Re: Isaac's birthday...2yr check up...venting

[Guest guest]

HAPPY BIRTHDAY ISAAC!!! mimi, i was thinking about you guys this

afternoon after i read that it was autumn birthday!! ((HUGS))

jodie c

[Guest guest]

Mimi,

I hear you. I have so been there with Max and feeling the same

way. But I can assure you that giving the gh shots is really not

bad. We all worry about sticking our kids, hurting them, how they

will react. Yet it seems that the kids do adjust and they, and we,

do just fine. I think that the anticipation is worse than the

reality of actually doing it.

Max has been getting his shots for 15 years now. Like everyone

else, it was not easy in the beginning, but not that hard, either.

We did various things to help him adjust - like letting him wipe the

spot on his thigh that would get the shot, letting him inject a

chosen stuffed animal after we injected him.... And, like others,

at some point he was angry about the shots and chose to get them

while he was sleeping. I worried that he would not feel safe in his

own bed, but that did not happen and it worked out to be the method

of choice for him. That is important. Let him participate, help

make decisions, etc. Let him feel as if he has some control over so

many things that he does not.

Also keep in mind that Max is approaching 5'6 " now. We NEVER

thought he would make it to that height. He was so tiny, so far

behind. Dr. H. told us that she would get him to grow and we still

doubted her. At one point he was determined to be gh resistant and

we doubted her even more. All of a sudden, he began to shoot up and

fill out. Now no one would ever believe he has been through all

that he has.

As for your daughter, that is a tougher issue. I don't know how she

will react. I can tell you about my daughter, though. At 20, she

has a great deal of anger about what we have gone through with Max.

She is mad that I was away so often with Max in the hospital. She

resents the attention that Max has gotten. She is scared for her

brother and what he has been through and what the future may hold.

We thought she was doing so well with all of it, while all along she

was angry, scared and hurt. We are having lots of trouble with her

now and I wish I had been able to head it off. I guess we were

just so involved with Max that we needed her to be okay. We did not

see the signs.

I don't mean that this will happen with your daughter. I know

others who have had older siblings and they have been okay. But I

share Jenna's story so that others can be aware and look for signs.

(As a side note, though, we did try to get her into counseling at

various times " just in case, " and she refused to go.)

Mimi, you are doing this for the benefit of your son. You are

strong enough to do it. And you will. We will all help you through

it.

Jodi Z

[Guest guest]

What a day. I am so sorry. I hope tomorrow is better! If your in

laws are more comfortable in Spanish and want to participate in RSS

SGA discussions have them feel free to join the spanish support

group

yahoo

grupos

apoyosrsrss

Chao!

>

> First let me say Happy Birthday Autumn!! I agree that the time

flies

> by so fast.

>

> Isaac turned 2 yesterday and had a wonderful party! The theme was

> finding Nemo and he cried after each person left and said " Te

amo " .

> My mother-in-law only speaks Spanish to him and it means I Love

you.

> It was so sad and sweet at the same time.

>

> This morning I took him in for his 2 year check-up and his weight

> gain was awful. It was the worst gain he has had ever. I was so

very

> disappointed. He had been doing so well and he is really eating

alot

> but the gain was just not there. The doc also said that his

tonsils

> are huge and is sending us to an ENT doc. His pediatrician thinks

> they will need to come out soon. THis scares me because it is

> another hospital stay and I know surgery is extra risky for our

> kids. The doc then asked me if he was " running yet " . He isn't even

> walking or standing independently for that matter. I kept it

> together until we got to the car but as soon as I turned the key

in

> the engine I couldn't stop crying. I was playing the " why " game

and

> blaming myself. I guess I got my hopes up after the doc said

Isaac

> could finally reach the growth charts. My heart aches for my son.

I

> am so tired of all the doctors and all of the therapy..how I wish

he

> didn't have to deal with all of it. We are meeting with the endo

on

> Feb. 2nd to discuss Growth Hormones. I am worried..what if I can't

> do it- how am I going to be able to stick him every day? He gets

> prodded and poked so much that he cries when we enter the parking

> garage at the Children's hospital because he knows what is coming-

> and soon he will have to be poked at home! What are the

> psychological ramifications of daily injections for so many years?

> Then my thoughts turn to my daughter. Will she resent me for all

of

> the time I have to spend with Isaac when she gets older? Will she

> think I don't love her as much as her brother?

> I hate feeling like this..I haven't in a really long time but I

> guess we are all allowed to have a bad day every once and awhile..

