Friday, April 5, 2013

Where's the monkey?

She loves to find the monkey in this video...

"Where's the monkey?" on YouTube.

Thursday, April 4, 2013

Thankful Thursday: Jodi Arias and Vengeance (of plants)

It's thankful Thursday time! We all have so much to be thankful for and we love to take this opportunity just to write down each and everything that comes to mind. Please take this time to share with us what you're thankful for as well. If you have a blog expressing your thankfulness, please share the link! Without further ado, here's what we're thankful for:

Mandi's List:

I'm thankful for the Jodie Arias trial. Not because I'm thankful that crazies live in this world - and man, that chick's crazy - but because I'm thankful for the entertainment factor. Every night I watch all the commentary on the day's proceedings and it's jus so interesting. Does that make me a bad person? Hm, well, it might.

I'm thankful for Double Chocolatey Chip Frappuccinos from Starbucks. I have to have something to offset the veggies, right? Don't worry, I get it with skim milk...that's better, isn't it? HA! Oh, but I make sure they still put on the whipped cream If you haven't tried one...DO IT!! It's a perfect addition to a CF a CF wife diet, not so much...but I figure I'm just keeping myself from withering away with all my veggie eating!

I'm thankful for veggies. I've been on a raw veggie kick the last couple weeks and MM MM MMMMM! I prefer them dipped in something, dressing, hummus, chocolate (I kid). But they are just SO good!

Ronnie's List:

I'm thankful for the plants coming back with a vengeance! The winter was rough (by AZ standards) for the plants and we lost a few of them (including our beloved peach tree) to the frost, others were badly damaged. After cutting them all back a few weeks ago, they are starting to really take off. Love seeing all of the green in the yard!

I'm thankful for the opportunity to speak to parents in the CF community. Parents in this community are who keep me going. I truly believe that if you can positively impact a parent, they will positively impact their child. 

I'm thankful for massages. GroupOn is a great place to score some cheap massages. I'm way to frugal to buy a massage at a regular price, but I do love the discounted ones. I'm pretty sure they feel better!!

So, what are you thankful for today?

Proposed Changes for SSI

There have recently been some proposed changes to the way the government determines if someone with cystic fibrosis is eligible to receive SSI. This would obviously affect many in the community, and if you feel that the changes would negatively impact your own situation, I highly recommend having your voice heard. 3 of the most talked about changes are....

1.       FEV1 values based on age/height/gender.  Basically, from what I gather they are lowering the FEV1 value to meet criteria, making it harder to qualify based on lung function. Some people may be “sicker” with even moderate lung function, but they would no longer meet the more strict criteria.

2.       “Episodes of Illness”- currently you have to have 6 “episodes” in a 12 month period, and a hospital stay counts for 2 of those. But they propose to no longer count doctors visits, ER or other outpatient interventions as episodes. We almost always try to treat oral/output first to avoid an inpatient say, and for our “healthier” patients this generally works. Exposes less to hospital environment/cross infections and IV abx which builds resistant bugs. Even an “outpatient” intervention could be home IVs. Even when we are treating outpt, we ask that pts go from 2 to 4 treatments a day including ACT. This has a significant impact on if someone could attend work or school.

3.       If you have chronic infections of bugs like PA, Cepacia, etc that require ongoing nebulized “antimicrobial” therapy IE, TOBI or Cayston or Colistin. I didn’t see anything in there about those criteria.

As one CF social worker who I greatly respect put it,  "I think the biggest changes proposed are lowering FEV and also not counting outpatient physician interventions anymore BAD !!!!". (Also, big thanks to her for providing the three bullet points above)

If you would like to have your voice heard on this matter and/or read the proposed legislation, click here.

