Katie had another funny thing to say yesterday

Leah was leaving to go take a test at work and Katie threw her usual screaming tantrum because she wanted her mommy. After she had screamed for 30 minutes, she finally calmed down enough so that we could talk. I asked her if she will ever love me like her mommy. And she said, "No because you are more hairy and less lovable."

Niemann-Pick was on this week's episode of "Castle" on ABC

Hello NNPDF Families and Friends,

I have received a couple of calls and contacts at the Central Offices this morning indicating that viewers of the ABC television program ~ Castle ~ were surprised to learn that Niemann-Pick Disease was worked into the program script on last evenings program.

You may watch the program in its entirely via their web site link at:
http://abc.go.com/shows/castle/episode-guide
The program episode is titled: When the Bough Breaks

It is especially poignant that this mention was made during October as NPD Awareness month ~ when education and awareness into NPD play such a key role for all of our families and children affected by NPD.

Thanks for the updates and happy viewing.
Nadine

Nadine M. Hill
Director of Family Services
National Niemann-Pick Disease Foundation, Inc.
401 Madison Avenue, Suite B; PO Box 49
Fort Atkinson, WI 53538-0049
Phone: 920-563-0930
Fax: 920-563-0931
E-mail: nhill@nnpdf.org
Web site: www.nnpdf.org

Katie didn't cry today when I dropped her off

I was so proud of Katie today. She didn't even cry when I dropped her off at school. She took her back pack and went and hung it up on her own.

Katie is a funny girl

We've been working with Katie on not crying when I drop her off at school. She usually stops crying pretty quick. I've been having her count how many people say hi to her as we come in the school. I told her how Andrew use to say "Hello" to everyone and if they didn't say anything back he would say, "I said Hello". So far nothing has worked. Tonight, I asked Katie what we could do to make her not cry about going to school. She said "Milk and five dollars".

Update on Katie 10/05/09

Katie has been back to school now almost 2 weeks. She is doing really good. I asked her yesterday if how her stomach felt and she said, "No Pain." I asked her if it felt better than before the surgery and she said yes. Her stomach is still big, but it does look smaller along her waist line.

Yeah!!! Were Home

They discharged Katie today. We had to stay an extra day because Katie got a fever Friday night. They did labs, an x-ray, and blood cultures and everything came back clear so we finally got to come home on Sunday. Katie was so happy. She finally got her coffee from Starbucks. She did so great and we are really glad to be home. Thanks to everyone who helped during our stay and thanks to everyone that prayed and thought about us. It made a huge difference.

Update for morning of 9/19/09

Katie kept all her food down last night. She did get a fever of 101.9 around 11 pm, but with some Tylenol it went away. The doctors were a little concerned because they didn't know what caused the fever, so it looks like she will be in at least the rest of today. They also clamped the NG-tube and if she does not throw up anymore they will remove it. Papa came up to see her last night and it made her day. He brought her a rainbow slinky and let her play with his laser pointer. She kept shooting at the nurse and tech. Hopefully the fever doesn't come back today and she gets to come home tonight.