>

> Mimi

> Mom to Isaac- RSS, MCAD, Hypothyroidism 2 yrs 18lbs 13oz, 31

inches

> Sofia- 4 months

>

[Guest guest]

Hi! Happy birthday to Isaac! I am so glad he had a great party. I

am sorry things are rough now. Hang in there, you are doing a great

job and don't ever think otherwise.

>

> First let me say Happy Birthday Autumn!! I agree that the time

flies

> by so fast.

>

> Isaac turned 2 yesterday and had a wonderful party! The theme was

> finding Nemo and he cried after each person left and said " Te amo " .

> My mother-in-law only speaks Spanish to him and it means I Love

you.

> It was so sad and sweet at the same time.

>

> This morning I took him in for his 2 year check-up and his weight

> gain was awful. It was the worst gain he has had ever. I was so

very

> disappointed. He had been doing so well and he is really eating

alot

> but the gain was just not there. The doc also said that his

tonsils

> are huge and is sending us to an ENT doc. His pediatrician thinks

> they will need to come out soon. THis scares me because it is

> another hospital stay and I know surgery is extra risky for our

> kids. The doc then asked me if he was " running yet " . He isn't even

> walking or standing independently for that matter. I kept it

> together until we got to the car but as soon as I turned the key in

> the engine I couldn't stop crying. I was playing the " why " game and

> blaming myself. I guess I got my hopes up after the doc said Isaac

> could finally reach the growth charts. My heart aches for my son. I

> am so tired of all the doctors and all of the therapy..how I wish

he

> didn't have to deal with all of it. We are meeting with the endo on

> Feb. 2nd to discuss Growth Hormones. I am worried..what if I can't

> do it- how am I going to be able to stick him every day? He gets

> prodded and poked so much that he cries when we enter the parking

> garage at the Children's hospital because he knows what is coming-

> and soon he will have to be poked at home! What are the

> psychological ramifications of daily injections for so many years?

> Then my thoughts turn to my daughter. Will she resent me for all of

> the time I have to spend with Isaac when she gets older? Will she

> think I don't love her as much as her brother?

> I hate feeling like this..I haven't in a really long time but I

> guess we are all allowed to have a bad day every once and awhile..

>

> Mimi

> Mom to Isaac- RSS, MCAD, Hypothyroidism 2 yrs 18lbs 13oz, 31 inches

> Sofia- 4 months

>

[Guest guest]

Hi Mimi

I can remember all these thoughts and feelings and I still have

them. Liam is 4 1/2 now, and it seems there is always something more

our children need to suffer through. BUT Liam is suprisingly a happy

and very strong kid.

I didnt want to start Liam with growth hormone,and for the first

year we went from him being very anxious and scared of the needle to

hardly noticing we had done it. Believe it or not, tonight Liam

cried that he wasnt having an injection (Liam has his gh over 6

nights a week) because he likes getting it out and getting the pen

set up etc etc.

Liam knows which Dr we are going to see and who does what. Dr

squeezes his stomach to see how his constipation is going.

He nows tells him when it hurts and when it doesnt. Dr Cowell

measures him and sometimes sends him for blood tests, and Liam knows

the place we have blood tests.

I had to hold Liam down the other day while he had a contrast enema

(150mls of fluid up his backside) the thoughts that went through my

head about how inappropriate and how it would effect his life will

haunt me for a long time.

I know that I am doing whats best for Liam though, he has learnt to

deal with so much more than most children will have to deal with in

a life time and all I can do is believe he will be better off for it.

We have been down the horrible path of worry about the sibling who

is missing out, and apart form saying to remember the one on one

time, you have to believe in yourself. You would not of voiced all

these feelings if you were not a wonderful mother, who WIll do the

best for your kids.

Happy Birthday Isaac!!

How many kids have lots of love being sent to them from all over the

world.

Jody(mum to Liam and Cameron) Who would be a parent?????

>

> First let me say Happy Birthday Autumn!! I agree that the time

flies

> by so fast.

>

> Isaac turned 2 yesterday and had a wonderful party! The theme was

> finding Nemo and he cried after each person left and said " Te

amo " .

> My mother-in-law only speaks Spanish to him and it means I Love

you.

> It was so sad and sweet at the same time.

>

> This morning I took him in for his 2 year check-up and his weight

> gain was awful. It was the worst gain he has had ever. I was so

very

> disappointed. He had been doing so well and he is really eating

alot

> but the gain was just not there. The doc also said that his

tonsils

> are huge and is sending us to an ENT doc. His pediatrician thinks

> they will need to come out soon. THis scares me because it is

> another hospital stay and I know surgery is extra risky for our

> kids. The doc then asked me if he was " running yet " . He isn't even

> walking or standing independently for that matter. I kept it

> together until we got to the car but as soon as I turned the key

in

> the engine I couldn't stop crying. I was playing the " why " game

and

> blaming myself. I guess I got my hopes up after the doc said

Isaac

> could finally reach the growth charts. My heart aches for my son.

