktail of meds we concoct and shove down his throat. Nothing we give him seems to help. Me, ever the optimist, likes to take the approach of, well, just think how bad it would be WITHOUT the meds... But some days even Im hard to convince he wouldn't be better off without the meds... So i guess you have figured out by now that our new drug we have been on ( Banzel) is doing absolutely nothing... Except making him a little more cranky than usual.

Can't blame it all on the meds though. I know seizures have a big play in his crankiness. Just the other day he was fussy, I mean really fussy... Very irritated and all out of sorts. After about a couple of hours of this fussiness he has a pretty hard seizure and immediately afterwards.... TADAAAAAAAA were back to happy Dawson. Its as though he can sense one building and he finds it very irritating. Who can blame him right??

The good news... These days finds Dawson more happy than not. Yes he has his moments BUT the better part of the day is spent with him running around, chasing his sister, playing with his toys, climbing on everything in the house, looking at books ( he loves to be read to) Wrestling with Madison, eating everything is sight, dancing, singing, and being what I consider to be an otherwise normal almost three year old. Other then the few behavioral outbursts, Im telling you, you would find it very very difficult to see Infantile Spasms, or any other seizure type in him. Speech delayed?? Yes other than that?? no problems... and that my friends is what I still consider to be a MIRACLE. Praise God

Other news... Madison and Katelin got glasses this month... Always something right???

Not much excitement going on in our little corner of the world right now.. and I couldn't be happier!!

Love to all

Jeff and Allison

Summer stuff

2010-07-05T21:32:00.005-05:00

Hope everybody had a great 4th of July. Allison and Madison and I went to hang out and watch some fireworks. We wanted to take Dawson but he usually starts going downhill later in the evening. Since the fireworks started at 9:00 ( which it typically past his bedtime) we decided to leave him behind with Grampy so that Madison could really enjoy the show.. Maybe next year little buddy!!!

Our summer days seems to have been packed full the past couple of weeks. Working, kids, yard work, gardening so on and so forth.. just busy doing life stuff. Our favorite time has been late in the evening when it starts to cool off just a little. Every evening we all get outside, Madison and Dawson ride in their Jeep, we pick the garden, tool around in the yard, pick blueberries and whatever else yummy we can find. Dawson really really enjoys being outdoors. If only we could get a break from this awful heat!! Its been miserable hot and the rest of the week doesn't look any better... If you enjoy upper 90's and humidity... then this is a wonderful place HA

Overall, Dawson has been doing really good. Mood is off and on as usual but the good days are out weighing the bad days by a ton... He has "moments" during the day ( usually in the morning) where he just gets all out of sorts but as the day goes on he gets better and better until its sleepy time. Developmentally he continues to progress. Its a slow pace but as i have said before, as long as were progressing and not regressing we will take it. He talking continues to improve and is able to put words together more and more easily.. We have been stuck on one word at at time mode for so long and we are all very excited to see his vocabulary expand like it has been doing. We have always been so proud ( as most of you know) of Dawson and how he has fought tooth and nail to overcome all these nasty side effects of seizures and meds.. We are so very very proud of him!!

He is currently on 3 different seizure meds. Banzel, Keppra ( very low does) and Zonegran. I can't imagine having all three of those drugs in my body.. Talk about brain scrambling!!! and then throw in a bunch of seizures on top of that??? You can see why we are so proud of him that he is progressing developmentally.

Speaking of seizures... Dawson's seizure patterns have been very random. Single seizures scattered throughout the day. A concern that we have is the fact that over the past few weeks we have been seeing clusters of seizures again.. It just makes my heart sick!! Granted he hasn't been doing it a lot, but we were really really really hoping we were past the clusters of seizures days.. There is nothing harder on this earth to do than sit and count seizures during a cluster.. I think during his last cluster he had 20 something seizures. It's just heartbreaking and the seizure monster pulled a fast one on us.. I hate the seizure monster. If only I could meet this beast face to face........ Instead he plays like a coward and hides in the brains of these innocent little children. I hate seizures... and I hate what they do to children and their families.

BUT... I love God.. and he is so much mightier than a million seizure monsters. I don't know why Dawson has seizures. I DO know that its not because of lack of prayer.. Oh there has been prayer.. Days and days and hours and hours of prayers. I have never prayed harder for anything in my life.. So if we have been praying, and he continues to have seizures, then that leaves me to believe there is purpose in all this. As a matter of fact, Im convinced of it. If my son having seizures, can be used to glorify him, even in the tiniest way... then I am all for it.. All that is left for us to do is be obedient and search for his will in all of this.. The truth is, most days I find that very difficult to do. As a father, its almost impossible to watch your own child suffer like this.. But I have found that on the hardest days, if i be very still and quiet, I can hear his voice in all of this and it comforts me, it brings me peace. In those moments, all of this seems to make sense.. Its impossible for me to explain other than the fact there is peace and purpose. A story waiting to be told.. So we are along for the ride, trying to do the best for Dawson, trying to make the right decisions concerning his care and his future.... Yes God gave us the boat.... but were way over our heads here, so were letting him drive!

Thank you for your prayers for Dawson.. please continue to pray for our family

Jeff and Allison

Weekend Stuff

2010-06-27T13:30:00.003-05:00

Were always looking for some excuse to eat something sweet.. Sooooooo...... Whether or not you know it, today has been deemed
" Just because I love you" day and we are celebrating " Just because I love you" day by eating a yummy cake!!

This weekend has been pretty good. Seizures since starting Banzel have been reduced to less than 10 a day where he was having double digit seizures on some days before. Not even close to where we want to be but better is better and we celebrate that. Maybe when we start doing some Banzel increases we will see marked improvement.. He is still having some of those seizures that hang on for a few seconds. I hate those and sometimes they almost knock him off his feet.. The seizures are impossible to predict so very random. I still believe that when he gets upset and has one of his little meltdowns, that that in itself can make him prone to having a seizure.. Here is an example....

He was doing fine.. the four of us were outside picking the garden we came inside to cool off and he brought me some drink mix out of the kitchen and i guess he thought he was going to get to eat it.. I told him no and asked him to take it back to the kitchen. He told me no and then started pinching me.. I told him not to pinch and he kept on. He got his little hand smacked for pinching and he goes into this huge screaming and fussing fit.. followed by a hard seizures and then sleep.... I think being that upset does indeed make him prone to having a seizure. But you can't get through the day without making him upset.. He still needs discipline, he needs to learn how to deal with not getting his way, he needs to understand how to process being told no so what do you do??? I HATE HATE HATE he has to go through this!!!

Talking is still improving praise God!! the other day at my moms he said " I'm ringing the bell" he said it again when she was over here telling me about it.. Its just unbelievable that we have spent so much time trying to get him to say two words together and here he goes skipping two and three words and going straight to the four word sentence. HA We are SO very proud of him and what he is accomplishing. We pray continuously his forward progress continues

God's hand has certainly been on him during his fight with the seizure monster. Please continue your prayers for Dawson and thank you so much!!

Love to all

Jeff and Allison

He did it!! He talked

2010-06-22T21:31:00.004-05:00

Hes been jabbering up a storm today... as a matter of fact, hes had one of those good days that we cherish so very much...

