Momentum

Sometimes, like this afternoon I find myself getting teary eyed over something. I pride myself on trying to be positive and not getting wrapped up in all that Ayden can't or won't ever do.That something today was Ayden's skills assessment. Black and white words spelling out where Ayden is in an age equivalent format. It was probably just timing as today is not the happiest of days with the passing of a loved one, but my mission now is to think about success...

What Ayden CAN do:
He can WALK - This has been a topic lately as we just ordered what will hopefully be his last wheelchair for the days he gets tired or the distance is too great.
He can SLEEP - Most nights... Sure last night he partied at 3:30 AM, but as I read posts and blogs of fellow moms I remind myself we are not in a vicious cycle anymore and most nights he is fine. We are working now on a safety bed so when he does wake up to party, slamming his bedroom door shut until we come and hang out won't be an option.
He is SEIZURE FREE - We are over the year mark by a month or so and I know being able to listen and learn without "static" has to be making a difference for him.
He is TALKING - He has even started retelling parts of his day instead of his canned answers.
He LOVES SCHOOL! - This one is huge. For so long school was just a game to Ayden and now he truly wakes up ready to go. He saw me in the hall the first day and both myself and his teacher exchanged the look of "uh oh!"...He simply said "Mmuah! Hi Mommy!" and walked on with his friends. We have even been able to send him to after-school child care twice without much of an issue.

I know Ayden will still get tired before his peers, he will be more sensitive than his peers,and he will try to outsmart everyone around him, but he is moving in the right direction. For so long it seemed like we hit a brick wall every time he started forward. He is delayed, he will struggle, but he wants to try and he is willing to work. He has the one thing he has needed for years...

Momentum

On the medical side of things we have a few minor items in the future, Botox soon, new AFOs, and a new brace for lefty. Such simple little things now...

It seems like we may be out of the "first few years are rough" phase we were told about after his stroke and his surgery. So to the idea of moving forward and making more progress we say "Let's Go!"

An Anniversary of Sorts

Ayden was born a healthy little boy, BIG, but healthy. At that time our only worry was his extra toe, he was such a good baby. Nessa was still just a toddler and needed lots of attention as always. Ayden seemed to be happy just rocking in his little seat or sitting in his swing never complaining much as long as he could hear a familiar voice.
In June of 2008 shortly after Nessa's 2nd birthday, Ayden started getting fussy and was fussy off and on all day I took him to the ER and was sent home about an hour later. An ear infection was the verdict, if only I knew then what an absence seizure looked like then. I could have told him that he had already had a few that evening, maybe they would have done more...Hindsight is 20/20 I guess. To this day, we don't know when the stroke happened or when the encephalitis started, but on the morning of June 13th, 2 days after our ER visit, our Ayden was lost in a fog.
I remember in the hospital as we were told to call all of our family, I asked God to have my son a little longer because I just wasn't ready to give him up. Perhaps it was selfish at the time for me to ask, but I am so glad we have been these years with him. He is sometimes hard to handle, frustrating, and requires us to make sacrifices. Some may wonder why we have fought so hard for him and to those that ask, all we need to ask you is, "Have you met our Bubba?"
 Anyone who knows our little boy knows he is a miracle and can make even the most frustrating moments laughable. He keeps us on our toes, and reminds us what love is everyday. Recently, he has had a spell of some rough days, a few years ago it would have worried me, but now I figure growth spurt so we waited it out a bit. Since then we have heard new phrases and words another sign of a little growth. The best one: I gave him a hug the other morning and he says "Love you Sugar!" I say it all the time to him, but hearing it from him made me smile.
Why remember this day? It is easy to get frustrated by the loss of all the things we/he should be doing by now or the things he will never do. The only way we can appreciate where we are now is to keep reminding ourselves how far he has come or what may have never happened at all.

This was not the chosen path but despite brain surgeries, transports to Cleveland, and hundreds of seizures, we still have our Bubba. Today we are not celebrating the stroke, but taking time to look back at Ayden's incredible journey and success by the grace of God.

Prognosis

Yep, that is a REAL smile and a twinkle in his eye too! They say a picture is worth a thousand words and this is the picture. It has been several months since our last blog and I really do not know where to begin. So many amazing things are happening...
 First things first, seizure control, Ayden has not had any seizure activity since the shunt revision in last June (after his redo last May). We have again, under the care of Dr. Khan, taken him off of his 2nd seizure medication (he is currently only taking one). He is so happy now and is not foggy, cloudy, cranky, or agitated without a reason. He is like a "normal" five year old boy who thinks burps and farts are hilarious! Picking on his sister is still a favorite, but he misses her when she is not around too. He is absolutely in love with dogs, cats, and horses too. A puppy will be arriving soon, we just have to find the right one. I am quite sure the puppy will be worn out before Bubba will be, but we'll see.
 School is fun for Ayden now, he has friends and has started to speak up and make decisions for himself. PT and OT are going well and a consultant has been added for his vision. He usually rides the bus in the morning and afternoon, but if  he comes to school with me he can behave for a bit too. When school started this year I had to learn to duck around corners or behind doors so Ayden would not see me. He is so happy at school now that I can see him in the hall and say hello without incident. I am so proud of him and I am so glad that he has been healthy enough to ween off the meds that created "the monster". It will take time to lose his reputation for those that have seen him at his worst, but his best is better than ever. Don't get me wrong he is still strong willed and 5 years old...but he wants to succeed. Ayden has craved independence for so long and he is driving his own success now. This past Sunday we tried to take Ayden back to church and he really did ok with the preschool.This was a goal we have had for awhile, and I was excited that sis and I didn't have to go alone. It is amazing how many things we can do now as a family, now it is just a matter of being brave enough to try more. Why is the title of this prognosis, perhaps its the word that makes me the saddest at times. We have had people ask the question so many times,"But what is his prognosis?". The truth is Ayden, like so many others, is unique. We could guess, or speculate, but does it matter? We have a happy kid that loves us and finds joy in simple things...We love him and that is all we need to know right now. The lord has blessed us in so many ways. He has shown us the power of prayer and that miracles come in all sizes, ours is just under 4 feet tall and about 75lbs...His name is Bubba.