Pictures from 2006 Hospital Stay

This is Mackenzie's 2nd stay at a hospital for a cystic fibrosis "tune-up". Her first stay was three years ago (almost to the day - last time she was admitted on July 3, this time we spent July 4th weekend at home and she was admitted on July 6). It was "pre-blog" and I thought I'd post a few pictures from that stay. She was Peyton's age at the time - 8 (about to turn 9) and Peyton was 5.

Maddie and Emily came for a visit:
Morgan visiting (and Peyton):

Peyton and Mackenzie:

Olivia and Mackenzie:

A visit from a therapy dog, Chloe.

Day 6

A day late.

Two of the three things that really brighten Mackenzie's days don't happen on the weekend - mail delivery and physical therapy (which equal roof visits). That was okay because - SHE GOT A PASS! Between noon and evening IVs and treatments she got to leave. It was so hot so we went to the mall for a bit and bought a new pair of PJ shorts (she gets so hot). We also went to eat a non-cafeteria dinner at her choice - Saddle Creek Woodfired Grill (we thought it was a fantastic choice!). Not too much to update, they've moved her next PFT from Monday to Tuesday or Wednesday and that's about it.
We also had visitors today! Mackenzie's Uncle Lance, Aunt Andrea and cousins Lexa and Logan came down to visit. Mackenzie and Lexa:

What can we do to pass the time?

A little fundraising! Great Strides 2009 is fast approaching and we need to get busy raising some funds. Last year - with donations from our friends and friends passing information on to their friends - we surprised Mackenzie by raising as much money as we could while she was away at camp. We raised so much during that time and by the day of the walk, Team Mackenzie raised over $13,000.

She's decided not to go to camp this year because she doesn't want to chance a setback so soon after being out of the hospital. So, we are going to try to see how much we can raise while she is here in the hospital. Please click on this link and donate http://www.cff.org/great_strides/MackenzieJobe any amount is appreciated! Also, if you would like, please write a little something about Mackenzie and pass this link along to your friends that might like to donate.

NWA Great Strides 2009 will be held August 29th. If you are in the area, please join our team (you can do that by following the link above) and come have fun with us that day.

I think we are looking at a two week stay but we will know more Monday after her next PFT. Mackenzie's 12th birthday is July 21st and I hope we are home in time to celebrate!

Day 5

More of the same - treatments, meds, food...

And, some of her favorites - roof, mail and visitors!!

She gained another pound but really no other changes to report.

She was in great spirits knowing her grandparents were coming to visit and bringing Peyton. And of course mail, packages, e-mails, and going to the roof always cheer her up!
Peyton took a rest with Jason in Mackenzie's bed (when Mackenzie is unattached from the IV pole she tries to be up and about in the room as much as possible) and almost got mistaken for Mackenzie. Twice. We told her she better watch out before she gets poked and prodded!

I was so sad to see Peyton go again. She is heading back to Kendall's house but tonight our dog Eddie is going to join her. Mackenzie will have more visitors tomorrow, a great thing since there is no physical therapy on the roof on the weekends.

More Day Four

As soon as I posted the doctor came in so in addition the the post below, they are putting her on Flovent and increasing her albuterol puffs to 4 (from 2). Repeating PFT on Monday. Keep the letters coming! She got her first batch today!

Heidi - she is on Pulmozyme, thank you for all the information!

Day Four

The results from the bronchoscopy are that she is just growing what she normally grows - Staph - and something they are still trying to figure out (also grew last Wednesday). So, they took her off the two IV antibiotics she was on and changed to another. She had a Pulmonary Function Test (PFT) today and her numbers were down from last Wednesday, and then back up (but not to what it was on Wednesday) after albuterol. She'll repeat her PFTs in 3-4 more days.