Allison brought him and Madison to eat lunch with me today and he was a dream.. This evening mommy and daddy were trying to have some mommy and daddy time while watching some TV which makes Dawson extremely jealous... He distracted us just long enough to point to Allison's nose and then said just as plain as day... " This is my nose" what a wonderful moment!!

He finally put some words together and said his first sentence.. it seems as though over the past couple of days hes been really really trying to talk again and just earlier he was poking me and saying my daddy, then poking mommy and saying " my mommy"

We are just overjoyed!! He is finding a way to break through the seizures and the meds... Somewhere amongst the chaos in his head is this wonderful little boy... and today he's been fighting to get out!! We know he's in there and this is a huge leap for us..

We pray for more words and more sentences!! as i type this.. his talking continues on.. praise be to God

Fathers Day

2010-06-21T20:09:00.004-05:00

Fathers Day weekend was just wonderful for me. I got to hang out with the kids, managed to get some things done that i had on my to do list and I thank my wonderful wife and kids for making the day really special for me. Me being a father is harder than I ever, ever imagined it would be. When I was younger, from the outside looking in, being a father seemed so easy. I have learned that it is one of the most difficult, yet rewarding things a man can do. Being a daddy in this family is even harder. As a dad, my natural instinct is to protect. Moms have the nurturing spirit, but a father is a protecter and a provider. Watching Dawson suffer daily.. and watching Ashlyn and Katelin have to deal with the every second of the day managing diabetes has taken a lot out of me. In a second, if the choice was given, I would take the seizures and diabetes from them and give it to myself. Like i said, my instinct is to protect and I can't protect them from this, and deep down in places I dont ever talk about it kills me. Watching them have to go through this just kills me.

But then i watch them go through this, and i watch them prevail. I watch Dawson battle through seizure after seizure after seizure. I watch him battle through wicked drugs that have awful side effects. I watch the girls battle through numerous blood checks daily, injections of insulin, having low blood sugar, having high blood sugar. Im watching these young kids go through this on a daily basis and i see how strong and determined they are. As a father i couldn't be more proud. I have four of the most incredible kids a dad could ask for!! ( and an amazing wife who keeps me together through it all)

Allison is on vacation this week and she is hanging out with the kids.. Poor thing, Dawson was really rough on her today!! He has not had a very good day today. Lots of seizures so far and VERY clingy. I dont think shes been able to get off the couch with him for more than a few minutes. We got a little pool for him to splash around in and he hates it. He LOVES taking a bath but hates the pool. Go figure. Hopefully he will be in a better mood for her tomorrow.

We talked to his Neuro this afternoon and we have decided to decrease his Zonegran. Its not doing anything as far as we can tell and I know most of these meds can hinder learning and development. Soooooo were decreasing and adding Banzel which has its own fun side effects. Dawson seems to be very sensitive to the side effects so were kind of anxious to see what happens.

We are prayerful and hopeful that maybe Banzel will be his magic drug..... we'll see

In the meantime, despite the seizures, he is learning.. It is slow but it is an always steady progress. Hes learing to count and is still saying new words every now and again. I really dont care how slow we go forward... just as long as we dont go backwards!!

God continues to bless us and i am so proud to be Madison, and Dawson, and Katelin, and Ashlyn's daddy!!

Jeff

Summer, shots & stuff

2010-06-17T19:37:00.004-05:00

Today we took the littlest angel to the Doctor to get her shots so she can start Kindergarten. Those of you who know me already know how I feel about these shots. I have always had the stance that I do not hate vaccinations, I hate they way they are injected so recklessly and so abundantly in a two month babies. Madison has never had any kind of adverse reaction to any shot so I put my money where my mouth is and we sat her on the table so they could inject her with numerous live viruses all in the name of kindergarten.. Never even a mention of possible adverse side effects, never even offered any information as to what they were injecting.. just poke and push, poke and push, poke and push... UGGGG

ANYWAY.. thats a whole nother tirade... She was SO brave and teared up a bit, but never cried.. A stark contrast to the last time she had a shot and had to be held down by three adults. You would have thought somebody was cutting off her legs with a hacksaw last time.. Not this time though. and the reward??? All you can eat ice cream all day long today.

Our little buddy Dawson has had a pretty good summer so far. Seizure are still running rampant and some days are good with only 4 or5, and some days are not so good with seizures getting up into the twenty somethings. Almost every evening we get outside and pick the garden, pick blueberries, and catch lightening bugs and He LOVES it.. He gets out there and follows Lucy ( black lab) wherever she goes. He is definitely an outdoor kid!!

His mood continues to be pretty good as a whole. As long as nothing bad happens, he does pretty good. The only problem is that it just doesn't take very much to set him off.. Running around in the yard having a blast..... trips and falls... Party is OVER!! He has a complete come apart and the good times are over. It happens just that fast.

Dawson's sleeping is incredible and has been for quite some time. He generally goes to sleep around 9:00 and is sleeping all night long.. I remember ( and i still feel for those who suffer from this...) those spells where the kid would not sleep. Probably the most miserable we've been is during those times. Its hard enough to deal with the seizures, meds, developmental delays, and behavioral problems on a full nights sleep... Take away the ability to get a good nights sleep, and you have misery!!

God bless those of you who deal with what you deal with on no sleep.. So very thankful Dawson at least sleeps through the night. ( knocking on wood)

Thank you for checking in. Thanks for those who pray for Dawson. Please continue to pray that God will intervene and remove these seizures from him..

Jeff and Allison

Thankful for days like these

2010-06-11T20:36:00.003-05:00

Every once in a while we get a day like this.. A day that seems like a dream. A day where our son, who is relentlessly attacked daily by the seizure monster somehow seems to turn the tide and actually beat this thing down with a stick.. Today, seizures have been very few and even more important, today the firestorm in his brain, accompanied by a cocktail of meds were kept at bay and allowed him to be a little boy.. plain and simple, just a little boy.. He has been in a great mood today and this evening. Even to the point he was able to go to his sisters softball game. We never take him because he becomes very irritated very quickly and makes these events kinda miserable.. But not today.. Today he was content to run around, across the bleachers,playing in the grass, sucking on his ring pop, and after about an hour and a half he was ready to go..

He didn't do his usual screaming bloody murder, pinching and hitting everybody in site. He didn't try to bite his pacifier in half.. He simply came up to us and said " home" as a matter of fact.. hes been talking the English language along with "Dawson language" all day long today.. Hes just been a regular kid today... We LOVE days like these and cherish them. We love the days where his true personality overcomes the seizures and the meds.. God gives us days like this as if to say.... I'm still here, Hang in there, I'm going to do big things!!

sigh...... I love days like today!!

This week has been crazy. I have been on vacation this week and have been hanging out with my three angels along with my 14 year old niece from out of town.. So me and the 4 amigos have been together just enjoying each other and doing stuff around town.. Money has been very tight so we've had to be creative in keeping the kids occupied this week.. After 5 days with 4 energetic girls I am exhausted and think my fuse is a little shorter than usual. BUT, i would not trade this time with my kids for anything.

We did finally get some blood work results from our last Neuro appointment. Dawson's levels of Zonegran in his system are at an effective range but there is some wiggle room for an increase. And since hes still having numerous seizures daily, we have added a morning dose of poison to his daily regimen. Too early to tell if its helped any but maybe seeing a slight improvement this week at times... well see how the rest of the week goes.

