[ Post a Response | 22q Deletion Interest Board ]
Posted by debby
on 2/26/2008, 3:55 pm, in reply to "Re: 22q11 member from UK - Thought I'd share my Story."
203.113.232.12
Hi to all three of you. I just wanted to comment on the last post. I feel the same way. My granddaughter Arwen was just born in Australia on January 18. Within the first few days it was realized that she probably had 22q11 and she was tested and it was confirmed. She struggles with some major heart issues which also affect her lungs and her soft cleft palate makes feeding difficult. She has trouble keeping food down so she is still very tiny. But she has the sweetest spirit. Her ears are a bit different and lower down than many people's and we noticed that right away. But I still think she is the cutest, most adorable person I've ever met. Her range of speech sounds are limited because of her cleft, but she lets us know how she is feeling with her body language, facial expression, and the talking little sounds she makes. I love her very much and am glad she is in the world. We are still tube feeding her with her mother's breast milk and supplementing it with calories and thickener. She also drinks some from a special bottle for cleft palate. She loves that very much but it is quite tiring because of her cleft, heart, and lungs. We hope the thickener will help keep the food down.
--Previous Message--
:
: Hi to both of you i have a daughter
: who was born and diagnoised at 3
: months with 22q11. She was born with
: heart defects and facial deformities
: like low slung ears, bulbous nose
: almond shape eyes etc. We have
: development delays, hearing
: problems, eye problems, speech and
: language and low immunity. My
: daughter may have all these problems
: but to me she is the cutest,
: socialble little girl i have ever
: meet and i would bet that you lisa
: and your son , nancy as just as
: special loveable and gorgeous as all
: the other children and adults out
: there taht have been diagnosed with
: chromosome deletion 22q11. Goodluck
: to you both i am sure that you are
: both extrodinary people.
: --Previous Message--
:
:
: --Previous Message--
: Hi, Thought I'd share my story. I
: found out that I had 22q11 when I
: was 19 and had a test done. I was
: born with a congential Heart
: Condition called Tretalogy of
: Fallot, which is not suitable for
: surgery for the life risk to high.
: I've also got Scholiosis now
: corrected. I have a Cleft Palate and
: a double Uvula. I was due to have
: corrected surgery on that but have
: got a large vein at the back of the
: throat made difficult for surgery. I
: was fitted with a brace to improve
: my speech but found it
: uncomfortable. Speech not to bad
: unless I have a cold. I have found
: it difficult to swolle things as a
: baby. I have clubbed fingers and
: neckI was having speech therapy at
: school and passed my exams and now
: in employment. I find remembering
: things hard to do and have to write
: things down and sorting out things
: on the phone and filling in forms a
: struggle my parents and carers help
: out. I'd like to hear from some one
: soon.
:
: Hi Lisa, I am a mother who has a son
: that is 7 years old with 22q11.2
: Deletion. He was born with
: Tetralogy of Fallot with an absent
: pulmonary valve. He has had 5 open
: heart operations. He has had
: intensive speech therapy and can
: talk, but to some he is
: unintelligible. He has other
: symptoms too: mild hearing loss,
: loss of the mandibular nerve on the
: left side of his mouth, a small
: throat, and small broncials. He has
: trouble with his lungs because of
: this and currently has something
: called pulmonary hypertension, which
: means that he has high blood
: pressure in his lungs. He alos has
: digestive problems, scoliosis, and
: we are just learning that he has
: learning problems. He has a
: learning problem called Non-Verbal
: Learning Disorder, which means that
: he has trouble writing, trouble
: visualling in his mind, trouble
: appying one situation to another. I
: hope this helps you. If there is
: anything else I can help you with
: let me know. Nancy from Indiana,
: USA
:
:
:
:
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