Re: Overdue introduction

[Guest guest]

,

Your children are beautiful!

Amy

On Dec 9, 2008, at 1:36 AM, wrote:

> LOL - well, me and my husband.

>

>

>

> On Mon, Dec 8, 2008 at 10:23 PM, Jodi & Juni

> <junikins4me@...>wrote:

>

> > Hi !

> > Welcome back! Sorry to hear of your loss....We are glad your back!

> I *do*

> > remember you, but didnt realise u unsubbed from the list...

> >

> > Question:

> > That's a ton of kids are you the sole care provider?

> > phew!

> >

> > Jodi & Juni

> > Digital Scrapbook Artist & Service Dog

> > All Scraps 4 You

> > www.freewebs.com/allscraps4you

> >

> >

> >

> > From: <monicathemighty@... <monicathemighty

> %40gmail.com>>

> > Subject: Overdue Introduction

> > " " < <

> %40>

> > >

> > Date: Monday, December 8, 2008, 9:46 PM

> >

> >

> > Since I just replied to a post, it's probably time for me to

> introduce

> > myself as well.

> >

> > My name is English. I live in Utah and was originally a

> member of

> > this group a looooong time ago. Probably 6 or so years ago. At

> that point

> > I had three children, the youngest of whom had SMA type 1. My Taleah

> > passed away two days before she turned four and I unsubbed from

> the list.

> >

> > Since then I gave birth to two beautiful boys who have an

> extremely rare

> > asymptomatic form of SMA, adopted two children from Zambia and

> then gave

> > birth to my youngest who has SMA type 1. So if you're counting

> that is 8

> > total children, 7 living with me.

> >

> > Tabitha was very weak early on, symptomatic by day 4, g-tube for

> swallowing

> > difficulties at 5 weeks old. She is in one of the research trials

> and is on

> > a couple different medications to decrease progression and

> weakness. She's

> > done amazingly well since then. Rather than just prevent loss of

> strength,

> > she has actually regained some of her swallow, arm strength, and

> vocal

> > volume. In the scans they've done she has increased lean muscle

> mass and

> > nerve function.

> >

> > She's a wonderful, beautiful, vibrant 14 month old little girl.

> >

> > You can check out my blog if you want far more info. about our

> little

> > family

> > than you ever asked for:

> >

> > www.monicathemighty .blogspot. com

> >

> > Tabs just had a hospital stay for bleeding in her stomach, that

> resolved,

> > but left us with many unanswered questions.

> >

> > Glad to be here, I love it here. Even if I don't feel like I have

> a ton to

> > contribute, I read and am reassured of the kind of child/

> adolescent/ adult

> > Tabitha might grow up to be.

> >

> >

> >

> >