Re: Re:Jodi R.

[Guest guest]

Jodi,

Alyssa was a little taller than ! But only about an inch or so. She

just adapted! Our kids are amazing that way. That said the backpack Dr. H

gave us was plastic and the top tore after we had had it only a week or so.

If you pump the bag well it doesn't have to stay upright. However, it was

that issue that really made us use the Zevex pack. The one Dr. H gave us is

green. I can send it if you like. The tear doesn't really hinder it's

usage, I just liked Zevex's better. I have also seen little backpacks at

payless shoe source and also at dollar stores, dollar general and in toy

sections!!

Dayna

Sharon, and EVERYONE! About -LONG

> >

> >

> > > Yah! I am sooo glad you remembered! ) is actually

> doing

> > > alright right now. I was reading the posts from the last few days

> > > and was into the controversial ones about posting some good things

> > > our kids are doing too. Let me just announce that is

> WALKING

> > > now. He started right before his 2nd birthday, which was May

> 23rd.

> > > And let me also say, he is walking like he has done it for

> months! I

> > > couldn't believe how one day he was scared to take even one step,

> > > then the next day it was six steps, the next it was 20, then that

> is

> > > ALL she wrote. I haven't been able to keep up with him since!

> Hee,

> > > hee. He has an IV pole that I have to push right behind him

> since he

> > > is g tube fed 22 hours out of the day. Yes, I said 22. We went

> from

> > > 23 hours to 22 hours a day. His pediatrician has GRANTED us an

> extra

> > > hour off to try to feed some REAL food! I am so glad he

> has

> > > two hours off now, because that one hour a day went faster than

> you

> > > would believe. Since he is walking now, he can have two hours of

> > > freedom from his stupid pole and us being two steps behind him.

> As

> > > for the feeding him REAL food......hmmm, not so well, really. He

> > > only wants to take a few bites. Some day he will only take one

> bite

> > > and say, " All done. " I am like, " What? No way. More bites

> > > please. " He's like, " ALL DONE! " So, it is not going all that

> well,

> > > but maybe he is still even kinda full after two hours off, since

> he

> > > is fed the other 22 hours. I don't know. Maybe I am just making

> > > excuses. But, his weight is doing pretty well right now,

> compared to

> > > his height. He is 28 " long and 18 lbs. 6 oz as of last Tuesday.

> His

> > > ped. said he was at the 25th percentile for weight vs. height.

> > > Anyone verify that?? ) But, for the most part, has made

> > > HUGE improvements in the last few months, after seeing Dr. H.

> So, I

> > > owe her BIG time. If you saw a picture of from his last

> > > birthday and compare it to this year, you would not beleive it was

> > > the same kid.

> > >

> > > So, my message here today has a little of frustration to it, and a

> > > little of the good news too. I am still VERY annoyed with the

> tube

> > > feedings, and get down and wonder if my little guy will EVER get

> away

> > > from it. Especially when he is walking and so happy when he can

> go

> > > off by himself and not have to worry about getting too far from

> his

> > > pole. Plus, let me add a little self pity here. It is hard for

> us

> > > to be there with every step he takes, because we do have another

> > > child and stuff to do around here. So, that brings me to my next

> > > thought/question. Does any one have any suggestions for what I

> can

> > > do with 's pump and feeding bag to allow him more

> > > independence? I know some of the kids get back packs, but I

> wonder

> > > if it will be too heavy for him. Pat, I know got one.

> How

> > > big was he when he got his. Should I email Dr. H and tell her

>

> > > is walking and see if she could bring him a backpack to the

> > > convention?

> > >

> > > So, Sharon, I am sure you are sorry you asked how is

> > > doing! ) I just had so much on my mind, especially after

> reading

> > > the latest posts, that I guess I went on rambling. Yes, another

> LONG

> > > post by me! )

> > >

> > > Oh yeah, and is talking very well. The thing with him and

> his

> > > milestones seem to be this. Yes, was one of the RSS kids

> that

> > > hit his milestones late. Especially gorss motor skills. Like I

> > > said, he wasn't walking until 23 months, but his language skills

> have

> > > always seemed to be within the range. But, once he got the skill

> > > down, he took it to a whole new level, like he had been doing it

> for

> > > a while. It just took him some time to get it down. His

> therapists

> > > are amazed by him each time they see him. They introduce

> something

> > > new to him he can't do that week, but the next week he is doing it

> > > like an old pro. As for the talking, he is saying things that we

> > > don't say. He just puts words together on his won, and we are

> > > shocked by it.

> > >

> > > So, that is my update on . We are still fighting with the

> bad

> > > weight gain, thus the 22 hour feeds plus trying to feed him

> orally,

> > > but we are also in the midst of perfection with his talking and

> > > walking. I am so proud that we took him to New York to see Dr. H.

> > > and to see the INCREDIBLE progress he made because of that one

> trip.

> > > I have to say, it was a VERY frustrating and nerve racking trip,

> and

> > > I questioned why I went in the first place, but to see him now is

> a

> > > testament as to why I want to go to convention and see her

> again. I

> > > am hoping that there will be goods news from her and that she will

> > > also be pleased with his progress. I wish I could express to you

> all

> > > just how much difference has been made in him. It truly is

> amazing.

> > > He was one of the RSS kids that had trouble holding up his head.

> > > Shoot, for the longest time his head was HALF his body weight. It

> > > was really unproportionate to his body. After going to New York

> and

> > > putting on some weight, he was able to hold his own head up and

> start

> > > seeing the world upright, instead of laying down.

> > >

> > > Anyway, I am proud of , and the strides that he has made.

> I am

> > > sorry this is so long, since I haven't been on here lately I have

> so

> > > much to tell everyone. I hope you can forgive me with this LONG

> > > post, just this once. I wanted to add some positives and show

> people

> > > waht a HUGE difference can really happen in our kids.

> wasn't

> > > diagnosed with RSS until 17 months old, and prior to that, we ad

> so

> > > many questions, and even wondered what his life was going to be

> > > like. Now I know that he will be fine. Just a few fedding

> issues,

> > > and weight and height issues to overcome, but he will rteally be

> > > fine. Just like Sharon is! You are such an inspiration. I told

> you

> > > that before, and I always hoped was going to be fine, too.

> > > And, now I know he will be. He is really on the path to be

> > > a " regular " kid! )

> > >

> > > Sorry so long, guys,

> > > Jodi R.

> > > One proud momma

> > > 18 lbs. 6 oz., 28 " , Prilosec

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >