Great Strides 2009

This past Saturday, we participated in our 13th Great Strides walk, a fundraiser for the Cystic Fibrosis Foundation. The event raised $75,000! Last year it raised $63,000 and the goal for this year was $68,000. We have such wonderful, supportive friends that join our team and/or donate to Team Mackenzie. Next year, I have a lot of ideas to raise more money leading up to the walk and I am definitely going to do Team Mackenzie t-shirts! Above: Alyssa, Mackenzie, Mason, Emily & Amelia.

Above: Elise, Logan, Meghan, Jenna L., Dejha, Mackenzie, Morgan, Amelia, Alyssa, Jenna K., Emily, and Mason.

Above: Strike, Jenna L., Jenna R., Mackenzie, Morgan, Emily, Meghan, Logan, Peyton, Mason, Amelia, Elise.

Mackenzie & Peyton

Alyssa is on the WJHS yearbook committee and they are looking for pictures of WJHSers doing things in the community.

Ashley & Peyton enjoying some yummy barbeque provided by Red Oak - it was delicious!

After the walk Mackenzie went to Emily's and joined her at her church for their SummerZover celebration - here they are after a long day!

Finger: Set, Wrapped, & Sent to School

I took Mackenzie to the Doctor first thing this morning for her broken finger. For the record - she LAUGHS when she breaks her finger, but when it comes to a shot in her hand, she gets pretty nervous. Thinking about the shot was worse than when she actually got it. No PE, swimming, etc. for a couple of weeks and we go back on September 10th.

Caution: Stuff Great Strides Participant Bags At Your Own Risk

Today we stuffed the participant bags for Saturday's Great Strides walk (and they are GREAT bags!). Here is a picture of the hard workers standing with their finished product:
Here they are a little closer up (Charlotte did a great job of hiding while she was holding Caroline, don't you think?)!

I didn't get to take a lot of time with my photo composition because right before the above pictures were taken, Mackenzie BROKE HER FINGER! Crazy accident, the kids were having a great time playing in the big open space and somehow she broke her little finger. We didn't know what she had done - it looked very crooked but she didn't seem to be in any pain and was laughing!

This angle doesn't show how crooked it looks but I took it right before we went for our x-ray confirmation:

1st Day of School

The girls had a GREAT first day of school yesterday! Peyton loved everything and Mackenzie really enjoyed Jr. High - she said she did feel a little overwhelmed, but she was still so happy about the day.
Mackenzie said we could go in with her but no camera - so here is a picture in the car with Emily. I can't wait to hear how Day 2 went. Mackenzie will meet more teachers today since they are on an A Day/B Day schedule.

New (School) Year's Resolution

The girls are tucked in bed - wide awake, excited about the first day of school tomorrow. They both are starting at new schools, Peyton in 3rd grade and Mackenzie in 7th grade - Junior High! Mackenzie will be in a school with about 1000 students (7th & 8th grade) and I am so nervous (I went to a very small school). I know it's going to be a great year!

So, here is my New (School) Year's Resolution: Every Sunday I will bag up a weeks worth of food for lunches. We did this tonight for the next few days (no, we won't win any sustainability awards but we'll turn off extra lights and recycle and reuse as much as we can in other ways - the convenience will keep me sane). We've done this in the past but never consistently.

I had to take a picture in case it doesn't happen again! Ha. Look at all those colors (that's good, right?). Their lunches for tomorrow are already packed and then they'll replenish their bags afterschool for the next day from these containers. Fruit dip, veggie dip, grapes, cheese, chicken, tomatoes, crackers for Peyton, Doritos for Mackenzie, and Oreos. Juice added in the mornings.

In the past they ate at school quite a bit but we've been told the lunch line for Mackenzie is pretty long and with it being so important for her to eat, she's going to take hers and eat then if she wants to go through the line towards the end and get even more food she can. If you pack one it's easy to pack another so Peyton will take hers this week too.

I'm going to go get a little laundry done and then go to bed (where I'm sure I won't be able to sleep either). I'll post 1st day of school pictures tomorrow.

