Hi everyone--welcome to this new discussion forum. Hopefully we can all visit and post often. It is nice to be able to share news about our 11q kids and keep...
I was talking with the boys feeding therapist yesterday and she asked me if any of the other 11q kids had feeding issues related to chewing. My boys used to...
Hi Linzee- My daughter had a terrible time learning to eat as an infant. I had to thicken all baby food and hold her lips closed for her to swallow....
Kyauburn1@...
Aug 18, 2006 12:57 am
4
Hey Linzee... Cody has a G-tube, but when it comes to even getting near food he runs. I would like to hear from you how your thearpist was able to get your...
Both of my boys are in feeding therapy that seems to be helping. It is very gradual and slow process that involves a progression from letting the food be in...
Morgan saw a feeding therapist about a year and a half ago for the first time (she will be 12 in November). We went for diet suggestions to try to get off...
Gretchenwarren@...
Aug 18, 2006 6:15 pm
7
Linzee, I do also believe it has a lot to do with sensory. Morgan loves her corn chips and cheerios and crackers -- crunchy. While her favorite is peanut ...
Gretchenwarren@...
Aug 18, 2006 6:16 pm
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how many of the 11q kids have so low of tone they cant sit stand crawl or even swalow with out asperating. and can they get ovet the problems causing the low...
Regarding low tone--- My child is 14 now and was always low toned. She didn't roll over until 10 months old and walked at 25 months. She was started in...
Kyauburn1@...
Aug 20, 2006 9:55 pm
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I agree. Cody could not sit until he was over a year old and did not walk until he was almost 5. I remember the 1st 11q conference I went to in Ca. and another...
Both of my boys are 11q- and both had very low tone when they were younger. The didn't sit up until they were about a year old and didn't crawl until about 2...
WE have not had that problem - more an issue of not wanting crunchy foods or certain textures like fruit - CArolyn had a weak suck as a baby and always had...
Syretz Family
syretz@...
Aug 23, 2006 8:15 am
13
Hi Everyone, I am wondering if any other family has been approved for the platelet research in Maryland? Cody has been approved we are just waiting to hear...
Laura- I'm glad Cody has been accepted into the research. I'd have liked for our daughter to be in the research but she just had a transplant during the...
Kyauburn1@...
Aug 28, 2006 8:50 pm
15
Hello all- Does anyone else have a continuous problem of their child being constantly fatigued? Even if my daughter has 8-9 hours of sleep, she still will...
Kyauburn1@...
Aug 30, 2006 2:02 pm
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Laura, We considered applying for the study, but things have been so hectic around here (we just finalized the adoption of our baby girl) that I didn't apply....
Linzee, Congrats on the new baby!! I am still waiting to hear back from Dr. Gahl as to what tests they will be running. The last email I received on August 9th...
Sarah, I some times wish Cody was fatigued! Cody is always wired but when it comes to bed time and I turn his light off he goes to sleep fairly quickly. You...
Laura- Thanks for the idea but it isn't iron. Courtney has a thorough blood work up about every 2 weeks since having the heart transplant. Her iron is in...
Kyauburn1@...
Aug 31, 2006 2:23 pm
20
Sarah, Brayden if full of energy most of the day, but he falls asleep almost everyday coming home on the bus. Zach is almost 5 and sleeps about 10- 12 hours a...
HI Linzee- During the convention, was anything discussed about sleeping patterns? I remember everyone received a sleep questionnaire to fill out and return....
Kyauburn1@...
Aug 31, 2006 4:46 pm
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In a message dated 8/30/2006 9:17:31 AM Central Daylight Time, linzee_carroll@... writes: (we just finalized the adoption of our baby girl) ...
Mary's idea is a great one. Anyone who would like to post and introduce yourself and your 11q child/children, it would be helpful as we communicate about the...
If I remember right the sleep problems seemed to be varied, but related more to not sleeping enough. The talk is being transcribed and will be available...
To add more to Mary's great idea, wwe could all put our info into the data base. Linzee, I run 4 yahoo boards so setting up a data base is very easy if you...
Whew, school finally started.... I am new to the yahoo group, but many of you already know me from conferences, and I'm proud to be the Secretary/Editor for...
Hello Lori- Glad you've joined the group.;-) I have a 14 yr old daughter, Courtney, who has Jacobsen. She just had a heart transplant in Dec. 05 and is...
Kyauburn1@...
Sep 2, 2006 4:50 pm
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11q families -- My name is Gretchen Warren (VP, 11Q Research) Morgan, who will be 12 in November, also went through and sometimes still does pinch. We try to...
Gretchenwarren@...
Sep 3, 2006 5:30 pm
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Hi list members, My name is Mary Stoner and I am the proud grandmother of 9 grandchildren. My husband and I live in Galesville, Wisconsin-------kind of between...
Hi Rich and I found out one year ago our daughter CArolyn has Jacobsens Syndrome. CArolyn will be 14 at the end if this month. she is currently starting 8th...
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