I need help...long.

[Jai]

Still keeping DGD in prayers.

[Screamer]

Good morning everyone.

No real change today. They will be changing the treatment course today. We don't know what it is yet. April says DGD is getting plenty of nourishment and the fluids are looking better.

As soon as I get a run down on the next avenue of treatment I will up date it.

Thany you Nurseypoo, Oreo, Munka and Jai and any one else stoppping by,

Mi

[Kim]

Mimi, I'll keep her in my prayers as well.

This is gut-wrenching... I hate to hear that anyone is suffering but it is particularly heartbreaking to hear about the wee ones.

[Screamer]

Now I find out that the insurance will only pay for 30 days in hosp care. It's been 16 so far.

What will they do throw her away?

Nutz. Just something else to worry about. But that's my job.

Mi

[allynnegirl]

Just found this thread ... for your family and the doctors to have a breakthrough.

[walkingwoman]

[rootbeer]

Originally Posted by Screamer

Now I find out that the insurance will only pay for 30 days in hosp care. It's been 16 so far.

What will they do throw her away?

Nutz. Just something else to worry about. But that's my job.

Mi

Try not to worry

[Screamer]

ok Monday morning update. April got DGD to play with fruit loops. They were acting silly and DGD licked the fruit loops crumbs off her fingers. Then she cried and screamed but she did indeed got a taste of fruit loops.

and at the same time.

Also she is now able to brush her teeth and rinse her mouth. But does not swallow.

Again and .

One step forward.

The brushing her teeth really gets me though. Of course she is not swallowing but it is getting things into her mouth.

I'll hake that as a big

Mi *almost---> but still --->

[whippetlady]

Mimi- glad to hear of the baby step forward.

[Stormyskies]

Still praying. Thanks for the update.

[MissBoop]

I'm just so boggled by all of this I find myself listening to health shows and reading articles, just hoping for a "lightbulb" moment that may lead you all in the right direction of why she's doing this. Seems like if you don't find the "why" there's just a stand still.

[silentkate]

I'm glad to hear there's some progress.

[mis-informed]

Mi, thanks for keeping us updated. I check this thread every day in hopes of good news. Your little one is so much on my mind!!!

[Tylar_Connar]

Maybe this will get things going in the right direction!!

[Caro]

i keep checking back for news.. maybe progress is being made.. im sure hoping and praying soo!!!

[rootbeer]

Originally Posted by Screamer

ok Monday morning update. April got DGD to play with fruit loops. They were acting silly and DGD licked the fruit loops crumbs off her fingers. Then she cried and screamed but she did indeed got a taste of fruit loops.

and at the same time.

Also she is now able to brush her teeth and rinse her mouth. But does not swallow.

Again and .

One step forward.

The brushing her teeth really gets me though. Of course she is not swallowing but it is getting things into her mouth.

I'll hake that as a big

Mi *almost---> but still --->

Steps in the right direction. I can feel she will be ok

[Stormyskies]

Any new news? Here is something I found on the subject.

http://www.unmc.edu/dept/mmi/index.c...D=29&CONREF=79

[Screamer]

...One they sent as a 'family update'. It says lots more than I could pass on.

K is being seen by a new doctor (a much more mild mannered one, but more persistent) and after looking at her chart and previous reports, the doctor has made a decision to do additional testing just to make sure more bases are covered. The doc has ordered an abdominal ultrasound (being done today at 1:30) to look at K’s pancreas and gall bladder (and maybe some other organs in there too) to make sure that they are growing properly and have no abnormalities. She has also decided to draw another round of blood tests. I’m not going to get into the tests being done since she rattled them off so fast I’d be afraid to give you information that’s not accurate. Some of these tests though will take up to several days to come back with results since they are being sent out of the hospital.

K in general is adjusting rather well in her new environment. She enjoys the interaction with the other kids in the unit and it sounds like she enjoys painting the most. They are implementing a new plan that requires the nurse to work with her once an hour on the sensory reintegration therapy. Things are slowly progressing, and all we can do is just hope that we can bring her home soon. We will try our very best to keep everyone up to date the best.


Mi

Now I'll go back and read that article Stormy!!

[Jai]

Originally Posted by Screamer

Now I find out that the insurance will only pay for 30 days in hosp care. It's been 16 so far.

What will they do throw her away?

Nutz. Just something else to worry about. But that's my job.

Mi

Make sure they check with the hospital to see if they have a program for them. A lot of hospitals have a program that will pay a percentage of the bills after insurance cuts out. I know how stressful worrying about hospital bills is.

[workingmom]

I am praying for you and your family. I am from the Baltimore area and there is a hospital here that may be able to help you. I have attached the web site for you.
www.kennedykrieger.org/kki_cp.jsp?pid=1574

[Screamer]

Thank you Jai. we will need htis information very soon.

Working mom, I just sent this to DS and DDIL.

to you both.

Mi

[chassiepooh]

Thanks so much for having the strength to come in and update us. You all have been on my mind. I've been praying for a positive outcome, and the baby steps sound good.

Sorry to hear about the insurance, but definetly check into any programs that may help too. and continued prayers

[Screamer]

Good Morning everyone. We do not have results of tests done yesterday. As soon as they are available I'll post them.

Cute story:

April and the nurse were talking to K yesterday evening. April points to K's NG tube and asks K why she has that tube in her nose. K looks up at her and puts her hand on her hip and just matter of factly says, "That's so I can get my chocolate milk."

April says, "OK. So what if you just drink your chocolate milk and we just take out the tube in your nose?"

K said, "No thank you."

April has to be very careful what she spells in front of K and the Dr's and nurses can not talk about K's case in front of her. She understand way to much. Even the technical parts.

That's it till I hear from A about the results. Thank you for stopping in to see us.

to all.

Mi

[Stormyskies]

Thanks for the update.

[CarbyCurse]

I just read through and am going to lurk and wait for the happy ending.

There just HAS to be a physical reason for it somewhere. The fact she can tolerate the tube feeding would still seem to point to something about swallowing. If it isn't just trauma from choking or some sort of scare like that, you'd think there would be something they could find.

It's got to be very stressful and frustrating, and I'm sure the ones who suggested scaring her about not eating or force feeding mean well, I just think that would be even more traumatic than whatever is keeping her from eating in the first place.

[Drew]

More ((((HUGS))))) and prayers!

[chassiepooh]

She sounds so darling Thanks for sharing all the stories with us , I was thinking about y'all today, hoping for some ray of sunshine!

More prayers going up

[Screamer]

Good Morning still waiting on results from tests on Monday.

Mi *slightly hopefull*

[Screamer]

Well once again all tests are negative.

*sigh*