The Diabetes sistes are still doing well, and we continue to be so proud of how these two handle this medical condition and just because Madison is healthy, I don't see the need to leave her out.. She is doing exceptionally well and handles herself very nicely amongst the older children. That little girl is an awesome blessing!!!!

Allison and I are so thankful for those who have been praying for us over the past weeks.

Thank you Lord for letting us see Dawson today!!

Jeff

EEG news

2010-06-04T16:26:00.002-05:00

Were still battling some bug thats been around here all week long. Both Madison and Dawson have had on and off again fevers throughout the day and yesterday evening Madison started vomiting and became very ill for the rest of the night. This morning found her feeling better and back on her feet again but the on and off again fever remains. As for Dawson, fever seems to be his biggest issue and it seems a little worse at night. Im ready to give this bug its eviction papers!!

Earlier this week Dawson had a EEG. The hookup went about as it should anytime you try to glue a bunch of stuff to a two years olds head. As for the EEG itself, Dr Bebin said his awake EEG is not so bad ( but not normal) but when he falls asleep, his little brain is a firestorm of electrical activity. She feels this is part of whats causing some of these learning delays because his brain is not resting as it should during sleeping hours... We are back to using Melatonin to help his brain relax and Im certainly not opposed to taking a snip of Melatonin at night with him... 15 mins and Im out like a light!!!

They also did a blood draw to check his levels of his current meds to make sure they are at effective doses. We are supposed to hear back from them sometime today ( hopefully)

In the mean time, she talked about a new drug that is coming out in the next 6 to 10 months. ( Clobazan) She was excited about this and said there has been a lot of success with this drug concerning his specific seizure type which she is calling Atonic/ Drop Seizures. If his levels of Zonegran aren't where she wants them, we might be adding Banzel until this new drug becomes available. So all in all, a pretty productive visit and its nice to know there is something out there that may help Dawson. I hate the med/drug game but at the same time its very important to keep hope alive!!! As long as there is a med that we haven't tried yet..... there is hope that that med will be the ONE.

God surely continues to bless us. We continue to find miracles in Dawson and our faith continues to be exercised on a daily basis. Your prayers in the areas of healing are much appreciated.

Our love to all

Jeff and Allison

Not so memorial memorial day

2010-05-31T12:26:00.002-05:00

First of all, let me say a big thank you to all those who serve and have served in the armed forces protecting our country. This is your day and my family is so thankful for all you have done..

So far our Memorial Day has gone like this ( and its only noon) I started coming down with some kind of wicked head cold a couple of days ago and today it seems to be getting the best of me. Nonetheless, I have to work today so I am in sucking it up mode and trying to get out the door when I notice on of the car doors is standing wide open.. I think to myself.. Did i really leave the door open all night?? and then upon further investigation, I notice that on the two other cars we have, the doors are open on them as well.. Yep you guess it, somebody walked up, got into our cars ( which were unlocked) and helped themselves to a DVD player and a bible cover... The DVD player I get, but taking the bible cover off of Allison's bible and leaving the bible behind..... Having a little trouble understanding that one... They would have benefited from taking the Bible along with the cover... Who steals a bible cover???

Call the police to file a report which makes me late for work and then I get the call from work that Allison,who took off today to spend with the kids is home vomiting and needs me to come home and help with the kids... This is not what I had envisioned for our holiday!!

Allison is sleeping now and hopefully she will wake feeling a little better.

Tomorrow we head to Huntsville for an EEG. Its been a while since we have had one done and his Neuro wants to see if there are any changes. His seizures have been a little different as of late. Some of them are harder and instead of the very brief head dropping and arm flinging up, they are holding on a little longer and leaving him a little dazed looking in the eyes at times. Hopefully we can get some answers as well as a new direction. We've been on this current drug therapy for a while now and We think its time to scrap what hes on and move on to something different as we are seeing no results.

Please pray for us tomorrow as we head to Huntsville ( DVDless mind you) and that we will get co-operation from Dawson during the EEG. We need a change for the better and are still very prayerful that God will intervene and slay the seizure monster.

Our love to all and thank you for checking in on us

Jeff

Dawson dancing

2010-05-18T19:42:00.003-05:00

Brace yourself... Dawson knows the stanky leg.

In other news..

Madison graduated preschool this week. We are so proud ( as you can imagine) of this little girl.. Allison and I talk all the time about how she got the best in both of us ( whatever thats worth lol ) ... What an amazing little girl she is. She is so incredibly smart and witty. She has a heart of gold... She is just a really really special kid!!

Seizures?? blah!!! about the same. Good days, OK days, and bad days.. No rhyme or reason to them. One thing that's a little concerning is that some of them are starting to hold on a little longer. Body stiffens, eyes glaze over and not that I care for ANY seizures, I really don't like these!! Other than that, our little hero is doing OK all things considered. This month is seeing improvements in speech. Nothing major, hes not learning and saying new words in leaps and bounds, BUT he is saying new words and the words he already knows are very fluent now and hes really communicating very nicely when it comes to basic things he needs. Hes also showing some good signs of being ready for potty training ( which we've started) He goes off to be by himself to use the bathroom, takes his diaper off immediately after peeing in it... things like that.. Soooooooo hopefully we will be doing some serious potty training soon.. Come on Dawson you can do it!!

So we continue on, waiting, hoping, and praying. Thanks to all of you who pray for us

Jeff and Allison

some pics of Dawson

2010-05-13T16:48:00.006-05:00

Things around here have returned to at least some type of normalcy. Ashlyn is following in her sisters footsteps with controlling her diabetes and continues to show off her bravery. ( the picture above is Ashlyn and Katelin featured on the front page of our local newspaper. There was a nice article about them and dealing with diabetes) I have been such the proud daddy and showing them off to everybody i can think of.

Not much change in Dawson unfortunately. He is progressing, but at a VEERERRYYYYY slow pace. But progression is progression and well take it. Not satisfied, but well take it considering the alternative. I have to keep reminding myself that although this year has shown there are some delays, he is still a walking, talking miracle to me. When you think about the statictics and what he SHOULD be like..... He is still a miracle. He has numerous seizures daily and his two biggest delays are speech and social/behavioural issues. Other than that, you could never tell anything was going on with him at all. We still pray constantly for God's healing hand to touch our son and heal him of these seizures forever.. My faith tells me that one day will happen. The peace he gives us while we wait in indescribable. Sure, there are frustrations, setbacks, and even anger sometimes that we cant do "normal" things like going out to eat, going to church, going and watching the girls play softball, even going to Walmart is an issue because of the behavioral issues. But underneath all of those emotions, lies peace...

Were not sure what the next steps are for Dawson. The preliminary diet his Neuro put us on seemed to make seizures worse. I know that makes no sense, but the numbers tell the story. I know they made his behavior worse because now he couldnt eat all the things he wanted and Dawson doesn't do anger well.... at all!!!!

Please continue to pray for us as we continue to muddle our way through this horrible seizure world and all the nasty stuff that comes with it.

Pics above are Mommy and kids on mothers day and some pics of Dawson with his hat. He has started to love wearing hats
( as long as he can wear the backwards) what a cutie huh???

Thanks for the love and prayers

Jeff and Allison

Resiliency

2010-05-02T14:28:00.004-05:00

Just amazing how resilient kids are. Way far more than I am now a days. Just one week ago, Ashlyn was lying in a hospital bed recovering after being life flighted to Vanderbilt Hospital. And today, not only is her ravenous appetite back, eating us out of house and home, but today we resume horseback riding. Watching her ride today really made my heart smile because I know how truly happy she is when she is riding.