The doctor (fellow) said initially he suspected we were not compliant on her treatments based on initial review. I have to say that hurt - especially knowing how compliant we are. But he said after hearing her cough (more dry) and looking into things that it's something else and we just have to figure out what. One problem that we know we have to address is getting more of the bad stuff out, which she has a hard time doing.

We just got back from the roof where we had a pretty intense game of Horse (followed by an equally intense game of Cow) and played a little hockey. I have to run - she's requesting more crafts so I better go track some down!

Day Three

How do days go by fast and slow at the same time?

Mackenzie gained two pounds - woo hoo - great news - if she can gain about 6 more she'll be in the "green zone". Hopefully we'll have the bronchoscopy results tomorrow.

Thank you for all your comments and e-mails, we read every single one!

Can I please get a "Care Hub" at home? I'm pretty sure Mackenzie could use this little screen (photo below) to guide the next shuttle landing. We love it. It's a remote for the television (including the ability to record shows), movie player (with about 40 movies we can watch at any time) and the Internet. She can also click to watch what's going on in the parking lot and various places around the hospital campus from the cameras, play games and order games for the Xbox. She can also use it to chat with other patients (we haven't done that yet) and probably a hundred other things that we haven't figured out yet.
There was a hospital wide Bingo game today. For the kids that can't go down to the room to play, they televise it and if you get a Bingo you call a number. It was fun. Mackenzie got her bingo and called - we could hear them talking to her on television and they announced her name and all the kids in the room cheered. Later a volunteer brought her a prize.

We also did a lot of crafting today. A LOT. Sand art is the latest fashion craze for a IV pole near you.I've always said that there are positive things to come out of Mackenzie having CF and I have to add another thing to my list - the amazing support of the CF community. I've had so many CF patients and parents keeping up with Mackenzie, giving us tips and being wonderful examples to us. I appreciate it.

Peyton went to stay with a friend today and I miss her. I know she's missing us too but I know she's having fun. Jason and I will both get to stay in the room overnight with Mackenzie and I know she loves it when we both can be here with her.

I will update again tomorrow!

Day Two

Mackenzie has been looking forward to getting to play on the roof since she found out she had to go to the hospital! We were afraid it wasn't going to happen today because when the Physical Therapist came we were waiting to go down for her Bronch and she was on IVs in preparation (not too much fun to be on the roof attached to a pole). After Bronch, food (finally!) and a breathing treatment she got to head up. It really is a fun thing to do:
Last night after Jason and Peyton left, Mackenzie wanted to make Peyton something special since Mackenzie was getting so much attention. She made her a friendship bookmark (like a friendship bracelet). I'm staying at the hotel with Peyton tonight and since we'll be staying until Friday at the minimum, Peyton is going to a friend's house tomorrow to stay for a couple of days. I'm going to miss her and can't wait until we are all together at home again.

So, between now and when we get the results from the Bronchoscopy (Friday?) it's extra breathing treatments, IVs and food, food, food to get her weight back in a safe zone. 7am-7pm she can order room service - anything she wants off the menu, anytime. That is very nice.

Bronch Update

Mackenzie is back in the room after having her Bronch. She is still very tired and resting. With the PICC line, the anesthesia kicked in VERY quickly and she told us we were going to have ice cream tomorrow. She wants Andy's. They said she did great and I am hoping for clear results to plan an aggressive treatment to get her back on track. I'll post again tonight.

Day One

I think we made it about 11:30am or noon today and we didn't have to wait too long for them to take her to get her PICC line in. It was a good thing - if it were too long, I think her nerves would have gotten the best of her. She did GREAT! What a difference three years has made.

I wish I could keep up with all the different doctors and who exactly they are - Residents, Fellows, etc. (if they would wear a name tag with a picture of their television doctor counterpart that would help - "oh, so he's a George" - ha! )

I definitely remember the Pulmonologist. My heart was down in my stomach after she came in...they want to do a bronchoscopy tomorrow to really try to find out what is going on. She feels that the progression of the lung disease as shown on the x-rays is greater than what it should be based on her age and the bugs she has always cultured. So, please keep her in your prayers that the procedure (including the anesthesia) goes well and that they find what they need to get this under control to slow down the progression of the damage to her lungs.

