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Thanks Joan
From: joan romig
Sent: Thursday, November 06, 2008 1:06 AM
Subject: Re: [11q_disorders] Jacobsen's Syndrome Website
Hi Erin,
Sorry its taken so long to get to you about our story.
Nick was born May 21st 1996 and was hospitalized for 20 in the NICU. It was there he was determined to have thromboytopenia and a vsd. Other complications that caused himto stay in hte hospital was the inability to feed.
After numerous chromosome studies he was finally diagnosed with 11q when he was 6 years old.
Other difficulties nick has is cp, mr, developemental delays, immune defficiency, scoliosis, hearing and visual impairments, reflux, vsd, pulmonary hypertension adhd, pdd (pervasive development disorder) a mild platelet function disorder and behavior problems.
He has had numerous surgeries including a plate repaireal, double hernia repairal, cleft palate repair, tunes in the ears, cardiac cath, bone marrow aspiration and biopsy, undescended restes removal and a double eye turn repair.
He started physical therapy when he was 10 weeks old and shortly after started receiving occupational, speech, feeding and vision therapies weekly.
To this day he is followed by numerous health specialists including but not limited to:
Cardiolist
hematolist
immunol
opthamolist
pediatric developmental specialist
gastroenterologist
ent
pulomonologist
genetics
rheumatologist
plastic surgery
allergist
he receives behavior services at home 5 nights a week with tss (therapeutic support staff) behavior specialist and a mobile therapist.
He attends main stream school in a life skills program and has a one on one aide to help him with his daily activities and is learning to dress himself, groom himself and feed himself along with focusing on his educational goals.
As for extra ciricular activities, he plays baseball with a special needs sportsleague and is involved with the local dream come true and various car clubs. He loves to go to the park to play and in the summer loves swimming.
He ahs come a long way and is merging into being potty trained and can now drink from a sippy sup, he is also starting to feed himself some foods and can help gethimself dressed. His biggest accomplishment to date though i believe is his speech and is making tremendous strides.
I hope this is what you were looking for. Let me know if you need anything else. feel free to change this up anyway you'd like. I'm not good at writing these things.
Take care
Joan
On Wed, Nov 5, 2008 at 9:28 PM, Erin <erinkewer@live.com > wrote:
I am still looking for stories for the website. If you have not seen it
yet you can go to www.jacobsenssyndromeawareness. Please email mecom
your stories and also any pictures that you want me to put on the site.
Please give me your feedback, Im looking for ideas for the site if you
have any please let me know. Erin
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