Melts our hearts and our ice cream.

Super fun day for our Rosebud CF Superheroes!  We were able to deliver some super-sized checks to the Reaching Out Foundation and the Cystic Fibrosis Foundation!!!

First we met Susan Burroughs, the founder of the Reaching Out Foundation.  She helps local CF families that are struggling financially.  Some months there are CF families that have to decide if they will spend their money this month on groceries for their family or CF meds.  Susan is there to help so they don't HAVE to make that choice but can instead afford both.  The ROF is such an important part of our Georgia CF community.

Next we met with the Cystic Fibrosis Foundation that helps fund research on a national level.  Their funding of research has resulted in several of Elena's current meds that keep the difficulties of life with Cystic Fibrosis at bay.

We were treated to ice cream on this hot July day!  The kids really liked this day.  Lunch out...ice cream...and zip lock baggies of gummy bears to take home.  Made for a wild afternoon!

The Rosebuds are so thrilled to be a part of making the world a better place through their involvement with Miles for CF.  Our teams 65ROSES (Super Adults) and Rosebuds (Kiddo CF Superheroes) are quite a dynamic duo!  Thank you to the people behind these organizations that are truly making a difference in the lives of those with Cystic Fibrosis.  We are thankful for EACH of you and your dedication to adding tomorrows to those living with CF!  You simply melt our hearts!

Oh NUTS!

Elena had her follow up with Dr. McKean today and this is what we learned:

-She has edema in her lower left lung.

-Her lung function is still down and Dr. McKean has decided to call it.  She has a new normal which is unfortunately low.  That is not news a CFer wants to hear.  That was the only bad news we got today!

-Fungal and bacteria free according to the bronchoscopy results!!! NO Pseudomonas!!

-We have one outstanding test we are awaiting results for that we should have before the end of July.  It is a TB like test.

-She is NOT allergic to peanuts, Brazil nuts, coconuts, or pecans. However she IS allergic to almonds, cashews, sesame seeds, pistachios, and hazelnuts.  We have added that to the list with soy and dust mites allergies.

OUCH!

-The upside...she can eat all the boiled peanuts and candied pecans she desires!

We will continue 3 a day treatments in hopes that we can get an improved lung function at her appointment in 6 weeks back at this office and prove this low "new normal" WRONG!

To celebrate, we went to IKEA...wait, what?  Yes, I took 4 kids into IKEA. It sounds like punishment but it was fun because it was a giant building full of rooms to play house in!  We were on a mission to find a cart for Elena's vest and nebulizer.  We found it!  We brought it home and Elena put it together herself.  Now she can move from room to room with ease to do her treatment where ever she pleases.  This is a very big deal!  This machine is HEAVY!  Two thumbs up for making CF living a little more fun and all with a little rolling cart.

We will be back to our awesome CF dr office in 6 weeks to show CF who's boss.

Bronchoscopy

We dropped the kids off with our friend Amanda VERY early (thank you...I know I promised I wouldn't say thank you again, but I can't help it.  I'm SO thankful for friends!)

We arrived a little early, so we went and sat in the garden at CHOA.  

This is the same garden we paced with friends and family as we wondered how Elena would ever recover from her surgeries 10 years ago!

 It was so nice to enjoy some time alone with our giant daughter.

We checked her in to the day surgery where she was prepped and then we waited and waited.  We played games and waited.  We were visited by our friend and CHOA nurse, Rosie, who kindly brought us coffee! Then we waited.

Then something neat-o happened!  A nurse came in to do more paperwork and check in stuff when I said, "Is your name Brenda?"  It was!  This is a picture of Brenda with Elena 10 years ago!  

 Picture of Brenda with Elena now.  So neat!  Brenda helped us a ton with Elena's ostomy bag issues when she was an infant.  She even came to our home!

It was closer to time for the bronchoscopy!  We learned about all that would be done before she was taken back.  The scope would be inserted down her throat into her lungs where they would take a series of pictures.  Then the would "clean" out her lungs by inserting saline in and then sucking it back out to gather a sample from both lungs for attempting to grow cultures. Finally, they would do her breathing treatments for her by inserting the meds directly into her lungs.

The longest process is the putting to sleep and waiting for that to wear off.

 It was time!