Congrats Ashlyn for not only recuperating so quickly but for being so very resilient!!

In other news......................... wait for it..........................

Mr Dawson slept in his new bed, in his own room, and just did fantastic!!

Since Dawson no longer has clusters seizures after waking we decided wed go buy him a bed, put it in his room, and see how it goes. He has been sleeping with Allison and I every night since the seizures started at two months old. His seizures were Always centered around going in and coming out of sleep so we have always kept him right in our sights so we can monitor and count seizures.. My bed felt a lot bigger last night without Dawson in it.. YESSSSSSSSS!!!!!!

Hopefully he will continue to do well sleeping in his room. He only woke up twice last night which we thought was pretty good for a first time. Seizures continue to be awful. Yesterday was a not so good day as by the time he went to bed the seizure count was up to 16.. Please continue your prayers for this beautiful kid. He is so amazing, and he too has shown incredible resiliency. Is it obvious were proud of our kiddos??!! ha

Our love to you all

Jeff

New direction

2010-04-28T18:41:00.002-05:00

First A quick word about Ashlynn.

She is doing remarkably well. Her blood/sugar numbers are still running on the high side but they are working on getting her insulin doses dialed in.. Its a tricky game!! the big thing is that she is giving herself her own shots. and has been since about day 3 of her diagnosis. I can't even begin to try to explain with words how PROUD of her I am. I sat in awe the other evening at supper as she prepared her insulin pen, and then injected herself with insulin in her stomach.. I never in a million years thought she would be doing that this early in the game... She is a brave and she is strong

Katelin continues to do really well with her diabetes management as well. Proud of both of those girls

Now on to Dawson..

I would love to report that since starting the modified version of the modified Atkins diet that we have seen remarkable changes in seizure activity. The truth is that if anything they have gotten worse.. Very very frustrating to watch this go on and not get any better no matter what you do. We are so ready for a break from seizure. His development has come to an absolute standstill and its just heartbreaking.

The other evening at dinner, it hit me just how crazy our lives are getting to be... Katlein was eating one thing and we were trying to figure up carbs for her... Ashlyn was eating another thing and we were busy counting and figuring carbs for her... And then Dawson was having a seizure now and again in between all that.. Counting carbs, units of insulin, and seizures....

WHEW!!!

But we made it. we survived. Thats what we do around here. This is our New normal and although we don't welcome it with open arms we DO look forward to seeing where God will take us with this.. What an adventure!!

3 of my kids are fighting a battle that requires their attention every single day from the time they wake, until the time they sleep. Probably for the rest of their lives. But tonight, my kids are healthy in spite of it all.. And for that I praise God!!

Your thoughts and prayers for my family over this past week are much appreciated.

We love you all

Jeff

Ashlyn

2010-04-23T20:49:00.005-05:00

What a 24 hours!! I'm exhausted, i am mentally and emotionally drained, behind closed doors ( and once on the side of the road) Ive cried buckets of tears and for tonight all i want to do is sleep.

Ashlyn had been sick for a few days, went to the doctor with a bad looking throat and tongue and was being treated for strep throat. She was even a little puny when she was over here with me this past weekend but not much to worry about. I got the call Yesterday morning that Ashlyn was being admitted to the hospital here locally due to dehydration... Sounded a little odd because she had only thrown up a handful of times over the past few days.. I went to see her on my lunch break yesterday and what I saw laying in that hospital bed didn't even resemble my daughter.. She had lost a lot of weight ( and shes already a skinny girl) her eyes were sunken, her cheek bones poking out, she could barely keep awake, she was breathing very heavily and if I have ever seen a sick sick child, this was it.. I visited for a bit and headed back to work... Knowing in my gut that something was severely wrong with her... You just don't look that sick because of a virus, or strep throat... I was on my way back to work when i got the call..

Her blood sugar was 916 ( normal blood sugar range is 80-180) and she was in Diabetic Ketoacidosis. I was told she was being life flighted from our hospital to Vanderbilt University in Nashville Tennessee...... I never ever expected this... Most of you already know my 8 year old Katelin is in her second year of living with Type 1 diabetes and now the thoughts of Ashlyn having to endure this were just completely overwhelming for me... Infantile Spasms, and two diabetic children??? are you kidding me!!!!

Ashlyn had probably already arrived before I was even able to leave town and her mom was en route as well.. I know what she looked like before she left, and I could only pray she would make it to Vanderbilt in time to get help... Instantly the phone calls and prayers started flooding in as word spread through our network of family and friends and God delivered her safely and thank you to the wonderful people at Vanderbilt who has been taking wonderful, top notch care of her.

When I arrived, she was in PICU and they were busy stabilizing her and already had her on and insulin drip. Her blood sugar was in the 400's and they were busy getting her fluids and getting vitals back within human limits again. By the time we went to bed last night her blood sugars were back within normal ranges and this morning when I saw her she looked just like my Ashlyn again.. Feeling better but still very tired and weak.

Tonight she was taken out of the PICU unit and placed in a regular room with plans on coming home tomorrow with a new friend for life....... Juvenile Diabetes. Please pray for her and its slowly but surly starting to sink in with her whats happening.. This is going to be difficult for Ashlyn and all of us. A very big pill indeed for an 11 year old girl to swallow. She has been taken off of her insulin drip and started getting her shots today.. She will get insulin injections at every meal and at bedtime.. I have to be honest... I never realized just how tough Ashlyn is. This past 24 hours she has shown incredible bravery and toughness and although we all are sorry she has to endure this, we are at the same time extremely proud at how hard she fought and how well she is doing..

I had a very long talk with God during the trip alone to Nashville and I have to say that i was not very receptive at all to this new journey, this new path. I don't understand it, I don't get it at all. Why my family?? why my children?? I feel as though Im being drug out to deeper waters and i didn't even have time to grab a life jacket... Another lesson in faith?? trust???
Another attack from the enemy??? Lots to process!!

Tonight i am thankful to God for restoring my daughters health.. I pray that she will learn through this,to lean heavily on him during the difficult times she is sure to face. Thanks to all of you for your thoughts and prayers for Ashlyn and my family as we begin yet another adventure

Jeff

Three out of Four

2010-04-22T21:38:00.002-05:00

Today Jeff's oldest daughter, Ashlyn, was diagnosed with Type 1 Diabetes. They are at Vanderbilt Children's Hospital and I will be joining them tomorrow. Please pray for Ashlyn and for my dear husband, this is the third out of four children to be diagnosed with a serious disorder. He is emotionally drained and feeling a little overwhelmed. Ashlyn is doing better and should be able to leave on Saturday. The families are well versed in the care of a diabetic child, so that gives us a little bit of an upper hand. We turn to God for guidance and strength during this difficult time and just ask for your prayers. Thank You for your love and support.

Allison

Godly intervention

2010-04-21T19:37:00.002-05:00

I love these kind of stories!!!

Because of Dawson's special needs we have really struggled with being able to go to church and be actively involved. Dawson cant sit through the service with us because he doesn't understand he has to be quiet. When you try to make him be quiet that in return makes him mad, which is even a worse situation. So usually when we do go as a family, one us sits in church and the other wanders around outside with Dawson. Lots of fun right??

