[ Post a Response | 22q Deletion Interest Board ]
Posted by Donna From Canada --Previous Message--
on 11/10/2006, 4:40 pm, in reply to "Re: experiences wanted"
69.159.62.11
Wow thats wonderful............I worry each day with my Ashley, she was born tetrology of fallot absent pulmunary valve has had three repairs, she is mentally delayed and has scoliosis.........she is so sweet, she is now 9. I was told she would not make it past 6 months if she survived heart surgery. So its wonderful to hear your daughter doing all these things. We're having a hard time with her reading and writing. I was just by her occupatinal theropist she might have to drop her cause she has had no progress this year, meaning it is due to her syndrom, I didn't know what to do, so thats how I found this web sight, any suggestions on how to help my child when it comes to letters and reading.
Thank you
: Sue, that is one of the most
: inspiring stories I have heard. I
: have a 5 year old with 22QDeletion
: and she is doing just so awesome
: having started Kindergarten this
: fall. She is slightly delayed and
: we know things will most likely stay
: that way but to hear that your
: daughter struggled but has found a
: way to graduate and do the
: "normal" teenage things of
: life is wonderful to hear. Our Sam
: is a little sickly girl too and we
: dread every fall and bank on at
: least one hospital stay each year.
: Sounds like that will be the way of
: life. If your daughter still
: struggles with regular viruses,Colds
: are probably something to fear with
: this disorder.
:
: I want to thank you for your
: encouraging story and keep posting
: for all of us mom's with kids
: growing up behind your daughter.
: you have a wonderful inspiring
: story!
:
:
: http://www.caringbridge.org/visit/samvcfsstory
:
: --Previous Message--
: Our daughter is now 19 years. She
: just graduated from high school
: although the last few years of
: school were extremely difficult for
: her. She has a driver's license and
: a part-time job in a local fast food
: restaurant. She is a wonderful girl
: with a heart of gold. She has met
: many challenges in her life, both
: personal and health issues. She is
: a trouper. She suffers with a low
: immune system, a cleft soft palate
: (which was corrected with surgery,
: too many ear infections to count
: (she just recently had another
: surgery - also too many of these to
: count - to repair her eardrums from
: damage due to infections, we are
: hoping this will be successful since
: she suffered with significant
: hearing loss. We are currently
: going through what most parents go
: through with teenagers. I can't
: think of a person who has met our
: daughter that didnt think she was
: terrific. Most people are surprised
: to hear of her condition (although
: she does have some of the facial
: anomalies - almond shaped eyes,
: unusual ear shape, etc.) She has
: been an absolute joy in our lives.
: She has an older brother who is now
: married and in college. Sometimes I
: think it was difficult for her as
: she began to realize that she was
: different from her brother. She is
: extremely fragile physically and
: seems to catches cold easily and it
: takes her an inordinate amount of
: time to recover. She needs extra
: rest and, of course, there have been
: many an argument about when she
: needs to slow down. She definitely
: does not have the stamina of other
: teens her age. She struggled in
: school and has a low average IQ and
: graduated with an adjusted diploma.
: It took her several tries to pass
: the written portion of driver's test
: but she passed the actual driving
: portion first try! She was
: absolutely thrilled. So far she has
: been a careful driver and enjoys
: that extra freedom. This may be
: more info than you needed; however,
: I know it certainly helped me to
: communicate with other parents and
: know that you are not alone. These
: children are special and some days a
: great challenge but our daughter is
: a loving, kind and caring woman.
: She has all the hopes and dreams of
: any teenager, wants to be on her
: own, wants to take responsibility
: for her life and I know she will do
: be able to achieve those things. If
: you have any questions, please post.
:
: --Previous Message--
:
: --Previous Message--
:
: --Previous Message--
: My third child was diagonosed with
: 22q11 deletion (DiGeorges). I knew
: she may have had a genetic disorder
: prior to birth since she had several
: heart defects.
:
: I have a 4 year old daughter and 2
: 1/2 year old son as well (neither
: have the disorder), and wondering if
: anyone else out there had troubles
: with pumping breast milk and dealing
: with insurance companies supplying
: materials for an NG tube (which she
: came home with from Johns Hopkins).
:
: We are awaiting for her next surgery
: but just wondering if anyone else
: has had older kids with a younger
: siblings.
:
: We have a 14 yr old son, a 11 yr old
: daughter, both typical. Our third
: child (a son) was born with 22q11,
: he's now 8. Would love to talk with
: someone in a similar position. Feel
: free to email me
:
: Aloha....We just found out after 15
: years that our oldest child (15) has
: VCFS. We also have 4 other children
: that was not affected. I would love
: to have someone who is dealing with
: this email me. Maybe I could be of
: some help also since my daughter is
: 15.
:
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