Sept 25 2012--Oh Happy Day!

I posted these yesterday on my FB and meant to do it here for those who don't have that access. What a wonderful day! We are so grateful to the Lord for what He has done in our lives through this whole ordeal. Our God is an awesome God! Much love and appreciation to all of you who have lifted our little boy up in prayer. Also, much love to my husband, my best friend....9 years since we said our "I do"and we are Blessed beyond measure. I love you Jeff!

2 Years Seizure Free

We have been absent for a while.... So in case anybody noticed I thought I would write a few lines in hopes that you will celebrate with us tomorrow.. 2 years seizure free!!! The words just roll right off the tongue.... 2 years seizure free... I just love the sound of that!! Dawson is doing amazingly well. He had a fantastic summer where he learned to swim and was chocked full of fun for him. To say he is doing amazing just really doesn't do him justice.. You would almost have to see for yourself. Seizure freedom has changed our world just as dramatically as the world we were ushered into starting with his first seizure.. ( I love this world MUCH better) Dawson is excelling in school, and very easily carries on sentence style back and forth conversations. After thousands and thousands of seizures, hospital visits, test after test, developmental delays.. we are here... Unbelievable, but were here. We no longer speak much of infantile spasms. It is a world that we lived in and God allowed us an exit door. We took it running and never looked back. Two years later, we remember every intricate detail of every day with seizures, and yet at the same time it seems like some sort of bad dream that you remember you had but have a very hard time remembering any of the details. No longer do I look at Dawson sleeping and worry about him waking up and having seizures, no longer do I worry what is happening in his brain, we don't sweat EEG's anymore because they are always normal.. He is a healthy, happy, smart, worm digging, talking and singing, burping, drink spilling, sister bothering, peanut butter and jelly on my face wearing normal little boy.. and I couldn't be happier.. Happy two years seizure free Dawson!!!! Thank you Jesus!!

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.