A few Sundays ago I mentioned to mom about the possibility of the church providing an " aid " for Dawson during church hours. Somebody who would be there with him, just for him. Somebody who understands exactly what his needs are and can be there with him the entire time. I mean after all, I can't very well just take him down to the nursery, say " Hi there, this is Dawson, hes probably going to be a big hand full, your probably going to have to ignore the rest of the children in the class and hold him the entire time, Oh and by the way, hes probably going to have several seizures while hes here too.. See ya in two hours"

So mom talks to the children's director who immediately sprang into action trying to find an aid who would volunteer to come every Sunday and be with Dawson. I have to admit, although impressed with her resolve, that I wasn't completely optimistic about her actually finding somebody who would volunteer their time to do this every Sunday morning. God has once again proved just how little I know, and how he provides for our needs when we turn to him!!

The children's director called the University and spoke with one of the professors who teaches childhood education. Told him of our situation and asked him to ask his students if anybody was interested in doing this. One girl volunteered and went the next day to meet the children's director who in turn called me to happily tell me she had found somebody who wanted to do this. That was yesterday, and today I called the girl, who in turn came by our house this evening to meet and hang out with Dawson. She is a senior and majoring in childhood education and wants to be a kindergarten teacher here. She was truly excited for the opportunity to be with Dawson and we couldn't have been more impressed with her. She is our kind of people!!

As a matter of fact she is coming over tomorrow to do some actual babysitting so that Dawson will be even more comfortable while around her Sunday. Just another way God has intervened and provided... Every time i doubt, God says yeah well watch this!!

Thanks mom for getting the ball rolling!! Thanks Stephanie for all your efforts. God has used you in a mighty way to minister to our family!! And to Jordan, volunteering to sit with a special needs child every Sunday for two hours....... what can i say to that??? WOW!!!

Please continue your prayers for Dawson. Lots of seizures today!!

Love to all

Jeff and Allison

Busy little bees

2010-04-16T21:29:00.002-05:00

We have been so busy!! its incredible all extra stuff that goes on once the weather gets nice... yard work, Allison and I working to death, softball, the list goes on and on!!

Quickly about Dawson because it feels as though im going to fall asleep while writing this...

Not too many changes in him.. We had a neuro visit last week and we are leaving his meds alone this time. The biggest change is in his diet... We are starting a modified version on the modified Atkins diet.. She feels as though going from one million carbs a day ( which is what he eats) to only 10 carbs a day is just too big of a leap and would make him extremely unhappy! ( WE AGREE)

so we are cutting out all sugar and all white flour products to start... So far its been pretty easy and he will heartily eat lots of different types of fruit such as strawberries, bananas, pineapples. loves salads and weve been able to find bread that fits into this diet as well... Well try this for a month and see what happens. I guess if nothing happens we will try taking more carbs away.. Well see

Please pray for success during this dieting period. We really need to get these seizures stopped. For the longest time Dawson has been age appropriate in all areas ( which is a miracle) but as he gets older.. were starting to see a pretty big gap between what hes doing and other kids his age are doing.. For me its heartbreaking. the words " special needs child" is being said more and more these days. His main special needs are speech and he seems to have some social/behavior issues as well.. Bottom line is we need seizure freedom. The seizure monster is literally stealing him away from us.. Im not satisfied that he can run, jump, throw, feed himself, say lots of words, play games, etc etc, its not enough!!! although we praise God for these miracles, its just not enough.. Early Intervention in our area is swamped and as of right now speech therapy is only happening once a month. Its not NEAR enough.. We are looking into other forms of getting him the help he needs. Unfortunately my insurance does not cover it and it will all be out of pocket. Great, yet another expense!! Well do whatever it takes though... He has to have more than once a month.

Hes an amazing little boy.. Full of fight. Full of life. He has overcome so much, but has so much more to overcome. We can only try to do what we know to be the best for him... The rest we leave totally up to God..

So please continue to pray. We need God to intervene and slay the seizure monster

Our love to all

Jeff and Alliosn

Easter Pics and naked in the dishwasher

2010-04-09T18:23:00.013-05:00

Happy Easter!!

2010-04-02T21:15:00.002-05:00

I love Easter!! I love the Spring time!! I love the fact that everything turns green again and comes to life. I love the fact that my savior is alive today. Not even death itself could hold him..

Happy Easter everybody. Wishing you all a blessed day of reflecting on a risen savior

Jeff and Family

School Meeting

2010-04-01T20:18:00.002-05:00

The meeting with the school board wasn't exactly what i expected. We got to meet with them, but it was more of a gathering of information than anything else. Long story short they wont do the actual evaluation until he turns 3 which is in September. The program sounds ok so were hoping he qualifies.. Actually wait... I hope he doesn't qualify, because that would mean he has no developmental delays right?? Seriously though we do hope he qualifies because he does need help with speech if nothing else.

One thing Dawson has started doing is singing!! Mind you he doesn't sing the songs word for word but hes started singing. How fantastic!! I think his favorite song is the Blue's Clue's song. He does the hand motions and everything. We still celebrate and awe over every new thing he does. i don't think that will ever go away...

Tonight finds him running throughout the house chasing after Madison. He has that look in his eye that if he catches her there is going to be trouble, but God graced Madison with speed.. He knew she would need it!!!

Dawson has a hair cut appointment Saturday so we promise to put up some pics and videos after the little guy is looking dapper again. I know its been a while since we've shown him off but he is in pretty bad need of a haircut.

Thats about it for us.. Nothing new going on and we continue to pray God will once again grace us with seizure freedom. We will hold steadfast until he does.

Love to all of you

Jeff and Allison

Getting well

2010-03-30T20:06:00.005-05:00

Dawson finally is over the hump. He's been generally not feeling well this whole week. Snotty nose, can't breath, irritable, so on and so forth. And to make it worse, theres really not much we can give him on the med front. Most of the over the counter cold/allergy meds can lower seizure threshold so we really dont risk it and just let his body fight it on its own. He always wins but there is usually a few days there where it always seems to get the best of him. All this to say, hes doing better and the past few days he has been in a better mood.

Not much change in seizures. They are hanging around and some days are better and some days are worse. Even on the bad days were counting our blessings because he continues to thrive and do very well developmentally. Yes, there are delays here and there, there are things he should be doing that he is not but, there are things he should be saying that he doesn't, BUT all in all, considering how many seizures he has had, and considering how many he still has, we are THRILLED with what he has accomplished. He can run, jump, feed himself, communicate needs, he tells us he loves us, even better than that, he shows us he loves us with hugs and kisses. He plays with his sisters and for the most part, if you met Dawson, you would never ever know he has a seizure disorder, much less one as devastating as Infantile Spasms. yes we are VERY proud of Dawson and how fun it is to watch him grow and blossom.

The things he isn't doing, we are dedicated to getting him there. Speaking of which...

Tomorrow is our meeting with the school system regarding Mr. Dawson and where he will be going to school. We are hoping to get him in the special needs preschool where he can get one on one therapy during the school day. We really feel this is the best option right now. My hope is for him to be able to be able to attend regular school with regular kids and for him to be just a regular kid himself... I believe getting him into this special needs school now will help him accomplish that goal later.

Well let everybody know how the meeting goes tomorrow evening.

