Thanksgiving 2009

Why did this past week go by so quickly?
I'm sad the girls are heading back to school tomorrow, I enjoyed having them home. This past week was a bit of a blur, a little family, a little decorating and a lot of science fair project. Three more weeks before they are out for Christmas vacation.

Update on M's meds - both of the new additions seem to be working! Hooray! Much less coughing and much more appetite - usually around 9pm.

ACH Appointment

This week (and every week) I am thankful for knowledgeable doctors, helpful medications, CF medical advancements, fellow CFers and CF families that provide information and set wonderful examples, and supportive friends and family!

Mackenzie had a FANTASTIC visit with Dr. Warren and the ENT, Dr. Richter, yesterday. We were nervous going down because there was the possibility of an admission with her recent weight loss. We scheduled this appointment last week because Mackenzie had lost about 5-7 pounds and she had been coughing all through the night (but seemed to feel great during the day). They put her on an antibiotic and inhaled Fortaz and scheduled us to come in yesterday. We were also able to get an appointment with the ENT for help figuring out these sinus issues Mackenzie's been having (we thought they were allergy related but her recent allergy skin test showed that she wasn't allergic to anything).

First off, Mackenzie got finally got her flu shots!Her Pulmonary Function Test showed numbers closer to what we were seeing when we left the hospital in July (and those were better than they'd been in a very long time). Lungs sounded very clear and we'll get the results from the culture soon. They put her on an appetite stimulator to keep her hungry more frequently and hopefully she'll be putting her weight plus some back on soon.

On to the ENT. Her sinuses LOOKED good but we still have all the symptoms we deal with at home...we went over what our concerns and what her symptoms are and Dr. Richter asked a few questions then said we were going to think he was crazy but that her sinus issues were being caused by reflux! Including the coughing through the night and in the morning. She's already on reflux type meds to help her enzymes work better but now we'll add another at night to help and I can't wait to see if it helps.

Girls On The Run

Saturday morning started off early with Peyton's first 5k. She finished in 31:35 and we are so proud of her and glad she was able to participate in such a wonderful program.

With her running buddy (and Daddy) Jason:
Allison, Peyton & Ashley:

A little face painting:

And what run look is complete without a little extra color in your hair and a fun hair accessory?

Peyton with Ashley:

Taking off...can you find Jason and Peyton?

The run went around the square:

After the run:

Anna & Peyton:

Birthday girl Avery & Peyton:

Central Park girls:

Jada, Sydney, Peyton, Molly & Avery:

Peyton & Molly:

Sydney & Peyton:Mackenzie missed out on the run but she was at a sleepover. I helped take the girls to the movie and we all went to see New Moon.

Mackenzie decorated this cake during the party:

It was a busy fun day and last night Jason and had a date...dinner and a movie - The Blind Side, great movie!

This morning catching up on facebook I saw the wonderful news that Natalia got her lungs yesterday...I missed the original post which has since been taken down so if anyone has more information, please let me know.

Today we are resting up so tomorrow we can get up at 4am to take Mackenzie to ACH. I called last week hoping to see Dr. Warren - Mackenzie's been coughing more at night and has lost some weight (they'll consider an admission with the weight loss but I am hoping that won't be the case, she seems to be feeling great otherwise and we can work on getting the weight up at home). We'll also be seeing an ENT since her allergy skin test showed she is allergic to NOTHING, yet there definitely seems to be something going on with her sinuses. They put her on inhaled Fortaz since she grew psuedomonas again in September and it was resistant to TOBI. I think I've finally gotten the hang of mixing it.

I hope everyone is having a great weekend!

Halloween 2009

7 weeks of being sick + 3 weeks of playing catch up + 1+ month of no posting = 5 posts in one day + a million pictures + zero (or very little) words. I think this will be my last one for the day and I'm going to try to keep up for the next little bit.