 She did so well!  She was gone for about 2 hours.  Her recovery took longer because she needed a little extra oxygen.  Once she was awake and felt like talking, she wanted to see the pictures.  Daddy showed her all the pictures of her lungs.

 Then he was Dr. Daddy which got her to smile a bit!

 We arrived at 7:30 and we were out by 2:30.  Elena had not eaten since the night before so we headed for a Mexican feast!

 Then we went to pick up the other E's from Amanda where we were greeted by Becky and her kiddos.  Elena wanted to visit shortly.  Nothing helps with recovery better than time with friends for Elena AND Mommy and Daddy!

Elena wanted to read the last chapter of the last Harry Potter book on the way home from the hospital.  She finished it all!  So....

 Naturally we spent our relaxing afternoon watching the first of the 2 part finale of Harry Potter and Deathly Hallows!

We should learn about the results of her scope next week.  Elena will follow up with her awesome doctor the week after that.  Until then, she will be started on a round antibiotics.

Up next: bronchoscopy

We will have the bronchoscopy Friday and then follow up with McKean on July 1st.

Meanwhile, we are testing for a new belt color in karate, enjoying snow cones,

music practice

 family cleaning

 building lego creations (this one is called Harry Potter and the 7 other dudes)

 getting haircuts (Thanks Jessica!)

and playing in the rain

 The dentist is on the to do list this week, too!  How do you make a dentist visit fun?  Maybe a dental scavenger hunt! Hmm, I'm off to figure that out.  Surely some other mom has figured this out already and I will find it on pinterest. :)

We like to keep things busy around here.  It helps to keep our minds off the crazy medical stuff that could consume us if we let it.  Sometimes it does (and it has this past week), but thank goodness for 4 sweet little faces that keep us laughing in this house!

Lung Function Mystery

Last week we learned that Elena's function had no change.  This was good because it had not dropped, but bad b/c we were not any closer to finding out why her function is down from normal in the first place.

Her cultures grew nothing.  That was great news, but still had us scratching our heads.

Our plan was to get a chest x-ray.  We did. Another great experience at CHOA.  Kids gave the staff lots of thumbs up! Plus, as a bonus we saw a friend working that is a nurse there!  Thanks Rosie for the sweet encouraging words!

What we learned from the x-ray?  Nothing.  Her x-ray was clear.  Again, this is good news, but still no answers to the lung function mystery.

Elena also had a skin allergy test.

What we learned from the allergy test?  She is allergic to dust mites. If you read more detail about these little devils you will never sleep right again...they are everywhere and mostly in your pillow because they live off your dead skin. Yum!  Now YOU can sleep pleasantly tonight, too.  She is also allergic to soy. You know, soy, the stuff that is in everything she likes to eat. Super!

Dr. McKean felt that her drop in lung function over the last few months was related to allergy issues. Thank you Southern plants and climate.  However, there is one more test he would like to try. Especially after our visit tonight that showed her lung function dropped another 5%.  SHOOT! Yes, it did drop again.  Shootastic.

Next step:
Bronchoscopy:  She will be put to sleep. They will send a tiny camera down her nose and into her lungs to take a look around.  It will also put a little salt water in her lungs and then suck it back out and see what she has growing in there that refuses to grow a culture from her sputum tests.

Elena appeared calm and as cool as a cucumber as she sat and read her Harry Potter book However, she just told me she wasn't calm at all.  CF makes Elena have to take on so much at such a young age. We ask so much of her and she really does such an amazing job handling it all. She is so very mature.

We will go back to McKean one week after the test (which we book tomorrow for sometime next week) and decide a next step. Hospital is still a potential, but we will cross that bridge when we come to it.

No News, but in the News!

Elena will have a follow up with Dr. McKean in a week.  We will then decide the next game plan.  If she has no change, decrease of, or only slight increase of lung function then we will be going to the hospital for a bit.  If she has a big jump in lung function, we will continue the current medicinal arsenal schedule to maintain and improve.
Until the next appointment, we are staying busy and doing summer fun stuff like playing in the pool, the sprinkler, the pool, the pool.

However, Elena took some time away from water and enjoyed a visit to Channel 2 Action News Weather to shadow David Chandley!  PaPa and Nana bid on a tour at the Wine and Roses auction and won it!  Elena enjoyed learning the in and outs of what it means to be a meteorologist.  She came home wanting to add that to her list of things to try for.

She practiced delivering the weather "teaser" commercial in less than 4 seconds. Nailed it!