Say a few prayers for us and know we love you all

Jeff and Allison

sickness

2010-03-24T11:07:00.002-05:00

We've been kicking around this cold back and forth to each other for a little while now. We thought Dawson was going to be lucky and miss it but Nope. He started sounding gunky and you could tell the past few days he just has not been himself. More clingy, more fussy, and just wants to sit and be held. So after a night of horrible sounding coughs,and a visit to the Dr, Dawson has the croup.

Hopefully he will get over it quickly because unlike Madison ( who you could never tell was ever sick) Dawson is not a very good patient. We've gotten spoiled and grown accustomed to Happy Dawson.. Hopefully he will get back to his old self soon.

As a side note, we have a meeting scheduled with our school system on March 31st to see if Dawson can get into special needs school here. I'm kinda torn on this because Dawson has fought so hard to overcome all these obstacles. Seizures too many to count, and yet his only delay is speech. Yes there are some behavioral issues that need addressed as well, but as I have mentioned before those are 100% better since weening down Keppra. But the other side of that is, if he can get in, he will get one on one therapy ( including speech which he really needs) so I'm leaning towards hoping he qualifies. Its the best thing for him right now. Say some prayers for us regarding this matter please. Also pray that Dawson kicks this illness very quickly!!

Thanks for stopping in to see how were doing!!

Love u all

Jeff and Allison

Dawson "the goat"

2010-03-19T13:08:00.003-05:00

Somebody please tell me my seizure boy is not the only one who does this...

I have AFFECTIONATELY ( that was for Allison) nicknamed Dawson... The Goat

The reason why?? Its not because he eats good. Although his eating and appetite have been pretty good of late. Its because he eats EVERYTHING... Most people with a 2 1/2 year old would kill to get rid of the pacifier..Me?? As long as I see a pacifier in his mouth, it means nothing harmful can go in... So its a safety blanket for me and him both. HA!!

Dawson, because of seizures, has always been very orally fixated on things.. he always has something in his mouth.. Paci, toothbrush, fingers, shirt, etc, etc. But what gets him his affectionate nickname is... Kleenex, napkins, balloons, those elastic hair thingys that girls use to put their hair up, tape,plastic, Blue felt tip markers ( that one was fun!) sucker sticks,rocks, and anything else that will fit into his mouth. He always spits it right out on command but I'm really hoping this will pass with age. As he gets older, his mouth will get bigger!! which opens up a whole new variety of goat edible type things...

Still having a stretch of good days.. The other day only one seizure was seen which is a huge improvement, although it was followed the next day with about 10... Very frustrating!! Dawson is becoming increasingly better at coming and telling us what he wants as opposed to fussing about it while we play mind guessing games... His favorite request are cookies, juice, and suckers.. Not the best diet i know but Hey we are trying to reward him for actually saying words and communicating.. His meltdowns are minimal now compared to what they were even a month ago. God has blessed us with a beautiful boy who has the sweetest personality ( although Madison would disagree at times) and he has also blessed us with Madison who watches over him like a hawk and will do anything for her brother!! ( which makes me wonder if some of the "goat" items are coming from her??? HA!!!

Beautiful weather has arrived as of yesterday and Dawson absolutely LOVES playing outdoors. Chasing the puppy, playing in the dirt, running up and down hills, and eating sticks and rocks!!

Hope all of you have a great weekend and we are truly thankful for those who check in and pray for our family... Please spend some time meditating and praying for
Hudson,Regan, and Landon. I know ALL these kids need lots of prayer time but these 3 specifically continue to weigh very heavily on our minds..

Love to all of you!!
Jeff

still movin along

2010-03-13T10:42:00.004-06:00

Things around here are still about the same. Dawson continues to do very well and thrive despite numerous seizures throughout the day. We have recently increased his Zonegran again and still no real big changes as far as seizures go.. It is so hard sitting around wondering when these things are finally going to get better.. I know they are, its just a matter of when..

Madison started running a fever a couple of days ago with a pretty bad cough so we made the decision this morning to go ahead and take her in and have her looked at. She has a touch of pneumonia and now were thinking were glad we went ahead and went in on a Saturday before that got much worse.. Hopefully Dawson will not get that bug!! that would be disastrous!!

We are so blessed to have him doing as well as he is. He was laying in bed this morning pointing to all his different body parts and saying their names and watching him do these things ( the same things that originally we thought he would never be able to do) still has that WOW factor for me. I just don't think that kind of stuff will ever get old.

Met a new family this week who is just starting this seizure journey. Please stop by and check them out if you haven't already, put them on your prayer list, and let them know your thinking about them please. I am amazed at how eerily familiar their story is in these early stages. Out of all the kids Ive read about, the beginning to their story very closely resembles the beginning of ours. We got the pleasure of speaking with them the other evening and it was a good opportunity to trade some good info back and forth.. you can check them out at:

http://landonmichaelstory.blogspot.com/

Say a prayer for Madison that she will recover quickly and also that Dawson doesn't catch it. That's the last thing we need right now.

Our love goes out to each of you

Jeff and Allison

Groundhog Day

2010-03-06T08:10:00.002-06:00

I know we haven't done a very good job of updating recently and for that I apologize to the few who check in and see how were doing.. The fact is, there just hasn't been a whole lot to blog about.

Its almost like that movie Groundhog Day. You know the one where he wakes up and every day is the same...

Its not quite that bad, and as far as some things are concerned, groundhog day is not such a bad thing. There just hasn't been any changes in Dawson and therefor leaves my simple mind with little to talk about.

Seizures?? yes and still daily. Scattered randomly throughout the day. That's the groundhog day that is not so good!!!

All in all, just as always, Dawson continues to do extremely well despite the stupid seizure monster. Slowly, but steadily, he continues to do and say new things. Progress doesn't have to be leaps and bounds.. It just has to be progress. And for these progressions we give all thanks to God. Just this morning I watched Dawson sit in the floor and try to put his shoes on. Not just try, but was almost successful with one of them. Had the right foot and everything. Then he gets up and comes and grabs Madison's hand and takes her to the fireplace and tells her its
"HOT" These are simple things I know, but they are simple things he wasn't doing a month ago.. Progress is good right??!!

As for us this weekend?? Beautiful weather has once again invaded our little corner of the world and outdoor activities will take top priority. Lots to be done!!!

Also want to do an online Happy Birthday to my best friend and wife Allison. Last week she turned 30 which makes her officially an old woman now HA!! Happy Birthday ALLISON!!!

Thanks for checking in and we love you all

Jeff

Lazy Weekend

2010-02-28T17:43:00.002-06:00

Well, not much new going on around here. Dawson continues to be in better spirits with a few short outbursts here and there. It is great to have him unlatch from me and play with his sister or by himself. It has been a nice weekend with sunny skies so the kiddos have been outdoors. Madison will go out all by herself to play with the dogs or whatever. Becoming Miss Independent! Today they rode around in the jeep while I washed the dogs...fun task for me!! Our golden retriever, Zoe, was in need of a good bath, brush and clipping. She is looking good now, if I do say so myself!!

So, thats about it. Not much to report. Oh, we did go up on the Zonegran this past Tuesday to 100mg. We will drop the Keppra this Tuesday to 100mg am & pm. With every decrease of the Keppra it seems we see more and more of Dawson's personality emerge...we love it!!!

Allison & Jeff

Dinner with Dawson

2010-02-15T20:15:00.005-06:00

Snapped a few pics and video during dinner tonight. He was being such a ham and a very very messy eater!! It was so funny though and we really enjoyed watching him just be.... well, just being him..

