Disney World Here We Come.

Yeah!!! Katie's wish grantors brought our itinerary for our trip and gifts for Katie and Megan. We are all so excited

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.

Update for Friday 9/18/09

Yeah!!!! We are finally out of ICU. Katie slept most of the night(Thursday night). She would wake up every 2 hours saying her stomach hurt and they would get the morphine. It worked almosted immediately all but one time. They had to add a little tylenol that time. She slept most of the day too. Around 2 pm they let her have clear liquids. She drank a juice box but threw it back up. She was able to try again around 5 pm and she kept it down. They moved us to a general pediatrics floor at 6 pm. We are now in room B4-310. When we got down here, they put her on a regular diet and she was able to eat yogurt, strawberries, and eggs. Hopefully, it all stays down. Through out the day they have taking out one IV line, a foley catheter, and all her monitoring patches. If she keeps all the food down tonight they will remove the NG-tube in the morning. Thank you again for all the thoughts and prayers.

Update on Katie's Surgery

Katie did great in her surgery. We were admitted last night around 6pm. They put in an IV to give her IV antibiotics and gave her a Hibicleanse bath to get her extra clean. We finally passed out around 11:30 pm but were up again at 5:30 am for another bath. We had to wait to go to surgery until 1:30pm because an ICU trauma patient needed to get the same procedure done first. Katie's surgery started about 2:24 pm and was done before 3:30 pm. Everything went really well. The doctor said that she blocked off the arteries to about 2/3 of Katie's spleen. After surgery, they took Katie to recovery until about 6:15 pm. We finally got up to ICU around 6:30 pm. She is in room C12-256 for now. Hopefully, everything keeps going well and she will be transferred to a general pediatrics floor within 24 hours. I will send out more updates as I can. Thanks for all the thoughts and prayers.

Katie did great at the CT

Katie was so awesome today for the CT. She did such a good job when the nurse was putting in the IV that they thought she could do the CT without sedation. Leah was able to stay with her during the CT. Katie didn't even cry once. What a big girl!!!

Katie's Question

Katie told Leah her tummy hurt and Leah told her that she was sorry. Then Katie asked Leah, "Why did Andrew die?" Leah said, "Because he was sick." Then Katie said, "I know, but why did he go to God?" So Leah said, "He had a disease called Niemann-pick and his body stopped working." Leah then asked her, "Why did you want to know?" Katie said, "She just wanted to know what happened."

Surgery set for Thursday September 17th

We spoke with Katie's Palliative Care doctor today. We have scheduled a CT with contrast of Katie's belly for Tuesday, Sept. 8th. The are doing it so they can map the blood flow to the spleen. We also checked with her pediatrician and found out that Katie already had the Pneumovax vaccine. The plan right now is for Katie to be admitted Wednesday, Sept. 16th. They want to do a betadine scrub of her body and start her on IV antibiotics. The procedure will be done in radiology with guided CT. We were also able to speak with the radiologist which will do the procedure. She said the material that they use, to clot the arteries leading to the spleen, are made out of the same material as contact lenses. This was something I was worried about, because when they said it was a coil, I had imagined a piece of metal. She said the procedure should last 2-4 hrs. Katie will be completely out under general anesthesia. She will be intubated(breathing tube) during the procedure and afterward the procedure until her pain is under control. She will go straight to ICU and will stay until the pain is under control and the tube is taken out. Please keep us in your thoughts and prayers.

We need your prayers.

We need everyone's prayers. We are meeting today with Katie's Palliative Care doctor to discuss the partial splenic embolyzation procedure. Right now they are saying that Katie needs the Pnemococcal vacine, at lease a week before the procedure; and a CT with contrast to map the blood flow to the spleen. They said that they will want to admit her the day before the procedure to do a full body scrub and IV antibiotics and that afterwards she will go to ICU for observation. They also said earlier that she could get to go home the same day, but that was before they decided to admit her. Please pray for us and the doctors to make the best decisions for Katie and to guide their hands during any procedures and for a fast recovery for Katie.

First day at School

Katie's first day at school went well. She was very nervous and crying when we left, but she had a great day at school. The only problem she had was with the school bus. She said that a little boy fell asleep on her arm and another boy wouldn't stop screaming and it gave her a head ache. Luckily, the next day she was smiling and laughing when Nana took her off the bus. I dropped her off at school today and she was much better, only a few sniffles. I was so proud of her.

Update on possible procedure for Katie

I spoke with Katie's Palliative Care doctor yesterday. He said that he had spoken with 2 radiologist at Children's about the splenic embolyzation and both agreed that a partial splenic embolyzation is the way to go. In this procedure they only stop the blood flow to part of the spleen so that part dies and is reabsorbed. The radiologist then called me and talked me through the procedure. It would be done at the hospital in radiology, taking about 2 hours. She said that she would need to stay flat between 4-8 hours after the procedure but that if everything went well she would go home the same day. Basically, we just need to make the decision to do the procedure and let them know when we are available.

