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About Me
- AydenAva
- I am 4 years old & I came into the world early .I was taken to a different hospital because I couldnt breathe.At this hospital I was diagnosed with severe Spondyloepipseal dysplasia congenita,Dwarfism.I needed a tube to eat & breathe.I have gone through 15 surgeries & kicked butt everytime.Mommy says I'm the toughest kid she knows.I was really sick for 3 years so my Mommy & Daddy took me to Cincinnati Childrens Hospital & they made me all better.In May 2008 Dr. Cotton in cincinnati took my rib cartalidge out & put it into my trachea & took my trachy out,now I can breathe all by myself!!!Since getting my trachy out,I went to the beach for my first time ever!!,I had so much fun building venom sand castles.& I got to go camping & fishing & touch a real frog!!!I have another big surgery to go,a third of my stomach is in my chest cavity & sometimes gives me a tummy ache,but mommy & daddy tell me how brave I am,so I know I can overcome anything,just like a real superhero!!.......................SED congenita,tracheomalacia,nissen & G-T,Trach,paraesophegeal hirnea,C-spine instabilities.RESOLVED laringeal,bronco malacia,pierre robin sequence,cleft palate,retching
10 comments:
Did I not say today was going to be a great day! That's it I am quitting my job and becoming a psyhic!
This is awesome - I wish I was in Buffalo now so I can see you when you got home.
Love you all very much!
that is such great news. when tracy called and told me i said to myself good can't wait to see you all when you get home. and then..............i remembered i was in fl. and i'd have to wait till august. so keep sending the pics and notes ok. i love you all hugs and kisses to everyone.
teri
WHEN A HERO COMES ALONG....
Some say a hero is a policeman, fireman or a solider, but I know now I have "heroes" right here in my own family.
My Daughter-In-Law, Angie, to see how strong she is outside and in. How knowledgeable she is on those medical terms she says without a blink of an eye when anyone asks about Ayden. Sometimes I think she's one step ahead of all those many doctors he has. I know sometimes the tears have been sad ones, and she has gotten through them only to make her stronger, and the BEST MOMMY around. How very proud I am to have her as my Daughter-In Law.
My Son Jeremy, when he was a small boy, I was the one that held his hand to get him through all his bumps and bruises. Now I stand at his side, with my hand on his shoulder, because now he holds his son's hand to comfort him, protect him, wishing he could take away all his pain. He has grown to be a strong man. How very proud I am to have him as a son.
But my BIGGGEST hero is my grandson Ayden. How blessed and privledged I am to be apart of these weeks here in Cincinnati, with them, when he had his trach removed. Knowing how little meds he had after surgery was really amazing. As I sat next to his bed (while he was sleeping)8 days after surgery without any tubes or bandages on his face, how beautiful he is.
What an Angel from heaven. He is the one who got us through these weeks. How very proud I am to have him as my grandson.
I know that his road will still have many bumps, but in my heart I know that my 3 heroes will get through them with flying colors.
Thank You to everyone that has had my family in your thoughts and prayers. Your love and support will always have a special place in my heart.
I do have one more hero....
Papa, he is the glue that holds this family together.
To the Lord above....
THANK YOU,
Gramma
WOW - That's Great!!!!!! We'll call you guys next week after you return to Buffalo.
Love, Bobby,Lynda & Tori
Hi everyone,
What great news, Ayden going HOME sooner than anyone expected. Ayden you just continue to surprise all of us. Hope you have a wonderful time over the weekend. Have a great time at the zoo.
Love,
Diane & Bob
Hi Angie and Jay,
Awesome to hear about home on the holiday weekend.That brought tears and chills to me , then I read Gramma's tribute and I lost it!It is a wonder my keyboard still works.That tribute was so beautiful.Yeah PMS is setting in but that was lots of love conveyed,that would bring most to tears. Everyone have a nice weekend and good luck on what monday will bring!take care-----------cindy
Hi Angie and Jay,
I got to spend time with your daughter today.She got whisked out of the car seat by me and held and played withfor nearly 2 hours. I shared her a little bit.It gave Gramma a break.I got to feed her pears and chicken combo. ewwwwwww! She blew a couple of rasberries and food went all over.Oh,if your daughter starts making weird noises,I taught her something new.See if she remembers.
I have never seen a baby smile as much as your daughter.She is absolutely adorable!!!!Had a goodtime.It is a proven fact that when a woman holds a baby,Oxytocin is released into the bloodstream.It doesn't have to be your own baby!That is the feel-good stress relieving hormone.
Give Ayden a hug for me and tell him cindy said,"awesome boy power"!
Take care all!--cindy
angie ayden looks so wonderful!! how wondrful that he did so well!!! can't wait till u guys come home!!!!! it is so amazing i'm glad he did so well!! laura
Hi Angie and Jay,
I got to spend part of yesterday with Ava too.She saw me and put her arms up for me to pick her up. That beautiful smile is hard to resist.I got your brother to hold her!Do you believe it?
He even went for a walk and was fighting Matthew to push the stroller.Grandma fed her this time and she got the raspberries. Oh my gosh it is so funny when she does it she laughs.
WELCOME HOME!!!!!!!!!!!!!!!!!!!!!!!!!!!! Cindy
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