The Beauty of Seizure Freedom

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

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!!

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

Yard work is hard work

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

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

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

singing

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

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

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

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

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

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