Things have really changed for the better the last few days.. Not really seizure wise, but he has just been..... I guess the best way to put it is "normal" if there is such a thing.

He has been so very happy and it seems as though for now the worst part of the storm is over.

He has been in such a great mood all weekend long and continued today. This kid has been jabberin up a storm too. Its hard to know what hes talking about but HE knows exactly what hes saying.. New words started coming on his own over the weekend too. I was changing him and he looked up the the light in his room, pointed to it and said " ight" It seems as though with the little unprovoked speaking hes doing this weekend, and all the jabbering, he is right on the threshold of actually putting a few words together... Were getting there anyway so keep praying... Progress is good and a good mood to go along with it is just absolutely heaven!!

We actually got to go outdoors Saturday and play. The weather here in North Alabama warmed up to a balmy 43 degrees but that felt like Spring compared to what its been like around here. We had some fun finally.. It was short lived because last night, more snow, and icy roads this morning and were back in the deep freeze again.... BLAH!! Oh well ,we will just be thankful for the one day outdoors we got.

Wow how fast things change right?? I mean just days and weeks ago things around here were completely chaotic and horrible and now were feeling on top of the world and other than the seizures during the day hes just normal as can be. I think the trick to this is recognizing the great days for what they are... GREAT and giving thanks to God for that day.. And in the darkest of days..... well, we really have to lean on him to make it through...

Today has been a great day!!

Sorry for the poor quality of pics and video. They were snapped with a cell phone but I think you will get the point of how much fun he was providing.

Love to all

Jeff and Allison

Cabin fever

2010-02-10T18:34:00.006-06:00

Winter in the south is not supposed to be like this... A freak snowstorm a couple of days ago that dumped 4 inches in a matter of a couple of hours, and cold ( ok, cold for north Alabama) The weather here since December has been awful. Lows in the 20's every single night this week, Highs only in the mid 30's for the next seven days... I am sick and tired of being stuck indoors!!

I used to scoff at people who claim to have " seasonal depression" but now I'm kinda thinking there might be something to it.. I know its way to early but I am so ready for Spring... or at least more seasonal February temps.

Dawson has had a kind of back and forth week. The weekend was pretty miserable. Both Saturday and Sunday he only wanted to do this... The look says it all and its almost as if hes trying to hide from the seizure monster

Anything other than this would not work at all. Allison, bless her, was pretty much confined to having what I affectionately named " the leech" attached to her all weekend. If she tried to leave him........ well lets just say it was a long weekend indeed.

After the weekend things began to improve. and today?? Grampy says he had a super day today and this evening it has continued. He and Madison are watching Diego and riding the scooter through the house. They play this game where she is the mommy and Dawson is the baby.. He calls her mama and wants her to pick him up and carry him everywhere... hilarious!! Especially since Dawson almost outweighs her now. Its nice to see things kind of level off a little bit and take a breather. My parents came by the other night so that Allison and I could sneak off to the movies. We don't get to do much " dating" anymore but I think I found a girl who babysits and has been sitting for a little boy in our area that has Lennox Gastaut. If everybody is comfortable, Allison and I are going to do more "dating" Even if I have to DRAG her along!!!

We increased his Zonegran a couple of days ago for the third time and it seems to be doing OK. Still having single spasms peppered throughout the day but if I overheard correctly... None today!! Thank you Lord for this seizure free day. We will take everyone we can get and we continue to pray we can start to string some seizure free days together again.

I have found myself overwhelmed the past few weeks. Ive been kind of moping to myself and even feeling a little sorry for myself in this seizure/med saturated situation. Nothing breaks my heart more than to see my son sensing a seizure coming. Or to watch him have seizures, or to see him completely frustrated because he cant tell us what he wants or needs. I haven't cared lately how much better he has it compared to other people out there... He has seizures everyday and its heartbreaking and I hate them!! Yeah, Ive been in a little bit of a funk lately to say the least. BUT, I saw this sign today on a church billboard. When you live in the Bible belt, signs on church billboards are a pretty common thing but there was something different about this one. God used it to speak directly to me.. Its amazing the ways and the people and the things God will use to speak to and direct you if you will allow him to do so..

The sign was simple... " Don't pray for an easier life................. Pray for more strength instead."

Just exactly what I needed to hear today

Jeff and Allison

Early Intervention Eval

2010-02-05T21:52:00.002-06:00

We had our friends from Early Intervention come out today for a visit.

The speech therapist who sees Dawson once a month ( she does this out of the goodness of her own heart just to make sure he is doing ok) mentioned to the E.I people that maybe Dawson needed to pick back up on his occupational therapy. At one time he was getting this once a week but as of his last two evals... Well he scores to high on his evals to receive services.

So they came out today to have a look see. I told them over the phone before arriving that our main concerns right now were speech and behavioral issues. Well, they show up and they sit in the floor with Dawson and hes going through their little " challenges" one after another at lightning speed. Then I start talking about seizures and meds and the mood swings, and the fits of rage, and Dawson is just sitting there playing and being the SWEETEST thing you have ever seen. Oh he was flirting, giving hugs, giving kisses, jabbering up a storm, smiling, laughing, clapping for himself... Just being a big ham.

I know when those two ladies got in the car to leave ( after Dawson blew them sugar all the way to the door) they must have talked about how absolutely crazy I must be to even mention behavior problems with such a sweet little boy like Dawson........... Gimme a break!! Dawson your a little stinker is what you are!!

The miracle of the thing is this.... There is no telling how many hundreds of seizures Dawson has had over the last two years and yet his fine motor skills are fine, his gross motor skills are fine, his social skills are fine ( usually) cognitive skills are fine... Everything is still fine with the exception of speech. Absolutely mind blowing!! Allison and I were talking the other night about his terrible day at the doctors office and how he must have known before hand that we were going there.. I have said all along that he understands everything we say. To test this, I asked Dawson to go to the kitchen and bring me a bag of chips. He waltzed into the kitchen, I then hear him rummaging around in the pantry, after a few seconds, here he comes with a bag of Doritos... Smart as a whip this kid is!!

With that being said, they did get to see that he is definitely behind in his speech. They are going to start occupational therapy with him regularly as a precaution and we will be amping up the speech therapy full blast now. We only have 7 months before he turns three and then he will be dropped from the E.I program.

Through them, we are also going to meet with the school system and get him started in the special needs preschool. We are very excited about this and know that it will give Dawson a whole new perspective on things. We are so glad to finally be able to get him around some other kids ( because he really is very social) and to know he is in a safe environment with medical supervision gives me a great sense of peace about him going... This will be the first time since he has been born that he has ever been in somebody elses care other than an immediate family member... Exciting , but still frightening.

So pray for us as we get ready to transition into some new stuff in the upcoming months..

Praise to God who shows us daily just how awesome he really is!!

Jeff and Allison

A not so good day

2010-02-02T17:55:00.002-06:00

The day started pretty rough...

We knew the waters would be a little choppy with all the Dr visits and travelling and such. We were hoping that Dawson would be in a good mood and maybe the come apart he would inevitably have at the Doctors office wouldn't be all that bad.

So much for that plan A

Dawson woke up screaming and crying ( which isn't unusual) and we were waiting for the
" Ok, Im good and awake now and in a better mood; sorry Mom and Dad for being grumpy yet again" but that never came. He was all sideways and not doing well at all while we were all trying to get ready for the 1 1/2 hour drive.

