Re: Jillie update

[Guest guest]

Jillie is in my prayers, and so are you!

I am sorry to hear that things have been tough lately. I

hope she is feeling well soon.

HUGS from CA

[Guest guest]

I hope you all get some rest now that you are home.

Jillie will continue to be in my prayers.

B

5 and Kelli 2 1/2

--- nightnuse4babies

wrote:

>

> Hi Friends,

>

> Jillie has just been discharged from the hospital

> after being

> emergently rushed in this weekend with pneumonia in

> 2 lobes of her

> lungs and widespread atelectasis (areas of collapse

> throughout the

> lungs). She smiled for the first time in 8 days when

> she saw us

> pulling up to the house. She's back to around the

> clock oxygen, and

> nebs and chest PT every 1-2 hrs. It's nice to not

> have my sweaty

> sick toddler plastered to my chest for 2 minutes and

> especially nice

> to be able to get to the bathroom more than once in

> 24 hrs. We look

> like a couple of homeless bums right now not having

> seen a tub since

> her admission!

>

> The liver expert said her biopsy was worrisome but

> wants to hold off

> from doing any invasive testing right now as her

> liver is inflammed

> but staying the same. They also need a lot of space

> between this

> latest episode of sickness and further tests which

> may involve more

> anesthesia. She definitely has a chronic hepatitis

> of some sort but

> why is a mystery. She may have early stage

> sclerosing cholangitis

> which is not a fixable problem. Eventually the bile

> ducts become

> scarred and quit working making the liver fail.

> Absolute worst case

> scenario is need for a transplant.

>

> Anyhow, need to go and surprise Ethan by showing up

> at the school to

> pick him up. I've missed him so much.

>

> Keep Jillie in your prayers for an eventual lung and

> liver recovery!

>

>

>

>

>

>

__________________________________________________

[Guest guest]

Dear ,

I'm sorry this is such a difficult time.

Jillie will be in our thoughts and prayers along with you and the

rest of your family.

mom to Autumn 14 mos RSS, 2 boys and baby girl on the way

>

> Hi Friends,

>

> Jillie has just been discharged from the hospital after being

> emergently rushed in this weekend with pneumonia in 2 lobes of her

> lungs and widespread atelectasis (areas of collapse throughout the

> lungs). She smiled for the first time in 8 days when she saw us

> pulling up to the house. She's back to around the clock oxygen, and

> nebs and chest PT every 1-2 hrs. It's nice to not have my sweaty

> sick toddler plastered to my chest for 2 minutes and especially

nice

> to be able to get to the bathroom more than once in 24 hrs. We look

> like a couple of homeless bums right now not having seen a tub

since

> her admission!

>

> The liver expert said her biopsy was worrisome but wants to hold

off

> from doing any invasive testing right now as her liver is inflammed

> but staying the same. They also need a lot of space between this

> latest episode of sickness and further tests which may involve more

> anesthesia. She definitely has a chronic hepatitis of some sort but

> why is a mystery. She may have early stage sclerosing cholangitis

> which is not a fixable problem. Eventually the bile ducts become

> scarred and quit working making the liver fail. Absolute worst case

> scenario is need for a transplant.

>

> Anyhow, need to go and surprise Ethan by showing up at the school

to

> pick him up. I've missed him so much.

>

> Keep Jillie in your prayers for an eventual lung and liver

recovery!

>

>

[Guest guest]

,

Somehow I missed your original message about Jillie. I'm so glad

that you two are now home, in your own environment and your own

beds. That can make such a difference in how you feel.

I'll bet Ethan was very surprised and thrilled to see you at school

when you went to pick him up. Siblings take things so hard and they

miss their mommies. Even my almost 20 year old daughter still gets

bent out of shape when Max is in the hospital.

I hope Jillie recovers quickly and that you can find out the source

of her liver problems. We are all pulling for you both!

Jodi Z

[Guest guest]

hey victoria!!

i am soo sorry to hear what you are going through with little

jillie!! i will keep her in my thoughts and prayers!! give her a

((HUG)) from me!! hang in there, ((HUGS)) to you as well!!

jodie c

[Guest guest]

Congrats Jillie and . I remember Jillie from the convention last

year-she is so cute. That is awesome that she is on the charts. It sounds like

she is doing well. And as for you , anytime anyone can lose weight

having a rss/sga child... it's a miracle!

---------------------------------

[Guest guest]

HAPPY BIRTHDAY TO JILLIE!!!! oh my god i cant believe she is going to

be 3 already!!! she is such a doll!! glad to hear she is doing

well!! and i guess we will " see " " less " of both of us at

convention!!! that is great for you, congrates!! i am on weight

watchers!! cant wait to see you again!! victoria, can you send me an

updates pic of jillie and a short bio and statement about what it means

for you to be apart of magic, i am making a display for our dinner

dance!! thanks!!

