Re: Reply to 's Mom from land

[Guest guest]

Hi

Let me put your mind at ease - there is nothing obsessive and

overbearing about your concern for your child's wellbeing. It is so

natural at your stage to have all of this uncertainty - our son is 4

and I still have many of the same questions that you have,

particularly around what to say to others about RSS. It is tough

when so much is going on and questions just keep popping up with no

real solutions. I like things to be black and white,- grey just

annoys me. Through all of the concern for your child and the

uncertainty for his future you often have to be strong, tough as

nails {don't let anyone interpret it as obsessive}.

I can't help you much with eating, since much of what turns my little

guy on is milk based but he really liked squash soups, carrott soups

that were made with chicken broths instead of creams.As for

developing muscle tone the thing that we focussed on for was

the Jolly Jumper - his little legs got pretty strong quite fast. I'm

not sure if the g tube gets roughed up too much but you might

consider this option. We also used an exersaucer. I still pretty

much feel like a fish out of water where RSS is concerned but I hope

some of this helps. Keep strong!

Charlene, mom to , 4 yrs. RSS

>

> Hi everyone,

> Remember me? I think I last posted in August. I thought I would

> give you all an update.

>

> My son has since been officially diagnosed with RSS by a

> team of Drs. 's Hopkins and we have been trying to figure out

> the best way to help live as normal of a life as possible

> when it comes to feeding.

>

> He will turn a year old next month-March 24th and has graduated

from

> the ng tube to the g tube and now to a mic key. We feed him at

> night 30 cal alimentum and during the day he takes a little formula

> with stage 2 and some stage 3 baby food.

>

> I have been researching RSS and talking with all 's doctors

> who are great but the problem is I feel like I just don't know how

> to feed my child. I realize that his condition causes him not to

> want to eat but I just feel determined to figure out how to help

him

> to eat regularly. He has been doing pretty well during the day

with

> the baby food. It is MUCH easier than giving him a bottle.

>

> The doctors are statisfied with his weight gain but ALWAYS push for

> us to do tube feedings during the day. I stand firm that I want to

> do EVERYTHING possible to avoid the tube during the day.

Especially

> since he is at daycare all day.

>

> Thankfully 's progress has been good so far and the drs will

> accomadate my request to either boost the calories of the feeds at

> night or increase the amount he receives. I realize that

> will probably need the tube for some time but I don't want to rely

> on it and take the easy way out. I want to give him a chance to

> experience eating like other kids his age during the day.

>

> I found the magic website very helpful but still manage to think of

> numerous questions. I have found that the best tips and advice come

> from all of us who have hands on experience with children with RSS.

>

> My questions are as follows:

>

> Does anyone have any tips that they have found helpful for eating?

> Whether special receipes, techniques?

>

> Any tips for securing the feeding tube/ sleeping position during

> night time feeds?

>

> has physical therapy twice a month to help him to get his

> muscles stronger to crawl/walk but would anyone know of any insider

> tips that have worked for your child? Toys? Exercises?

>

> How do you explain your childs condition to

friends/family/strangers?

>

> I can't seem to find any books on RSS or even good ones about

> feeding a baby with eating challenges. Does anyone know of any?

>

>

> I hope I don't seem like an obsesive overbearing mother but just

> like each of you I just love my son so much and I want him to

> continue being the smiling, happy- go-lucky boy he is today. And

to

> help him I feel like my husband and I need to be perpared for

things

> to come. I feel the best way is to learn from all of you who live

> it each day. Thank God for this support group!

>

>

> Thanks in advance!

> (Baltimore, MD)

> Mom to

> (11 months, 16lbs 6oz, RSS, Leg asymetry, Acid Reflux, Milk

Allergy,

> Mic Key button)

>