Thoughts and Questions

[Guest guest]

It's been awhile since I've posted. This Summer is just flying by.

Based on the posts - the convention sounded awesome and very

uplifting.

My Ian is doing pretty good. Up until just recently I have taken our

news of his RSS very well. He seems to have a " milder " case at this

point and I worried of course as a parent would but also felt that he

was doing rather well considering his diagnosis. I'm still a firm

believer of taking things as they come as opposed to worrying about

the future. But lately, I seem to be worrying more. We saw his Endo

on Monday and he has gained only 10 oz in 4 mos. I knew this all

along and fortunately he hasn't lost any weight - but, I'm

concerned. We have decided to make an appointment with the Nutrition

Clinic - of which I would have insisted had it not been suggested to

us, and I'm looking forward to getting suggestions about the types of

foods that will help " bulk " him up and hopefully add weight as

opposed to staying the same. Now that he will be 16 months next

week, he's refusing formula, hates whole or 2% milk and only likes

skim milk or water. It's amazing how kids change so quickly - he had

been eating so well between 9 and 13 months - and anything I gave him

he enjoyed. Now, as a typical 15 month old will do - they get picky

about their food. I suppose I just didn't expect it to happen so

early. I was told by our Endo though that this was very normal for

RSS children " as you know " he said. He really is a great Doc. Sorry

I'm rambling. We are going on vacation for 17 days and I'm just

worried about his eating - he get's so distracted when we are out and

usually eats less if he's not in his home environement. I've decided

we will eat in the hotel room and not in restaurants the entire

time. Fortunately, we won't be in a hotel the entire time.

We are having a sweat test done tomorrow. He's been sweating alot

even though his thyroid tests are all normal. We are checking for

malabsorption - but the Endo sais we can most assuredly rule it out -

it's just a precautionary test for now. I guess my true worries are

when we decide to try the growth hormones at age 2 (which is quite

awhile yet) and whether or not he will need a feeding tube.

The other big thought I have is that I have been labeling my son

lately and I hate it. I hate thinking about him as an RSS child. I

wish I could look at him and say " my how big you are getting " as

opposed to thinking " you are so little " . And I've told my Endo that

I'm being much more careful about how I respond to people when they

comment about my son. I have come to the realization that I could be

damaging his ego and his self-confidence if I'm constantly talking

about his smallness and how " little " he is. The other day a woman

commented on how " skinny his legs were " . I told her that they are

great for running. I was so proud of myself to have been able to

come up with that answer. I just pray that I will be able to

continue that thought process and I've been making an extra, extra

effort every day to say something less " labeling " to and in front of

my son. My mom sais I shouldn't be so hard on myself - but, I'm the

most important person in his life (next to my husband - but, he's

always at work so it's mostly me) and his brother has to see as well

that he has just as many great traits as he does. His big brother is

just that - huge - he's in the 95th and 100th percentile all around

and I pray I handle things right so he will " protect " Ian and be a

good big brother. I pray for God's strength.

Thank you to those who bothered to read this terribly long and boring

note.