We'll be waiting to see what grows after the bronch so we are for sure here until Friday. Due to the nature of CF, Mackenzie is confined to her room and mail time is a highlight of her day, so if you have a chance to drop her a letter she would love it. The address is:

Arkansas Children's Hospital
Attn: Mackenzie Jobe, 4B-08
1 Children's Way
Little Rock, AR 72202

We had a few visitors today. Laine, her dance teacher, is here with her son Leighton and Ginger and Jessica happened to both be in town (from Alma and NYC).

I can't access Facebook or Twitter from the hospital so this will be the best way for me to update, hopefully I'll do it again tomorrow.

A few pictures...
Waiting in Admissions:
PICC line time, before we had to leave her (seriously, how much do I love this girl and her big smile and amazing attitude?):Peyton taking good care of Warren (named after Dr. Warren, Mackenzie got it as a gift the last time she was here):

A picture of the room we were in when we first arrived, notice the "snugness" (is that a word?):

And a picture of the room that opened up (THANK GOODNESS!) with a little more legroom.

I will say that it was a little less worrisome coming down for our second for our second hospital stay because we knew how great all the ACH caregivers are and they confirmed it again today...they are wonderful!

July 4th and Friends

What a GREAT fireworks show - just some of the amazing entertainment:
Happy birthday to all our friends that were 4th of July babies, including Emily! (bottom row, far right)

Can you believe the kids above, were these kids five years ago?It makes me want to cry!

What a great weekend! Nothing like knowing you'll be spending some time in a hospital to make you really make the most of a few days. Mackenzie tried to get a lot of swimming in since she won't be able to for a while - even when we get to come home, she'll have her PICC line in. She had a few friends over and all the grandparents came to visit.

I love this picture!

(Emily, Morgan, Mackenzie, Maddie & Peyton)

Annual Review Update

They’re admitting Mackenzie to Arkansas Children's Hospital to aggressively treat with IV antibiotics whatever is going on (we'll know more w/ culture results). We plan to enjoy the holiday weekend (including LOTS of swimming since she won't be able to for a while) before taking her down on Monday.

With not feeling well the past few weeks she has not had an appetite and it showed - She dropped to the 15th percentile and we'll be trying to get 3500 calories a day in (the child LOVES food with hardly any calories/fat - WHY?).

She’s in good spirits knowing that the IV antibiotic is something she needs to make her feel better. Thanks to everyone for keeping her in your thoughts and prayers! I’ll keep you updated.

Annual Review

Mackenzie has her annual with Dr. Warren today...I will post later, hopefully with good news!

Father's Day 2009

We had such a nice Father's Day weekend to celebrate a wonderful Daddy! Fish Fry, favorite desserts, his favorite waffles with homemade syrup, homemade cards, family time and lots of hugs and kisses. We even agreed to ride in the Jeep when we ran around today even though it was super hot!

End of the Year Party - Luau Style

After Fun & Field Day yesterday, Peyton's class had their end of the year party - a Luau. Complete with fruit kabobs, hula dancing, and limbo.
Peyton got a little sad during the party thinking about not being with her friends next year but I reassured her that we will still keep in touch and they'll still be able to get together.

Fun & Field Day

Today Peyton had Fun & Field Day (rescheduled from yesterday due to the morning downpour). Her class was won two relay races and were runner up in tug-of-war. They played on the obstacle course, played kickball, volleyball, rode on scooter boards and so much more! Since Mackenzie is already out for summer she went to help out - here she is with Elise, Mason and Morgan at the slide.

And with Jenna, Mason and Alexis at the bounce house. She was cracking me up telling the first graders the rules...you could tell she had been giving the same rules all day.