Back to Everything Week

Last night Peyton had Open House at her new school. She met her teacher Mrs. Phelps and we walked around CPE. We loved Mrs. Phelps and we all have a great feeling and think this is going to be a fantastic year!
After Open House, the girls had their first night of dance. Peyton had ballet:

Mackenzie had Jazz and Hip Hop (here she is with Samantha):

Tomorrow is the first day of school. Today we are going to go walk every aisle of Walmart to figure out something for lunches. I hope the day goes by very slowly - I'm sad to see the girls go back. I'm going to miss them. They on the other hand, seem to be very excited to start and I guess it will be nice to get back into a routine.

NEW POSTS!

Can you believe it!? My friend Kendra had the first line of the July 20th post memorized it was up for so long. We've just been trying to get back into the groove of things. We had company for a couple of weeks and as soon as they left we started getting ready for school. I knew I had to post today because we'll have a lot of back to school posts this week. So, I'm going to cheat a little bit - in addition to the 4 posts below, Sheila posted about their visit with us here. The girls start school on Wednesday and hopefully we'll be back in a routine...I've missed catching up with all of my fellow bloggers too!

3rd Time's the Charm

Monday I took Mackenzie to get her locker for JUNIOR HIGH. Ugh. The first locker she got was a top locker - great for most people but she was going to have a hard time with the combination lock being above her head! They let us trade for this one:
We took a little self guided tour of the school and found that there was a group of 7th grade lockers near the back entrance to the nurses office and thought that would be a good place for her to be, so she changed to this one:

Red Carpet Party

Peyton helped her friend Ashlyn celebrate her 8th birthday on August 7 and had such a fun time! First a limo picked them up from school (I had to take Peyton to meet them since she isn't going to that school anymore) and took them around town, then it delivered them to walk the red carpet at a hotel where they went swimming.
I love this picture of them in the limo - can you see the joy on Peyton's face?!

New Neighbors

These are our new neighbors. A family of 5 racoons (but you can only see four in this picture). They've grown a lot since this picture was taken a couple of weeks ago!

Child Labor

Jason has been working so hard on getting the yard cleaned up and ready for grass and plants. While our guests from Ohio were here, he had a little extra help. Rachel and Peyton decided to help and they worked almost all day, very hard - picking up rocks, rocks, and more rocks.

They only took a little break and were very cute trying to figure up their day's wages. I think Jason gave them a tip because they got more than the going rate per bucket of rocks!

There's No Place Like Home

Truly - I am so happy to be home with my family under one roof!

The morning started with PFTs at 9am. They were up from Friday! 78% Pre and 82% Post. Weight was still the same. After the test we went back to the room and waited. We already had one load packed into the car. Right when Nurse Heather came in to start her noon IVs, Dr. Broussard came in to take out her PICC and RT Pam came into do her treatment. So, no IVs, out with the PICC and a treatment for the road. Mackenzie barely had her vest off before she had her shoes and mask on and was ready to go. Of course, we still had paperwork and the rest of our things to load into the wagon. We hit the road about 1:30pm.

It was rainy outside but sunny inside! The entire way home she kept giggling, had a huge smile and was so excited to be going home
Remember that bridge I said I couldn't wait to be on, I took this picture when we were driving across it!! Here is the view of the Big Dam Bridge going home!

Goodbye ACH! Hello Home!

The Adairs and the Hanlons (and Peyton and Eddie) were waiting for us! They were on the porch, in the pouring rain waving us home. I could kick myself that I didn't get a picture of Mackenzie with them all!

Now I have to go do a little decorating for Mackenzie's birthday tomorrow...Oh, it is good to be home!

Day 14

I've been meaning to post this all week!! Mackenzie's Pulmonologist - Dr. Warren - who you all know we love so much, was awarded the Ruth Olive Beall Award here at ACH. Please click to read all about it!! Such a well deserved award.

No change again today on anything. PFT in the morning and hopefully home soon afterwards.

I love the Respiratory Therapists here (along with pretty much everyone else)...we had three come by just to tell her goodbye since they didn't have her today and wouldn't see her before she left.

We decided we might as well use a pass again today since the weather was beautiful. We went to the Arkansas Historic Museum and went on a tour of some of the historic houses. This picture is of Mackenzie and our tour guide. He was a patient at ACH, he worked here for 23 years and he wrote the book on the history of ACH (I'm going to look for this book in the gift shop tomorrow). Afterwards we decided to head over to the Big Dam Bridge. The Big Dam Bridge is the longest bridge in the United States that was built for pedestrian traffic. Here is their website with more information, photos and the answer to how it got that name!