After we got home from the trails (previous post) the girls got ready for a fun Halloween night. Here they are with Tinkerbell Bella:
With Yoda Logan and Tinkerbell Lexa:

With K-State football player and cheerleaders Andrew and Kendall:

Morgan and Mackenzie:

Cowgers, Freehlings, Ashton and Jobes:

On to the party at Maddie's:

Peyton and Mary Grace:

Group Shot:

On the trailer to go trick or treating:

Rocktoberfest

Every year, Jason takes his Jeep and goes to Rocktoberfest for a few days. This year he wanted us to join him on the trails for a day - I don't even like going over the curb so you can imagine my feelings toward joining him. Then it rained and the campsite he stays at flooded so he came home early (thankfully he did come home, some people stayed and had to be rescued). I thought that would mean I would get out of the trail ride. No such luck. He wanted to go back and we went with him. Remember what I said about the curbs - I took these pictures while we were parked in the middle of this creek:

There were a few times that I wanted to get out of the Jeep but I kept a smile on my face and we had a great day together.

Fall Party

On October 30, Peyton had her fall party at school. Here she is participating in the Candy Corn Relay Race:
Getting her food (check out Angela's cute cheese tray):

Group shot:

Peyton with Molly and Sydney:

And, with Mrs. Phelps:

Monsters in the Closet

On October 23 - Peyton's 9th birthday! - the third graders had a field trip to BHS to watch their production of Monsters in the Closet.

I Have A Dream

Peyton's third grade musical was held on October 22. Here she is getting ready for her speaking part:

CF Clinic Checkup

4th post of the day - I don't like getting so behind on the blog where I have to post several things at the same time!

On Wednesday I took Mackenzie to her CF Clinic visit (Jason was out of town). She had a very good check up. Great weight gain, clear sounding lungs and she was so excited to tell Dr. Warren that she's running Cross Country. Her PFTs were down BUT her allergies are bad - so, is this the cause?? We have finally scheduled her allergy skin test for Monday, October 12 so I hope we finally get this figured out. I'll hear from Dr. Warren this week to see what her culture results are and if she needs an antibiotic.

I know several of you fellow CF families are familiar with the Power of Two. I was not until I received a message from a friend from elementary school (facebook really is amazing!).

From Laura on September 20:
My boyfriend, Nickolas Rossi, is a cinematographer. He is going to Japan on October 1st to shoot a documentary about twins with cystic fibrosis. They both have had double lung transplants in the US but are from Japan, and knowing you, and your research, you probably have heard of them? Below you will find the website. They are going to Japan to ask Japanese officials to allow transplants as it is not readily available there. My boyfriend will be shooting everything. The women live in San Francisco now and on Sunday they will document them getting ready for Japan, talking about the medication they have to bring with them. I would love you to be facebook friends with Nickolas as he travels through Japan with these ladies, as he documents. Perhaps you could help spread the word. This film will premier at SUNDANCE. You and your family are a bright figure in all of this and I want to make sure that the word is spread the right way, which you do well. The website is http://www.thepoweroftwomovie.com/the-book/ Check it out and let me know your thoughts!Love,
Laura

She sent this on September 20 and I wish I would have shared it sooner! Please, check out the website and follow them on Facebook and Twitter.

Sunday, September 27

When Jason was busy working in the yard and Mackenzie was at her youth church group, Peyton and I went with her class to see "Cloudy with a Chance of Meatballs". Mrs. Phelps organized the outing and the class is going to compare and contrast the book to the movie (love this!). Sydney, Peyton & Molly:

Peyton with Mrs. Phelps:

Saturday, September 26

Last Saturday was pretty busy - as is everyday lately (reason for my lack of blogging!). Mackenzie and I started the morning with a movie. The girl's dance studio had a fundraiser and we all went to see Fame. Peyton had a soccer game and didn't get to join us.

I found it to be hard taking a picture in a dark theatre. Tatum, Emily, Maddie, Mackenzie & Rachel: Peyton got to have some fun too - she went to Molly's party at Justice and she turned into a little rocker. Oh my.

To finish the day, the Urhahn's had a group over before cotillion for pizza and games.