One Year Seizure Free!!

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)

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

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

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

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

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

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