Dawson graduates

Good lookin boy...... and smart as a whip too!!! He had a great school year, learned SO much and these teachers are AMAZING.. His teacher Miss Russell seemed to fall in love with him from the beginning. So So thankful for this lady and this school.. As for everybody else.. the picture says it all. Everybody is growing up :(

Long overdue update

Well, where do I begin?? It has been so long since we have done an update!!! I guess in a way that is good news. Good in the way that there just hasn't been that much to talk about. We are rolling up on almost a year and a half of seizure freedom!! There was a time when I seriously doubted that I would ever be able to say those words.. "seizure freedom" and yet here we are, and those words just roll off the tongue so nicely....

Dawson continues to flourish. He is talking so good now and is able to carry out conversations with no problems. His teachers at school drone on and on almost daily about how well he is doing. His progress reports are nothing short of amazing and it makes me reflect back to a short time ago when all these tasks seemed either too difficult or impossible for Dawson to do. Now those same tasks are just part of his daily routine and he is able to tackle them with no problems.

Dawson is fully potty trained, can dress himself completely from socks and shoes all the way to pants and shirts. He is pretty much just as self sufficient as any other 4 year old out there. Yes indeed, our little guy is growing up and walking his own little path.. He gets very irritated when people try and help him with things... to the point where he will shout at you.." I CAN DO IT MYSELF!!!" LOVE IT!!!

The only real remnants of that horrible world we lived in, are left in the fact that we are dealing with some behavior type issues. There are really really good days..... and then there are days that quite frankly are just not so good. We've tried almost every type of behavior modification there is to try... ( next on the list is bamboo shoots up the finger nails) IM KIDDING!!! relax.... There just seems to be a disconnect from the fact.... If i do this...... then Im going to get in big trouble... If he indeed does have that filter somewhere... ITS BROKEN!! His biggest thing now is spitting... Yep.. when he gets mad or irritated, he starts spitting.... Put him in time out and he spits while hes sitting there.... Punish him for spitting in time out and he spits on you.... What do you do???

But considering where we could be... I will take the behavior issues any day of the week and twice on Sunday. Speaking of Sunday... HAPPY EASTER to all of you.. How great it is that we serve a RISEN savior... A savior who is ALIVE and still preforming the same miracles he did 2000 years ago while he walked this earth... I know this to be a fact because my son is one of those miracles.. A healing hand that reached over and touched a child.... A touch that healed seizures and healed a family.. Praise God and Happy Easter

Jeff

Potty trained

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

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

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