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.