Thursday, May 29, 2014

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!

Monday, May 19, 2014

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:

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). 

Saturday, May 17, 2014

Summit Family Night

We created a little video to show the kids accomplishments on Family Night. It's not really a CF update, but you DO get to hear how well Elena's lungs are working as she shouts out her lines!

Want to see what my family is up to?