A New Chapter

Four weeks ago we began a new chapter, one we are not foreign to but one I wish my brave little boy didn't have to endure. Dawson has Type 1 Diabetes. I personally have had a difficult time with this new diagnosis. Jeff's two oldest daughters both have Type 1 so I know full well that everything will be ok and this can be managed but I just felt so defeated by this. My little guy has already been through so much. So many seizures, so many tests, so many procedures...enough! He has been through enough! But he has faced this head on, checking his own blood sugar within the first week and giving himself his own shots within the second. Such courage, such fearlessness! I am beyond proud of him, I am in awe of him, I am inspired by him. The first week was really hard for me, I was kinda depressed and like I said...defeated. I still am not in full acceptance yet, I'll get there, He will get me there, but right now I'm just not. I talked with God about it, He knows Im still angry and a little bitter. I know it doesn't do anyone, including Dawson, any good for me to be feeling this way but I do. I'm working on it, I am. Seeing my little boy persevere helps. He truly is amazing. He has adjusted to this like it was nothing and I guess to him it wasn't too big a deal because he has known about diabetes his whole life. Because his older sisters have Type 1, he knew all about it to begin with, nothing was a huge surprise other than him having to get a shot with each meal and at bedtime himself. The first couple of days were a challenge to get him to get his shot, it would take 20 minutes or more to calm him down enough to get him to let us administer the shot. But now he does it himself like its nothing. He has accepted it, this is life, he eats...he needs insulin, thats it. I just wish my brave little boy didn't have to see what his blood sugar is, count how many carbs he has eaten, figure out how much insulin he needs, get a shot at least four times a day...ITS NOT FAIR!!!!!! He doesn't say that though, thats all me. He only said something like that once and that was on like day two, he was crying and said "mom, I wish it could back to the way it used to be"... me too baby, me too!

Good news!!

Hope everyone had a great holiday season! We certainly did. Saw family, ate too much and kids opened lots of gifts...good times!! Last Thurs Jan 3rd, Dawson had yet another MRI performed at UAB Children's Hospital. I am thrilled to report that all findings were normal!! Other than a little snot in his sinus, everything else looked great!!! God is good! So the next step, in my opinion, is to see about maybe weaning him off his meds since we have a clean EEG and MRI. We will see Dr. Bebin again in March, so I will bring it up then. Dawson is doing fantastic! He is doing great in school. All his teachers have such great things to say about him and are so impressed with how well he is doing and how far he has come. He still has some behavioral issues at home but I think most of that is just being a boy :) He was picking on his sister Ashlyn one day and I told her Aren't we thankful that he can do that, you know at one point we weren't sure of what he would be able to do, didn't know if he would be able to talk and now sometimes we cant get him to be quiet...I'll take it! Much love to you all and God Bless! ~Allison

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.

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!!!