Welcome

[Guest guest]

Welcome to the group, . I have an 11-year-old son who wasn't

" officially " diagnosed with RSS until he was 9.75 years old. I can

totally relate to everything you wrote about Hailey. was also

12 weeks early, weighing 15 oz. I think he was one of the smallest RSS

babies on this listserve. He was in the NICU for 217 days until he

reached his discharge weight of 4.5 lbs. I, too, thought (or hoped) he

would outgrow many of the preemie problems (and believe me he had MANY

of them). He had stage 3 ROP which regressed, and now he just has scar

tissue left from it which hasn't caused him any problems. also

had a hemangioma, but it was on his neck. This disappeared right on

target when I was told that it would - around 5 years of age. I can't

even tell you how many times he has had pneumonia, RSV, and other types

of respiratory issues with multiple hospital admissions. However, the

majority of hospital admissions stopped when he was around 3.5 years

old. He continues to see many specialists on a regular basis,

including the endocrinologist, gastroenterologist, orthopedic doctor,

and orthodontist/dentist. He used to see specialists in every field,

and I mean EVERY field. If we had a day without 1 or even 2

appointments when he was younger, it was very rare! I can understand

your frustration dealing with all of Hailey's needs, but trust me, it

gets easier over the years. Don't get me wrong, still has

complicated issues, but they are nowhere near the intensity they were

when he was younger. His biggest obstacles now are that he still has a

g-tube and he wears a back brace for kyphosis/scoliosis. This doesn't

stop him from doing anything a typical kid would do. In fact, most

people wouldn't even realize anything was wrong with him, except for

the fact that he is much smaller than his peers. Hang in there

! It's an emotional roller coaster now, but it will get better

with time. In the meantime, this listserve is a great source of

support for you. All of us can empathize with what you are going

through, so feel free to vent anytime.

Kim C.

Hi, I joined this group a few weeks ago and was going to read the

posts before posting to the group. I decided to go ahead and post

since there are so many post. I am trying to learn about RSS because

altough my child has not been tested for this, she shows many of the

signs of RSS.

Hailey is 3 years old and weighs 20 lbs. She was born 12 weeks early

and weighed 1 lb 12 and 1/2 ozs. She was small for her gestational

age and grew very slowly while in the NICU. She stayed in the NICU

for 68 days until she reached her " going home " weight of 4 lbs.

While in the NICU they tested her for everything they could think of

(not RSS, but everything else that could go wrong). They even tested

my breastmilk to make sure it had enough calories. Most breastmilk

is 20 cal. and mine was 28 so they figured that was surely not the

problem.

All this time I thought that I just had a normal preemie and that

everything would work out. They kept telling me that most preemies

catch up by the time they turn two.

We have had all kinds of specialists in the mean time. We had to go

to a Retina specialist because she had ROP and that finally cured on

its own so that was one that we could mark off of our list.

The second one came when she was admitted to the hospital for

pneumonia. The children's hospital that she was admitted to wanted

to get her seen by a genetics doctor while she was there because of

her size. This doctor checked a few things and done a MRI because of

her hermangyomia (not sure on the spelling)on her back, so they

could be sure that it was not interferring with her spinal cord. She

recommended eventually that we send off her blood work to the Mircle

Foundation to check for RSS. The only thing is that they do not

accept her insurance and we can not afford the test.

Third came endo. We have been seeing her every six months. She is

wanting to put Hailey on GH, but we are very worried about the side

affects and everything else that could go on and I really don't want

her to have to have a shot every single day. I feel like she has

been stuck enough. On the other hand I want to give them to her

because I want to do everything possible to help her. I just don't

feel it is appropriate to give her the shot when we don't really

know why she is not growing and her normal GHs are fine.

Fourth came the gastro. For the first 13 months of life, Hailey had

severe dirreaha and then it went straight to constapation. She has

had the latter every since. Now she is on Lactoluse and has been on

it every since we started going to him. He wants to eventually wean

her off of it, but probably won't for a while yet.

With the last hospital stay (pneumonia again) they are suggesting

sending her to an allergy specialist. Hailey has asthma and seems

like everything sets it off. We are trying to keep her from getting

sick.

I don't know if any of you are having all of these problems, but I

just don't know what to do. No matter how bad I wantted to, I could

not get a job because she stays sick so much and has to go to so

many specialist. I am about ready to throw up my hands and say I

quit. I know I can't because Hailey needs me so bad, but I am so

frustrated. I know this is long so I will post later. If anyone has

any suggestions on this please let me know.

[Guest guest]

I love Aussies

<FONT face="comic sans ms" color=#40007f size=3> Soulliere & nbsp; <IMG src="http://us.i1.yimg.com/us.yimg.com/i/mesg/tsmileys2/50.gif"></FONT>

To: Breathe-Support Sent: Thu, November 5, 2009 9:15:05 PMSubject: Welcome

Of course you can fit in ..we've plenty of heart space for everyone!

Now I'm the resident Aussie on the Board & just happen to be up & at it on the Web at the moment...I'm a very haphazard 'Welcomer'!

oogroups.com, "johnsbatik" <johnsbatik@. ..> wrote:>> > Hey Guys:> > I'm rather new to this group. I usually don't say much, but now that my> pulmodude, just today< confirmed that I do have IPF I'll be hanging> around and asking lots of questions.> > I love the friendleness of this group. How much you care and know about> eachother.> > I hope I can fit in.> > JOHN>

[Guest guest]

> >

> > I'm a newbie too!! and I read almost everything at least everyday if

> not every other. But I do know how everyone feels with being tired all

> the time. I'm pretty tired of this already and was only diagnosed in

> July. But I see that this all comes with it, So I do rest when I can.

> Really tired after I work all day. Don't know how long I'm going to be

> able to do this as on O2 24/7 with out oxygen my O2 is maybe a 86

> standing, now if I walk any it will drop to the mid 70's. Get to see a

> ILD doctors at National Jewish in Denver , unfortunately not until Feb

> 1. I feel it is really progressing fast which really s****. We will see

> what they say.

> >

>