One more day until both girls are on summer vacation!

A Night at the Drive-In

Where we spent our Saturday night:
The Drive-In!! We try to go at least once a summer and this past weekend there were two family movies in a row (Up and Hannah Montana: The Movie). We always have so much fun!

The girls are playing the game of Life right now and they are making me laugh...Peyton was just jumping up and down yelling "I'm insured" over and over. Mackenzie is married to "Blue Guy" and Peyton is married to "Guy Blue". Two more days of school for Peyton then hopefully we'll have a relaxing summer!

Ardis Larson-Cole Bump In the Road Award

Yesterday was Mackenzie's last day of 6th grade and during the awards assembly, in addition to straight As all year with all Pre-AP classes (have to recognize that, she worked so hard!), she was the recipient of the Ardis Larson-Cole Bump In the Road Award.

Mr. Manes presented the award and I'd like to pull some of what he said to share with you:

"Ardis was a very special person who worked at this school and others for one reason, her students and her teachers. When talking with her about this award before her death, she told me that she wanted to honor students whose road down life took a journey similar to hers. Ardis always said she had bumps in her life that she had to handle in her own way, and go on with her life to make the very best of it. She overcame those bumps with a positive attitude and she always used those bumps to help others. Even when she faced the biggest bump of all at the end of her life, she never changed her positive view or her wonderful smile"

"Today, it is my privilege to recognize a student that Ardis would be very proud of. This year's recipient has had to travel the bumps of life since the day she was born...Even now her daily routine is one of early rise and extra medical attention so that she can have the same opportunities in life that many of us take for granted. But when you see this student you would never come close to guessing that she is dealing with such a life changing obstacle, or what Ardis would call a bump. In the classroom, she stands out as one of those students who is eager to learn, who works hard to maintain that high "A", who has a respectful sense of humor that can brighten any teacher's and students' day, and who can forget to mention that infectious smile that can turn anyone's bad day into a good day. With her friends, she is the one who has everyone's back, and she is also the one her friends love to be close to...This year's recipient does not let her bump in the road slow her down; she goes over her bump in the road each day and comes out shining as a true champion."

"This year we are proud to honor a student, who at first glance, appears to be like all other hard working students. We honor a student who spends two hours a day taking part in treatments to make her as healthy as she can be. We honor a student who each day takes different medications so that her body can undergo what most bodies do normally. We honor a student who visits Arkansas Children' Hospital four times per year to make sure she is overcoming the bumps in her road successfully. We honor a student who battles a bump in the road each and every day of her life, several times throughout the day. She battles this "bump in the road" trying to beat and overcome the fact that experts say her bump in the road has a shortened life expectancy. I have no doubt that she will continue to go over her bumps in the road with grace, and she will overcome any odds her big "bump in the road" give her"

Her name on the plaque at the school:

Mackenzie with her wonderful Team Champions teachers, Miss Mertz, Mrs. Turner, Mrs. Coffee and Mr. Manes.


Oh yes, I cried like a baby - we are so proud of that girl! I can't believe she is off to Junior High next year and we celebrate each passing day, even if they pass too quickly! Spring Hill is an amazing school with wonderful, caring teachers and staff and we are going to miss it so much.

SHMS's Got Talent!

I am so impressed with all the talent I saw this morning from fifth and sixth graders at Mackenzie's talent show. Singers (and singer/songwriters!), dancers, pianists, guitarists, funny emcees and great teachers made it a very entertaining show! I'm going to miss this school so much!

Mackenzie and her friends performed a little dance. Video from dress rehearsal:

May 28, 1905

Peyton had a field trip back in time last Thursday. Ms. Lange and Ms. Cheatham's classes went to the old Rocky Branch Schoolhouse and spent the day learning how a school day was in 1905. They were invited to dress the part so Peyton wore her dance recital costume from last year (I'm not sure it went with 1905 but Peyton was excited to wear it).