rosieari9197
Earning My Ears
- Joined
- Apr 4, 2011
Ari was born with trisomy 9 mosaic,a rare chromosomal disorder. his diagnosis was a shock and took nearly a year of testing,medical scares and many therapists and doctors to diagnose. children with this disorder do not thrive,and most often result in death before the first birthday. From the moment Ari was born he struggled and worked every day, every min, and every sec. he couldn't coordinate his suck and swallowand he had severe medical issues related to this. threw aris determination and perseverance he began to thrive. surpassing all the doctors expectations (when i first saw Ari one neurologist said- he was a lump of clay- the nerve of that one! Boy did heprove him wrong!) every time something threatened to take our Ari away- someone above watched and fought for Ari. by the time Ari was three he had been threw early intervention and just a few weeks before his third birthday ari started walking-making him one of the only children with his disorder walking with out the use of a walker before the age of three (thanx to surgery on his spine ari has spina bifida occulta and it can cause the spinal cord to snag on one of the openings on his spine aka a tetheredcord ) his third birthday was a celebration! and a celebration of life- for in 3 years Ari had been put threw the ringer- many hospital stays ,procedures,surgery's and allergic reactions(a simple eye test he was allergic to the cylco gel they use to dialate the pupils and his organs started to shut down he was in the hospital for about a week.. he graduated that day- at dougies (his fav. Resturaunt at the time) with all his family ,friends and therapists. then It was time for ari to go to school , this special needs school became our familyl. words cannot even express the amount of love and care and devotion that the staff showed to Ari-whom they all nicknamed little tzadik(righteous one) and Mr. America(due to his waving skills!) he thrived and pushed threw mountains and he conquered. his biggest test came when a simple bronchoscopy turned bad and he stopped breathing(larangical spasam)- even on a respirator Ari fought along with his zaidys and bubbys in heaven to survive- and threw g-ds kindness he pulled threw and went right back to school within a week! that's my Ari! . when Ari turned 5 we faced a huge decision. with all of our family in Florida-and the school system changing we made a bold step and moved to boca raton Florida. From new york. leaving behind his friends ,his therapist and his doctors (thank u Dr. rosen) .). but we moved forward -and that's how it went- Ari thrived and his health improved in sunny Florida. and best of all his quality of life improved by being next to his bubby and zaidy (aris sister rosie now had a place to hang out when we were at his dr. app.),his great bubby rochel and all his aunts ,uncles and cousins. support is the biggest thing a special needs family can get- and that's just what we got! as hard as it was-we knew the right decision was made and Ari was enrolled in public school- bec. there were no available schools that would be the best place for Ari that were Jewish. and we were proud of our ari, going to school everyday with his kippa and tzitzis.!!! many teachers came for shabbos and.....my heart was filled because my little tzadik was flourishing. with in the year ari was sitting at a desk and making an x with a green crayon. but best of all he began to expand his sign language(Ari cannot speak and has a hearing loss in both ears he usually wears his blue and green hearing aides) he began communicating in ways that i only dreamed of. and we were happy, we were moving forward and we were proud of all the hard work Ari was doing.
Ari is now 8 and he continues to work so hard every second of every day to achieve what most kids take for granted. His sister rosie is a gem. She truly is a trooper! She didnt know what hit her when ari was born! But now she is like a mini therapist! Although there are a lot of times when it is very hard for her . like when ari has his dr apps. Or when ari acts out( he has been diagnosed now with add//adhd )yup along with his extra chromosome why not add to his reseme!!lol . today ari goes to a great school in
delray beach that has a aac class that is augmentative communication devices are used by all the kids in his class. Although ari loves his dynavox. He communicats so nicely with his sign language. He can sign maybe 150 200 words!!!! And the school has given him his own sign interpreter(I wish she could go everywere with ari! Just so she can help others who dont know sign to understand ari.
Because of a lot no known on trisomy 9 mosaic ari is closly watched my geneticist, neurologist, cardiologist, gastro, developmental pediatrician, neurosurgeon, orthopedics, ent, and his audiologist. Some appts. Come once a year , some dr like to see us more often- its a life long thing here! And that is why aris genetist signed ari up for make a wish foundation.
Within a day they had called us to say ari was eligible to recive a wish and then the granters would contact us with in a week.
It is now april and its been a whirlwind of excitement! We met everyone on aris wish team and got right to work in playing his sign game to see what his wish would be.
Ari wished to go to Disney world with his family and to orlando to meet blues clues his all time fav.!!! And he wants to color with him- and look for blues clues! And so fran his wish granter waved her wand-made the phone calls and the wish was granted! Our trip date is may 9th and we are counting down the days. We are excited and starting to plan the send off party(any ideas are welcomed) . we will be staying with give kids the world and from what I have heard we are just speechless at the kindness that the show to the kids there.
We are working hard to make sure that rosie is not left out- in a way- she deals with so much more then ari, because she understands so much more! Hopefully everything will be magical.
So there is our story- a shortend version at least(could u imagin the long one!!!!
Ari is now 8 and he continues to work so hard every second of every day to achieve what most kids take for granted. His sister rosie is a gem. She truly is a trooper! She didnt know what hit her when ari was born! But now she is like a mini therapist! Although there are a lot of times when it is very hard for her . like when ari has his dr apps. Or when ari acts out( he has been diagnosed now with add//adhd )yup along with his extra chromosome why not add to his reseme!!lol . today ari goes to a great school in
delray beach that has a aac class that is augmentative communication devices are used by all the kids in his class. Although ari loves his dynavox. He communicats so nicely with his sign language. He can sign maybe 150 200 words!!!! And the school has given him his own sign interpreter(I wish she could go everywere with ari! Just so she can help others who dont know sign to understand ari.
Because of a lot no known on trisomy 9 mosaic ari is closly watched my geneticist, neurologist, cardiologist, gastro, developmental pediatrician, neurosurgeon, orthopedics, ent, and his audiologist. Some appts. Come once a year , some dr like to see us more often- its a life long thing here! And that is why aris genetist signed ari up for make a wish foundation.
Within a day they had called us to say ari was eligible to recive a wish and then the granters would contact us with in a week.
It is now april and its been a whirlwind of excitement! We met everyone on aris wish team and got right to work in playing his sign game to see what his wish would be.
Ari wished to go to Disney world with his family and to orlando to meet blues clues his all time fav.!!! And he wants to color with him- and look for blues clues! And so fran his wish granter waved her wand-made the phone calls and the wish was granted! Our trip date is may 9th and we are counting down the days. We are excited and starting to plan the send off party(any ideas are welcomed) . we will be staying with give kids the world and from what I have heard we are just speechless at the kindness that the show to the kids there.
We are working hard to make sure that rosie is not left out- in a way- she deals with so much more then ari, because she understands so much more! Hopefully everything will be magical.
So there is our story- a shortend version at least(could u imagin the long one!!!!