 She sat behind the desk and read from the teleprompter. Nailed it again!

 She visited the make-up room. Loved it!

 She watched David work his magic with the green screen. Totally wanted to do this...see the look of nearly jumping out there with him?

 She learned how to read the weather maps and zoom in on areas of the map.

 I think she would have delivered the news live if they let her. No, I don't think...I know!

Thanks Nana, PaPa, and Mr. Chandley for this extra special and educational day!

Great Strides and a Health Update

Elena has been experiencing a slow declining lung function over the last two months. 20% down. We tried antibiotics after we had a cold virus.  Her lung function was checked and went down further after that treatment.  By that time, she was having complications due to the pollen before she could fully recover from the cold. So, she was put on steroids for the crazy inflammation in her sinuses. Again, her lung function was checked and had gone down further after that treatment.  By that time, she caught another cold.  Poor kiddo can't catch a break for her lungs to heal.  She has always bounced back after stuff, but this time we can't get her well enough so she CAN recover.

It seemed that a hospital stay was imminent as we walked into the CF office two weeks ago. However, we were given 2 1/2 weeks to make another attempt at getting the lung function readings to increase.  Dr. McKean discovered that there is a pattern over the past several years where her lung function drops during the pollen season and levels back out at a much higher range by early June.  This pattern was a quite a relief.  She CAN recover because she has.  Of course, with Cystic Fibrosis there are no guarantees, but this was still very hopeful. 

We tried a new routine at home with some different medicines.  We did 3 breathing treatments a day plus taking a med that has worked for her the last two years when this happened: Ceftin. Also, we added some essential oils to a diffuser.  I talked to McKean about this hippy idea and he loved it (seeing as how he was a hippy himself) and has actually been researching it a little more himself.

After 2 weeks, Elena went in for another lung function test.  Joel and I were out of town and my parents took her in for the test. We were happy to hear that her lung function had gone up almost 10%.  However, McKean wants us to continue the 3 a day treatments and essential oil diffusing.  In the mean time, we awaited results from a throat culture that may hopefully explain why we can't get the function all the way back up, but the 10% increase is something to celebrate for sure!

The culture results are in and there is nothing growing from the "CF naughty list".  That is great news.  However, there is still the unknown.  Why is Elena's function still down?

McKean and I seem to agree that this was a Georgia Pollen season thing. He is giving us another 2 weeks to get this lung function back up to her normal which is another 10%.  We will continue the 3x daily treatments, plus her usual groupings of meds through out the day.  We are adding Singulair to the list of meds to be a new regular med.  At the end of two weeks, we will then do another lung function test.  No change in lung function, decreased lung function, or a slight increase of 1-3 percentage points will mean that Elena will go in for a 2 week hospital stay.  A bigger increase means we buy more time to continue our fight on CF at home.

What's the big deal?  It's just a few percentage points of lung function.  I know, I think the same thought sometimes.  However, it is the decreased lung function or the dip in body weight that can cause the common cold to end the life of one with CF all too soon.  I know because I have seen it happen one too many times this year. Fighting for the health of our daughter with CF, fighting to maintain the good health of our other 3 kiddos AND ourselves, fighting to find the "rainbow" in all the down pour, fighting to end Cystic Fibrosis: THAT is what we do!

Our fight to end CF was well celebrated with our Rosebud CF Superheroes at Great Strides! They discovered all the Great Strides teams combined from around Atlanta raised over $1,660,000 for the Cystic Fibrosis Foundation.
WOW!  This is an amazing number and it really rocks my socks off! 

Here are a few pictures from the walk.

 The day started out with traffic, but perfect weather!

 Rain was moving in, so we ate a quick BBQ picnic.

 Mommy with her bud Colin!

 Then we headed over the Lowe's workshop and made a bunch of fun goodies!

 They were a little too good with hammers!

Great Strides is always such a great day!  I love seeing the SEA of CF Supporters in these walks each year!

2 weeks from now I hope to be making an update that includes a lot of increased lung function!!!

A side note, it is CF Awareness month.  This blog post here: http://www.rantlifestyle.com/2014/05/13/how-to-be-friends-with-a-sick-person/#r1SmWFD0pyq44X0W.01

Worth the read.  It gives a lot of great tips for being friends with someone with CF (or friends with their parents for that matter).