No Splenic embolyzation for Katie, looks like surgery instead

The doctor called today and said the Radiologist felt that a splenic embolyzation was too risky and too painful. The next step will be to see a pediatric surgeon and make a decision removing the spleen through surgery.

Katie wants Andrew and Rebecca

Out of no where, Katie told us last night that she wants Andrew. Leah and I looked at each other then asked Katie what she had said, to make sure that was what she said. She said I want Andrew and Rebecca.

She has said this a couple times before. The biggest tear jerker moment we've had is when she told us, "I want God." Leah asked her, "Why do you want God?" Katie said, "Because I can't walk and he will make me better."

Katie's behavior

In the last couple of weeks, Katie has been having these breakdown episodes where she just starts crying or screaming. She won't tell us if anything hurts or what happened though. All she will say is she does not want to talk about it and if you ask her about it she gets very upset again. The other day we were swimming in the pool and I was holding Katie and she just started screaming and crying. She wanted me to give her to mommy and she would not let me look at her or talk to her. She acted like I had done something to hurt her but nothing had happened. She kept telling me to go to the deep end of the pool, which is very weird for Katie, because most of the time she only wants me to hold her in the pool.

Katie visits her Neurologist today

We took Katie to see her Neurologist today. He was concerned about the size of her spleen because now that she is more unstable she could fall and rupture the spleen. That would be very bad. He is going to speak with the radiologist at Harris about doing a spleenic embolyzation to reduce the size of the spleen. He said that if it is done there, the Cook's Anesthesia department will do the anesthesia. He also felt that with the spleen the size it is, no surgeon would do a G-tube. I know were not there yet, but those are two things that you don't want to have to do together.

He also recommended starting her on Neurontin for neuropathy in her hands and feet. Neuropathy is when the nerves start dying and it can cause pain and a pins and needle feeling. I've noticed that she has been holding her hands together and constantly rubbing them. This is the same thing Andrew did when he started having Neuropathy. The next thing Andrew started was chewing on his hands and pinching them.

Katie did great at the appointment except when Chuckie Cheese showed up in the waiting room handing out bears and chuckie dolls. She is scared to death of Chuckie Cheese when he is walking around in the costum.

P.S. If anyone has comments our questions please feel free to post them.

Happy Birthday Katie!!!

Happy 4th Birthday Katie!!! We love you very much.

Tough night for Katie

Katie has a very enlarged spleen due to NPC. She has been telling us her stomach hurts more and more. Occasionally, she gets to the point where we think she has a small bowel obstruction because of the spleen and she starts to throw up. Tonight has been one of those nights. Hopefully, it works itself out and she will feel better tomorrow.

Make-a-Wish granters came to see me today!!!

We had an exciting day today! Katie's wish granters came to see her to ask her what her wish was. Clint and Kim were very nice. They brought Katie an iCarly purse and Megan a Hannah Montana set of pencils and folders and notebooks. When Kim asked her what her wish was she said "I don't know" so I told Kim that Katie had told us earlier that she wanted to go to Disney World. We are hoping it will be some time in December when my semester ends but we have to figure out two more dates that might work it case December doesn't.

We also went to the circus today. Katie just kept saying she wanted to go home the whole time and finally fell asleep in my arms during intermission while waiting in the long line to the women's restroom and stayed asleep through the whole second half.

She has been complaining a lot that her head and stomach hurts. We were scheduled to have an exam with her neurologist this Wednesday but he has to reschedule so maybe I will take her to the pediatrician first.

ARD Meeting

We had Katie's ARD meeting earlier this week and found out she will be in a blended class. This is a class that is half special needs and half not-special needs. We also meet her teacher and we are both very excited for Katie.

Make-a-Wish approved Katie!!

We got the letter today. So now we have find out what Katie wants to do for her wish.

New Blog for Katie

Thad and I have decided to start a blog for Katie. As Katie progresses more in her disease, Niemann-Pick Type C ( NPC ), we are wanting to keep our friends and family informed on what's happening in her everyday life and to also have a record of all the cute things she says and does.

So here it goes...

For those of you who don't know, Katie has a rare genetic disease called NPC. Our son Andrew died from the same disease 4 years ago, he was 9 years old. Katie is doing really well. Our main concerns right now are her enlarged spleen and she's started to fall down a lot more.

Today we had an appointment with the mobility clinic at Children's Medical Center of Dallas. We are getting Katie a special needs stroller that tilts and collapses for easy storage in the car. She is also getting a car seat that will help support her head. We are also getting a blue rifton walker that we can strap her in so she won't fall. Also a bath chair that will make it easier to get her in and out of the bathtub ( for later). She is very excited about her new equipment and so are we.