I was regretting not bringing my camera when we were here! It's just not the same on my phone camera! This is the view looking to the East.

And the view looking towards the West. I can not wait to go across that bridge you see in the distance tomorrow!

I'll post tomorrow from H-O-M-E! Hooray! I hope I haven't jinxed it by packing!

Day 13

Yesterday, Saturday - Really no updates to give. Not even a weight check. We got a pass and arranged to have IVs and treatments a little earlier so we could enjoy the farmer's market at the River Market - it was a beautiful day and we made it back to the park. My friend Renee came to visit Mackenzie and took Peyton home to be with Sheila and family at our house. We can't wait to join them tomorrow!

Day 12

As I posted earlier, we are here for the two week duration...PFTs weren't what we wanted (possibly due to the Hypertonic Saline which has been discontinued) so we are here until Monday. Monday morning they will repeat the PFTs and we'll head home afterwards. There was no change in her weight today (Katey - she is 4' 9", I'm only 4' 11.5" so fingers crossed she surpasses me!).

We pass under this everyday to go around the corner and head up in the elevators - "Fear not illness...this place of care, love and hope is for you." What a wonderful thing for patients and families at ACH to read. Even better, a wonderful thing to experience.
This is Dr. Blaine, he is our alarm clock:

Here she is waiting to take her PFT today:

Tomorrow the weather is going to be beautiful so we are planning to ask for a pass - especially without getting to go on the roof during the weekends - and go back to the park.

Here Until Monday

Mackenzie's PFTs weren't what they were hoping today (FEV1 was 75% up from her last pre of 74% but down from the 81%). They are taking her off the Hypertonic Saline which has seemed to increase her cough - irratating/dry not productive. I will post again tonight.

Day 11

Another great day today. She gained a half pound and is up to 78.5 - we are aiming for 82. Peyton arrived at 9am and the day was filled with all of Mackenzie's favorite hospital things. Visitors, going to the roof, a pass, and mail. We went out and about with the girls between noon and 6pm IVs and treatments (they are nice enough to let her do her third treatment a little later when we go on a pass).

When we got back, there was a stack of mail - I love reading every single thing you all mail, e-mail, text, comment, etc. You all lift our spirits so much and I can't tell you how much I appreciate it. I have to admit one day last week I had a very down day because I started thinking about the "what if's" of this horrible disease. I sometimes wonder if our positive attitude sometimes takes away from how others might view the seriousness of cystic fibrosis, especially from the standpoint of what other families dealing with cf are going through or the work Mackenzie does to stay as healthy as she can. There are families that travel a very different cf road and some that travel a very similar one to ours but without the support we have that makes all the difference. Just being here at ACH where there are families that lose their children, that have to stay much longer than we do, and that are dealing with problems that are much worse than ours - I think more than anything I hope for each of them is that they could have the support system that we have, friends and family and other amazing cf families that say prayers, write letters, lend a shoulder and an ear and do all the things you all do for us. Please know it means everything to us and is a huge part of the reason why we remain positive, hopeful, and brave enough to fight and beat CF.

So, you want to see a few pictures from the day?

We went to the Museum of Discovery which was okay. I know they are soon adding on and I think they have a lot of room for improvement - just in comparison to some of the other museums we've been to that are similar. The girls did have fun and that is what matters!
After the museum we did a little repeat of some of the things we did when Mackenzie was on a pass in 2006 but this time Peyton got to participate. Trolley ride and Peabody Duck March...

Peyton wanted to go sit on (her words) the "freakishly large couch" at The Peabody...We had a few extra minutes before we had to head back and stopped at the Peabody Park at LR's Riverfront Park. It was AMAZING! I wish we had a park just like it. These pictures do not do it justice! Unfortunately we couldn't play in the water because of the PICC line but Mackenzie and Peyton still had a great time.

Here are some pictures from the LR Parks and Recreation website.

Now I have to run to hug on Peyton and Jason before they go sleep at Dana and Blu Coburn's for the night. Dana and Blu are friends of Jason's brother Lance and his wife Andrea and they are so generous to open their home to us so we don't have the hotel expense and so Peyton can be down with us for a few days!