((HUGS))

jodie c

[Guest guest]

,

Hey, it is wonderful to hear from you again. Wow, I can't believe

Jillie is going to be 3 tomorrow! Happy Birhtday to her. But, I do

remember talking at Convention last year and you were telling me when

her birthday was. is exactly one week behind her! ) He is

the 23rd. Where does the time go? I can't believe they can be 3

already!!

I am glad to see that she is able to get off of her tube for a

while. 7 hours, wow, that is great. is off about 8 hours out

of the day now. It is so nice to have that freedom now. It really

sounds like things are going well for you guys. I know what you mean

about the school thing. started in a playgroup this past

January and I was sooooo nervous. I was the clingy one. I stayed

with him the first two weeks! ) He had no problem the first time

I left him. He was like " Bye mommy! " Made me cry. After all we

had been through together, I had a hard time letting go. I was and

still am VERY protective of him.

Oh yeah, congrats on the weight loss. I wish I could get up the

motivation. UGH! Why can't I eat my junk and be skinny too!? Life

sucks! ) Hee, hee.

Jodi

> Hi Guys,

>

> It's been a while since I posted as I have been busy with getting

> Jillie ready for school! She is 3 tomorrow! Can you believe it??

>

> She is doing a little better with her food and fluids so she is off

> the feeding pump for a total of 7 hrs a day. She has taken a liking

> to coffee ice cream and Boston bean dip - both loaded with

calories.

> Will still only drink water and we got beyond the 8oz per day mark

> for the first time last week.

>

> She can now do about 6 or 7 steps by herself if she thinks you are

> holding onto her. She gets up the stairs pretty fast. She crawls

like

> a maniac. She's up to about 80 words in a combo of sign or

> approximation of the word. She is on the growth chart for the first

> time - 5% for weight and almost 10% for height.

>

> And she starts school tomorrow! The school is being great and has a

> great IEP in place which seems to cover all the bases. She will go

to

> school with a nurse and if the nurse is out sick, I can go in her

> place. However, I feel so nauseous thinking of her in school. I

> visited her class the other day and the kids are huge at the side

of

> her. It didn't seem to phase her though.

>

> And soon I have to deal with the dreaded liver issue that she has

> which I'm trying to ignore. I'm not sure I'm up to dealing with

> another major medical complication.

>

> I guess that's it apart from my weight loss on nutrisystem (13.5

> pounds in 4.5 weeks). Hopefully when y'all see me at convention,

I'll

> be a shadow of my former self. Or as my 6yr old son put's it " mama

is

> trying to get thin and smooth " !

>

> Have a great Sunday!

>

> Best wishes,

>

>

[Guest guest]

,

I hope all goes well with Jillie tomorrow. I'm sure you will be teary

as you send her off to school, but you know she is going to love it.

Be sure to take plenty of pictures as she starts her new adventure!

I'm so glad the school has made up a great IEP and is aware of

Jillie's needs. We special ed teachers try so hard, but sometimes

there are those who just don't have the heart and interest and make

things so difficult. Having a great IEP and supportive staff makes

all the difference in the world. We've experienced the same with Max

in high school. What a relief!

Make sure you post the details tomorrow! I'll be waiting.

Jodi Z

[Guest guest]

.

I will be at the convention again this year. I will look for you but,

please keep an eye out for me. I would love to catch up and hear all

about Jillie. It sounds like she has made some really great strides

this year.

J

> Hi Guys,

>

> It's been a while since I posted as I have been busy with getting

> Jillie ready for school! She is 3 tomorrow! Can you believe it??

>

> She is doing a little better with her food and fluids so she is off

> the feeding pump for a total of 7 hrs a day. She has taken a liking

> to coffee ice cream and Boston bean dip - both loaded with calories.

> Will still only drink water and we got beyond the 8oz per day mark

> for the first time last week.

>

> She can now do about 6 or 7 steps by herself if she thinks you are

> holding onto her. She gets up the stairs pretty fast. She crawls like

> a maniac. She's up to about 80 words in a combo of sign or

> approximation of the word. She is on the growth chart for the first

> time - 5% for weight and almost 10% for height.

>

> And she starts school tomorrow! The school is being great and has a

> great IEP in place which seems to cover all the bases. She will go to

> school with a nurse and if the nurse is out sick, I can go in her

> place. However, I feel so nauseous thinking of her in school. I

> visited her class the other day and the kids are huge at the side of

> her. It didn't seem to phase her though.

>

> And soon I have to deal with the dreaded liver issue that she has

> which I'm trying to ignore. I'm not sure I'm up to dealing with

> another major medical complication.

>

> I guess that's it apart from my weight loss on nutrisystem (13.5

> pounds in 4.5 weeks). Hopefully when y'all see me at convention, I'll

> be a shadow of my former self. Or as my 6yr old son put's it " mama is

> trying to get thin and smooth " !

>

> Have a great Sunday!

>

> Best wishes,

>

>

>

>

>

>

>

>

>