Re: new to group - Reply to Lori from Beth

[Guest guest]

Hi Lori. I don't have much advice about food except we just went with what she

liked. If she wanted three yogurts for her snack, she got them. Sydney never

had any food aversions, she just ate in very small amounts and if she got sick

we were in real trouble because she would just stop eating.

The miracle for us was the gut motility drug. She was only on it for about 8

months but it worked wonders.

Unfortunately no one suspected RSS until Sydney was about 18months old.

Everyone had assumed that she had Praeder Willi Syndrome until the genetic tests

came back negative. One of the concerns that I think we missed was

hypoglycemia. Sydney did sometimes sweat during the middle of the night and

because no one was looking at RSS, it was never seen as a concern. She had her

blood sugars checked once every 4-6 months because of all the blood tests but

that was it. Anyway, this doesn't happen anymore and she has been eating

better. I look back on this and if I had known, I would have been much more

proactive about feeding more often at night. Sydney was very difficult to feed

at night, she was hard to wake up and had an even worse suck at night than

during the day. However, if I had known what was going on I would have been

much more insistent.

Physio and OT have been godsends for Sydney. She didn't walk until she was 21

months old (19 corrected) and never did really crawl, she bumscooted. Her

therapists really pushed her and have been amazing to work with. One big

suggestion is if Chloe is behind in motor skills or speech push for the services

to begin as soon as possible. Sydney was having weekly physio at 4 months and

OT started at 6 months.

The biggest problem is how other people treat Sydney and Leah. Everyone thinks

that Sydney is the younger sister and will talk to her like she is 10 months

old, whereas people are more likely to have a conversation with Leah. This is

frustrating because speech is a big issue with Sydney and she needs people to

speak to her at her age, not her size. I know it is difficult for other's to

know that she is just small but ...

It's funny because I saw the " twin bond " in the hospital when they were born

(Sydney was almost the same size as Chloe - 2p. 11oz, Leah was 4p. 8oz.) but

because they came home at different times and were so different developmentally,

I never really saw that special connection. However, now that Sydney can walk

and run with Leah they are so close.

Enjoy the babies. I can barely remember parts of the first year. I was so

tired and even though I had lots of help my older daughter had just turned two

when they were born and still needed lots of attention. I remember potty

training while I was breastfeeding the twins. I would just get one of them

started and Charlotte would need to go. It was crazy but I'm sure you are

starting to notice a difference at 9 months. By the time they hit a year it is

really much less hectic. Good luck!

Beth

new to group

Hi my name is Kim I have three sons the youngest is he is

12 weeks and is being followed for suspected RSS. He was born 12/9/05

at 36 weeks weighing 3#12oz and 16.5 inches long. He has curved pinky

fingers which is one of the main reasons they began to suspect it.

We've been denying that this is the case. Today we went back to our

geneticist who still says this is RSS. He weighs 7#2oz and is 20.5

inches long. That seems like a great weight gain and growth to us! I

guess I'm wondering if there are varying degrees of RSS? He is

breastfed but we also give bottles of expressed milk with 22 calorie

formula mixed in. He doesnt have a huge appetite but today because we

were away from home he has had 4 bottles of 3oz each which is alot for

him. The geneticist said there is no test to give him that we'll just

have to watch and see. She's doing a followup u/s on his abdomen and

kidneys (his first was fine) but she wants to follow him for something

to do with his kidneys (tumors?). We see her again at a year. I am

looking forward to getting to know more about RSS and getting to know

more parents dealing with this. Thanks for any BTDT advice or stories

you'd be willing to share.