Enjoy a great get away at DMC with the all inclusive three hour EEG day camp and spa package..
Sit back and relax while your registered therapist plays with your hair and relaxes you with a scalp scrub. A complimentary hair style complete with head wrap will make you feel right at home.... And it's all the rage... Free face painting too!
Enjoy snacks right from the comfort of your own adjustable cot while you enjoy the entertainment of the wonderful selection of movies provided by the EEG staff at DMC.
Top notch titles such as Elmo, Happy Feet, Scooby Do, G Force, Frosty the Snowman,and many more..
This is your time to recharge.
You can do the wave!
Moms who chaperone will enjoy the relaxation too!
When your day ends you will receive a second scalp scrub and leave knowing you have been well cared for, styl'n with your new fashionable hair, entertained, and go home knowing your therapist has tended to your every need in giving you a good healthy work up.
Long post, a few pictures and even a couple videos to boot..
Cullys first Valentines gift from his Olivia
So how much time has passed since the last update?
We have reached some amazing marks, and a few set backs too. But all in all we are doing very well in "Cullys house".
It was not so long ago that my son was on the edge of leaving us and now he is strong, setting the grading curve and entertaining all of us around him in these recent months. He is also teaching us and opening new doors to many of his friends. He has a gift and you will understand before the end of this update...
We have had more seizures again. Not the "Infantile Spasms" that we battled previously but Cully is developing another seizure disorder which we were well aware was very likely. The seizures have been sporadic though lately they are becoming more frequent. The latest seizure was at school this past week when the teacher found him rather motionless and out of it while standing still. He was wetting himself and was unaware of that or anything else around him. Later it was noted that he did not understand common words that were familiar to him previously, and he was tired. But this all passed in short time and back to Cully he was..
With the new onset of seizures our current wean of Cullys last medication is over and his team at DMC has drastically increased his medication. Cully will get to see the gang soon as we have been asked to return to Neurology this week for an EEG. Hopefully this onset of seizures will easily be put under control..
Regardless, we got this ! This we can handle !
Cully has continued to progress like lightning thanks to the ABA therapy he has been getting 5 days a week following his wonderful school program. He continues to be an integral part of other special needs children around him too. The therapists working with Cully have now incorporated him in the daily therapy sessions of other children who are primarily non-verbal and do not interact with others. With Cully these children come to him to interact, play and ask him for help with toys and such. He is changing the course of the lives of these children and why he has this gift I do not know but it fits the rest of the description of this remarkable little boy that we are so lucky to have in our family. He truly is a gift and we are so happy to share him with the others he knows as "his friends" !
Cully has been using complete words and he answers with a full "Yes" or "No thank you" and also uses his words to ask for things such as "Where is Ipad please?" or or perhaps "Peanut butter jelly please". Sounds like no big deal huh? Wrong! We are so happy. He also can very clearly state "I farted"... one of his favorites.
He reminds us EVERY TIME to say "Excuse me" when any of us may burp. Bless you has been the most recent with a sneeze. And what all this means is that he has become aware of much more surrounding him that we had expected some time ago and he is also managing his day to day interactions... He on his own has learned, or perhaps formed his own display for affection or manors towards another to retrieve and help put a coat onto his special friend Olivia. His friend Jesse welcomes Cully each day at the door with a very enthusiastic "Cully here". A verbally impaired autistic boy who has learned to use his words with his friend, my son. Jesse is one very cool kiddo that puts a smile on my face each time I see him.
Cully and his pal Jesse
The other day my son had his very first date. Olivia and Cully sat side by side at Red Robins while we all enjoyed their company for a night out on the town. Olivia and Cully have a very particular bond.... Olivia has a tendency to cry out from time to time as is the nature of her autism. We found Cully to simply pat her on the shoulder with each outcry and instruct her with a simple "Liv, shh! Hush"...And this seemed to work well. Oh, and Julie and I truly enjoyed the company of Livs Mum and Dad too.
Date night, Cully and Liv
Julie voiced her concerns the other day about when Cully may level off with his mental growth? At what age level will he be at in regards to his development? This had been on my mind for some time too but I had not been ready to discuss it until she mentioned it. Given a little thought I tend to think we could be at that level at any moment as I see huge steps forward but his character has been slow to change... But even so he has a natural need to be aware of what he needs for his survival skills. He has shown remorse when appropriate, concern for his own well being and general abilities for life's day to day requirements. Keep in mind that this is the little boy who while laying immobilized in a hospital bed decided that from that very moment forward to use the toilet. With near no accidents from that day on too ! All the things I was destined to install in him when we first learned that we may have a limited time to build such things. But little credit lies with Julie or I. Cully pulled it all off on his own.. And this amazing thing called ABA THERAPY and his school program helped show him the way and gave him the tools to progress.
Julie made a FaceBook post with a challenge. If 100 people read up on "Infantile Spasms" and let her know they had by liking her post then I would let Cully shave off my beard.. And she got 100 likes ! Here is the damage......
And my happy Cully moment came this past week when I received an email from Olivias Mum..
It reads..
"Today when I was leaving after dropping Liv off at school, this is what Cully did, and she stopped crying. Their so cute together!"
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