[tri-med] Re: loud and messy/Kelly & Mohammed

Hi Mohammed & Kelly,

I understand that the botox injections have to be repeated at regular 
intervals, can you tell me how often?

Tess has calluses on her fingers from chewing on them.

We have been double bib'ing Tess since the beginning, the underneath 
one is clear plastic to protect her clothes. I like Debbie's idea of 
the quilted one with the plastic backing, but as the top towelling 
one gets soaked, it still has to be changed frequently, as otherwise 
it can cause chafing under the chin.

Now that Tess is a "big girl", we also say "fingers out", and pull 
them away. She will sometimes respond and take them out, but 
sometimes, just grins and chews deeper. (sigh).

Tess is also noisy at times, especially when bored, and sometimes can 
be embarrassing. We were at a function at the Uni the other week. A 
chap came up to talk to Ian and I, and went on for quite a few 
minutes. Tess sat there for a while, then gave a resounding 
raspberry. We all laughed and Ian said to the man, "don't take it 
personally mate".

She also makes at sort of qwuurk sound and I say to her, stop you'll 
get a sore throat.

She doesn't do this when we play music, so I put it down to boredom.

At 12:13 PM 28/05/2009, you wrote:

>We have an appointment with Nejoud's doctor to do what is called 
>bottox injections in the saliva glans. Many people that tried it say 
>this procedure reduces drooling to 90% in some cases. We look 
>forward to see the results. Nejoud is a real drooler. We change bibs 
>12 times a day if not more. As for the noise Nejoud has the same 
>noise making where she sounds like she is trying to talk but bables 
>a lot with her tong sticking out somewhat. We actually like it and 
>she seems to enjoy it a lot. It happens when she is feeling really 
>good. Biting her fingers and putting her hands in her mouth is a 
>normal routine for her also. Last time she did bite her finger and 
>cut it. We start putting socks on it but she even bit her finger 
>throughthe socks. She is doing better lately. By the way if you feed 
>Akaiya formula which I assume that is what she eats then 98% of it 
>is water.. Nejoud takes only Neocate Jr by G-tube..Good Luck...
>
>Mohammed, Nejoud's father, T-18 and 3-yrs old.
>
>kelly - mom to akaiya t18 - 6yrs
>http://akaiyajacelyn.blogspot.com
>
>
>                   Building ___ooOOoo__ Rainbows
>                       www.trisomyonline.org
>                   Families Helping Families On-line
>
>
>
>________________________________
>
>From: "dncingqwn@xxxxxxx" dncingqwn@xxxxxxx
>To: tri-med@xxxxxxxxxxxxx
>Sent: Wednesday, May 27, 2009 8:12:38 PM
>Subject: [tri-med] loud and messy
>
>                   Building ___ooOOoo__ Rainbows
>                        www.trisomyonline.org
>                   Families Helping Families On-line
>
>
>
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Jocelyn, wife to Frank, Mother to Ian, Gillian and Susan, Nanna to 
Carly 21 Mathew 20, Ashleigh 19, Alex 17, and Tess (Trisomy 18,) age 
12 yrs, & Benny the Maltese, plus one amazing DIL and two amusing 
SIL's of whom I'm very fond, and their extended family who are too 
many to list here.  

                  Building ___ooOOoo__ Rainbows
                       www.trisomyonline.org
                  Families Helping Families On-line

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