I

> am so tired of all the doctors and all of the therapy..how I wish

he

> didn't have to deal with all of it. We are meeting with the endo

on

> Feb. 2nd to discuss Growth Hormones. I am worried..what if I can't

> do it- how am I going to be able to stick him every day? He gets

> prodded and poked so much that he cries when we enter the parking

> garage at the Children's hospital because he knows what is coming-

> and soon he will have to be poked at home! What are the

> psychological ramifications of daily injections for so many years?

> Then my thoughts turn to my daughter. Will she resent me for all

of

> the time I have to spend with Isaac when she gets older? Will she

> think I don't love her as much as her brother?

> I hate feeling like this..I haven't in a really long time but I

> guess we are all allowed to have a bad day every once and awhile..

>

> Mimi

> Mom to Isaac- RSS, MCAD, Hypothyroidism 2 yrs 18lbs 13oz, 31

inches

> Sofia- 4 months

>

[Guest guest]

Mimi,

didn't start walking until he was 2 years and 4 months. I know

of other RSS children who were just as late walking. Now at almost 6

walks, runs, climbs etc. Yes, he does it all a little slower

than the other kids, but he is doing just fine.

Hang in there,

Judith, Steve, (RSS) and (non RSS) almost 6 year old

twins

[Guest guest]

Happy Birthday Isaac!!!!

Mimi, I know exactly how you feel...Dalia turned 2 in November and

more and more lately I feel so guilty about all the doctor's visits,

therapies, mealtimes (especially), etc. She is well into the throws

of the " terrible " two's and has a mind of her own...so that makes

things more and more difficult...whenever we enter the doctor's

office or hospital she also cries and says " all done " , " go home "

over and over...it breaks my heart. But, I know that all of it is

the best for her and necessary so I try to make the best of it. I

stress out every day about her eating and I'm realizing that she

definitely picks up on that, so I try to figure out ways to relax

more about it (NOT EASY)..

Sorry you had a bad doctor's checkup, but there will be a good one

to follow, I'm sure.

We are also starting GH any day now and I wonder how the daily

injections will change her forever...but, I also wondered this about

her meds when we started and she hated it, but now it is so routine

that she expects it and doesn't even seem phased by it at all. I

think Isaac will adjust well as our kids seem to be able to do....he

has a wonderful mommy to help him through it.

Take care,

Sheryl

>

> First let me say Happy Birthday Autumn!! I agree that the time

flies

> by so fast.

>

> Isaac turned 2 yesterday and had a wonderful party! The theme was

> finding Nemo and he cried after each person left and said " Te

amo " .

> My mother-in-law only speaks Spanish to him and it means I Love

you.

> It was so sad and sweet at the same time.

>

> This morning I took him in for his 2 year check-up and his weight

> gain was awful. It was the worst gain he has had ever. I was so

very

> disappointed. He had been doing so well and he is really eating

alot

> but the gain was just not there. The doc also said that his

tonsils

> are huge and is sending us to an ENT doc. His pediatrician thinks

> they will need to come out soon. THis scares me because it is

> another hospital stay and I know surgery is extra risky for our

> kids. The doc then asked me if he was " running yet " . He isn't even

> walking or standing independently for that matter. I kept it

> together until we got to the car but as soon as I turned the key

in

> the engine I couldn't stop crying. I was playing the " why " game

and

> blaming myself. I guess I got my hopes up after the doc said

Isaac

> could finally reach the growth charts. My heart aches for my son.

I

> am so tired of all the doctors and all of the therapy..how I wish

he

> didn't have to deal with all of it. We are meeting with the endo

on

> Feb. 2nd to discuss Growth Hormones. I am worried..what if I can't

> do it- how am I going to be able to stick him every day? He gets

> prodded and poked so much that he cries when we enter the parking

> garage at the Children's hospital because he knows what is coming-

> and soon he will have to be poked at home! What are the

> psychological ramifications of daily injections for so many years?

> Then my thoughts turn to my daughter. Will she resent me for all

of

> the time I have to spend with Isaac when she gets older? Will she

> think I don't love her as much as her brother?

> I hate feeling like this..I haven't in a really long time but I

> guess we are all allowed to have a bad day every once and awhile..

>

> Mimi

> Mom to Isaac- RSS, MCAD, Hypothyroidism 2 yrs 18lbs 13oz, 31

inches

> Sofia- 4 months

>