We figured once in the car, with the Backyardigans DVD going, all would be well....

Wrong again!!

He pretty much screamed and cried all the way to Huntsville, screamed and cried and threw fits while in the waiting room ( oh how fun) and things didn't get any better when we went back to be hooked up to the EEG. Once hooked up he did manage to cry himself to sleep for about 10 minutes. So we got 10 min sleeping and 20 min screaming and crying. Not a good ratio.

Now on to the good stuff...

His EEG looks a lot like it did while at UAB a couple of months ago. While awake, it looks good but when he falls asleep........ CHAOS

We were supposed to find out about what all was said about his case that was recently conferenced and guess what?? It wasn't conferenced on the date we were told it was going to be. She is not sure when that will take place but will let us know..... Ok that is a little frustrating. A simple phone call to let us know that the conference didn't go down would have been pretty beneficial to me.

We were also supposed see the Speech Therapist for a full evaluation and she called in sick today. That's strike two!! But to be honest, the way Dawson was acting, I am so glad she wasn't there. There was no way that was going to be productive today.

We asked Dr Bebin " Ok, outside of his case being presented at conference, what is YOUR opinion about surgery based on what you know and have seen?" to sum up her words in a nutshell because there was a LONG conversation about this.. At his age, if your going to do brain surgery you gotta KNOW exactly what your dealing with and she just doesn't feel we are there yet. She gave example after example of some of her patients that were in uncertain waters as children but as they got older, and the testing became more sophisticated, and the dust settled a little bit, and the brain matured, it was then that a very clear picture emerged and surgery became a very viable and successful option. She thinks that at this point in time,there is just too much unknown and would not recommend him for surgery.

Then there was a long conversation about the Vagus Nerve Stimulator. http://en.wikipedia.org/wiki/Vagus_nerve_stimulation

She feels that his seizure type makes him a good candidate for this surgical procedure to gain better control of seizurs.

The plan for now?? We are going to continue on the med road we are on for right now. We are very very slowly going to continue to reduce Keppra. She feels that he is very sensitive to the side effects of this drug and is a major contributing factor to his behavior problems. BUT...

She also feels that Keppra is playing a considerate role in controlling those big seizures ( Grand mal and tonic) that we saw several months ago... So as much as we would love to kick this drug to the curb, we kinda never want to see another one of those seizures ever again. So were balancing a fine line between nasty drug side effects and controlling seizures.. BLAH!!

We also talked about starting Depakote. She is going to talk to a metabolic specialist tomorrow and get a second opinion. She said the reason for the caution is she doesn't want this drug to unmask some metabolic issue that hasn't been discovered..... Not real sure what shes talking about here but the possibility of us using the drug is down the road a piece.

The ride home wasn't quite as bad as the ride there but geeze, we were glad to be back home. I think he knew where we were going to begin with. He understands everything we say. He heard us talking about it this week and I think he just didn't want to go, and he sure didnt want to be there once we got there either.

So kinda mixed emotions about the day. Didn't get everything accomplished that we wanted to but hey when is that ever not the case right??

This evening little buddy has been in a better mood, managed a trip to the pet store and drive thru at Mcdonalds, and is contently snuggled up next to mommy. I'm going to go ask him if he minds if I cut in..

Thanks to all that were praying for us today. Feel free to weigh in on Vagus Nerve Stimulator, Depakote, or anything else for that matter.

Love to you all

Jeff and Allison

Weekend stuff

2010-01-30T16:54:00.002-06:00

Seizures are weird now-a-days. Just months ago, seizures were only prevalent after waking up from sleep. Never going to sleep, never in the middle of the day, just coming out of sleep. They came in the form of clusters, always.

Now it seems as though sleeping has nothing to do with it. The clusters of seizures are few and far between ( other than this morning, he went a week without a middle of the night cluster) but now his day is filled with single spasms. One at a time, randomly throughout the day. I mean its the exact opposite of seizures just months ago. I Just don't get it

And besides that, we now know he has the potential to have many seizure types such as Grand Mal, Tonic, and drop seizures along with the Infantile spasms. Always fun having those looming around in the back of your mind. Hoping and praying you never see one of those again.

I say this to say, that when we talk about his case that was conferenced about at UAB this coming Tuesday I hope we get some solid answers. Solid hardcore answers like will he be a candidate for brain surgery. None of this wishy washy stuff. I want black and white, yes and no answers.

Now to change gears a little, just wanted to talk briefly about some of the new stuff Dawson is doing ( good and bad )

We have found that Dawson loves talking on the phone. If you call our house or cell, be prepared to have a conversation with Dawson on the phone. He can carry on a decent conversation as long as you are the one asking all the questions. ( this is good)

Dawson loves Fruit Loops in a bowl so he can dump them out and then eat them off the couch like a chicken pecking the ground for food ( this falls under the bad category)

He has also learned how to drink soda straight from the can ( usually without spilling it) Pretty impressive huh?? ( once again, good category)

He has started putting his shirt in his mouth and sucking on it until it is completely soaked.
( yuk, and bad )

And calling the dogs by name is a pretty new trick. He can call Lucy, and for Sophie he says
"Lufie"

So despite numerous seizures, and behavior problems, ( which are a little better for now) we still have some good things happening for us over here. And we are truly thankful!!

Love to all

Jeff and Allison

Upcoming stuff and the last few days

2010-01-28T18:53:00.002-06:00

The past couple of days have been pretty good. Seizures down in numbers and we have continued to see " the old Dawson" shine through. Today and this evening have been kinda iffy though. He had lots of single seizures today and plenty of fussiness to go with them. The longer it goes the more it appears that he CAN feel the seizures coming on, and whatever is going on in his brain prior to a seizure.... Well it just doesn't seem to like it at all. Can't say I can blame him.

Developmentally were still doing really good. His biggest area of opportunity is of course speech. Speaking of which, we have a Neuro visit this coming Tuesday and while there, I think the plan is to do an EEG and then we will be meeting with the Speech Therapist to do a complete work up and get a game plan together.

Dawson's case was supposed to be discussed with the big wigs at UAB hospital yesterday. Neurologist and Neuro surgeons both were to discuss the findings of his most recent PET scan, MRI, and 8 day VEEG. We have not heard anything back from his Neuro on this yet and she may be waiting until she sees us on Tuesday to discuss the findings. I hate to wait any longer than necessary but it seems plausible that it should be a face to face kind of conversation I guess.

Thats about it for us. Hanging in there and like I said earlier, very relieved to see Dawson running around and playing again.

Thanks as always for your thoughts and prayers for us

Jeff and Allison

Answered prayers

2010-01-26T20:01:00.003-06:00

Just a quickie update about answered prayers. This afternoon, evening, and tonight we got our Dawson back. He has been super happy,running around the house playing with Madison, pulling the puppy's tail, walking around with a laundry basket on his head, and talking on the phone to whoever calls us. There have been no outburst and this is a testament to answered prayers.

We are so glad to see him HAPPY!!!!

We are so thankful to those who specifically prayed about this issue. We needed this break. We needed to see Dawson's wonderful personality again because we really have felt like we were losing him to the seizure monster.

Thank you God for these wonderful moments with Dawson tonight

Jeff and Allison