Re: My son has just recently been diagnosed with RSS - ...

[Guest guest]

Hi Maeve

Just to show you that there is light at the end of the tunnel.Christian was

born weighing 4 lbs 13oz at full term and grew very slowly[14lbs/64cms at a

year,19lbs /74 cms at 2 years]His appetite was very poor he seemed to be ill

about every three weeks[tosillitus,ear infections etc..and unfortunatly he

had about 25 febrile convulsions as a result of these]he was dx at 20 months

which we actually found a huge relief and he started Gh at 2 years old.He is

now 4.9 years old and started in his recption class[5 days 9-3:15]after

chistmas.He now weighs 35lbs and is 104cms tall and is not the smallest in

his class.He is now a happy healthy and robust child and is forever telling

me how hungry he is.Those first three years were long and hard and there may

be obstucles in the future but at the moment he's just great!!!!

Joanne[The other children have just reminded me that I never mention them so

here goes]mum to -8,Kyran-6,Christian-4,on-3,2 rabbits,1

hamster,and 2 stick insects. ---- Original Message -----

To: <RSS-Supportegroups>

Sent: Friday, January 19, 2001 8:06 PM

Subject: RE: My son has just recently been diagnosed

with RSS - ...

> Hi Maeve,

> My name is Amy and I had a horrible pregnancy bed rest for three months

and

> the doctors told me they didn't think my daughter would make it. Haven

(my

> daughter) was born at 36 weeks and weighed 2 lbs/ 6 oz. she spent 68 days

> in NICU. She had the nissen procedure and a G Tube placed. She is now 9

> months old and weighs 6 lbs. 7 oz. Haven doesn't eat by mouth but I have

> heard from the other parents that this to shall pass. It is a hard road

but

> each month seems to get a little better. Hang in there, you are not

> alone!!!!

>

> Amy (Lucky to be Haven's Mom)

> Re: My son has just recently been diagnosed

> with RSS - ...

>

> In a message dated 1/19/01 10:35:53 AM Eastern Standard Time,

> Maeve.McEvoy@... writes:

>

> << Sorry this letter is so long - I just want someone to say I know what

> you're going through and you're not alone.

> PS Has anyone had a similar experience to ours? Is there a link

> between RSS and placental insufficiency? >>

>

> Hi Maeve,

> I just wanted to tell you ......I know what you are going through and

> you

> are not alone. My pregnancy was watched as well and I was even placed on

> complete non-working bedrest for the last three months of my pregnancy due

> to

> " placenta insufficiency. " was born at 36 weeks and weighed 3lbs

> 6ozs

> and was evaluated to be 33 weeks gestation. She was labeled a " feed and

> grow " bay in the NICU - where she spent the first 4 weeks of her life.

> I too was devastated when I heard the diagnosis, at 11 mos, with a

> " syndrome " attached to it. And I too felt so alone. I was so afraid of

> what

> the future held ....... I so wanted to be just like everybody else making

> happy - healthy toddler adjustments to life.

> That was not to be for us, and our daughter indeed has RSS. And with

> that diagnosis comes some struggles. But life is wonderful today. She is

> wonderful. She and time have erased so many of my fears. She is very

> bright, active, physically adorable, very personable, sweet as a child can

> be

> and steals the spotlight wherever she goes - for all good reasons! She is

> my

> truly my petite but perfect little girl.

> I encourage you to stay a part of this list. Ask questions. Open you

> heart and mind. You will make it to the other side before you know it,

and

> you and are going to be ok.

>

>

> (Mom to - 35 mos, 32 inches, RSS)

>

>

>

>

>

>

>

>

>

[Guest guest]

Hi Maeve-welcome! My name is Liz and I have a 29 month old son, Nate who we

believe has RSS. He was diagnosed (officially) at about17 months. He is a

twin and I was monitered very closely during my pregancy. They saw he wasn't

growing at about 18 weeks gestation and thought it was because of a problem

with the umbilical cord. His brother was doing well until much later in the

pregnancy. Luckily I had a doctor who didn't believe in delivering the babies

just because they weren't growing well, as long as they grew some, he decided

it would be better to have them inside then out. I am a neonatal nurse, so I

was terrified that they would be preemies and have all kinds of problems. I

also had preterm labor from 20 weeks gestation and was on partial bedrest and

medication. Anyway, the boys were born at 37 weeks, weighing 3-10(Nate) and

3-15(Sam). They didn't have to stay in the NICU and were able to go home with

me. After delivery, they found a small " dead spot " in my placenta for Nate.

So, it is interesting that you had one also. Sorry for the long message, hope

it helps, Liz-Mom of Nate(?RSS)and Sam-29 month old twins and Arianna-9months