$$$ for Preexisting Conditions Pain ACA

From Medpage Today
The high cost of covering adults with preexisting conditions before 2014 could signal greater costs for all individuals within the broader health insurance market, a health economist warned lawmakers.
The Pre-Existing Condition Insurance Plan (PCIP), which the Affordable Care Act (ACA) created as a way to provide health coverage to those with preexisting medical conditions before other aspects of the law take effect in 2014, does nothing to reduce the costs of care for those patients, Thomas Miller, JD, resident fellow at the conservative American Enterprise Institute here, said at a congressional hearing Wednesday.
Despite garnering only 110,000 enrollees -- far less than the 375,000 expected -- the PCIP program has run out of the $5 billion Congress gave it.
The concern is that those with preexisting conditions could spell more trouble for the broader population if more healthy young people -- those still paying premiums but not using as many services -- don't sign up for health coverage when open enrollment starts later this fall. Health insurance companies would need those premiums to help offset the most expensive individuals it would have to cover.
No Democrat and only two Republicans attended the hearing while Congress was out of session and most lawmakers were back in their home districts.
However, the committee's top Democrat, Rep. Henry Waxman (Calif.), issued a statement supporting the ACA while adding the law's reforms starting next year will better solve the problems PCIP tried to address.
"The program was always designed to be a temporary solution to help some of the sickest Americans who had been locked out of the insurance market to get coverage," Waxman said. "It was also set up to be more accessible than the many state high-risk pools that have high premiums, long waiting lists, or are closed to new enrollees, as Florida's has been for more than 20 years."
To read the full article, please click here for access to Medpage Today.

Wednesday, April 3, 2013

A Common Frustration

I wanted to post this email and my response as I'm sure plenty of you out there can relate.

I read your blog every time you post and I just love all you do for the CF community. I am not sure what exactly my point is in the email except that I guess I am a bit discouraged. I read your blog and see stories like today with your guest blogger and I am so happy for her but discouraged at the same time. I guess I don't understand how _____ can be so compliant, do all his meds, exercise, treatments, and yet we are still sitting at high 50's/low 60's on pfts with IV's and hospital now almost every 2-3 months! It just doesn't make sense to me. 
We are doing everything they say and pfts just go down. I know that colonized pseudo, apergillus, and yeast are all to blame in his lungs along with the worse sinus disease our doc has ever seen in a kid all that sinus disease is with many surgeries and he does daily nose sprays, ointments, and sinus rinses. But I see others say when their pfts go down its because of lack of compliance and exercise and then when they do those things they see improvement. But he is compliant!  
I guess I am just frustrated that we are literally doing EVERYTHING we can including now adding a nose nebulizer to dispense antibiotics straight up his nose and I am still watching my kids pfts go down. :( Again, not sure why I emailed except I am a bummed mom that just doesn't get CF ya know? Makes no sense to me. 
Thanks for your blog and all you do.
Your frustration and feeling of being discouraged is totally understandable. I'm sorry to hear that ____ is struggling so much at this time. Not cool for a kid his age to be held back!!

My response to you would be nothing earth shattering, but maybe something I say will help.

 - First, even though it feels like this has been going on forever, it could also just be a season in his life. We never know how long the season will last, but we do know that we have to keep our head up so we can recognize the next season when it comes.

 - When I was his age, I also had PFT numbers that dipped into the 50's. 

 - My best guess, which I'm sure is the best guess of the docs, is that's _____ sinuses are the big issue. Sounds like they are the driving force behind his uphill battle with his lungs. I'm happy to hear you added a sinus neb.

 - If what you're doing now isn't working, do something else. There is something out there that will help. At least, that's always my attitude. Could be a med. Could be a treatment. Could be exercise. Could be more hours. Could be prayer. Could be a combination of a bunch of things. Continue to tweak until you find the right combo. There will be road blocks and speed bumps along the way, but you have to keep driving.

 - All we are called to do is the possible. If we take care of the possible each and every day, there is no doubt that God will take care of the impossible.

 - Continue to be the strong mom that you are. CF is unpredictable. For _____, you must be that rock that is always predictable. He's always watching and takes his cues from you.

Again, nothing I said there is something you haven't heard before. Unfortunately, there isn't a magic pill. All we have is what we do each and every day that will determine our outcome. We can do everything right and still be disappointed in the outcome, but we must remember that our expectations aren't always in line with the Will of the Father. We all have our ceiling when it comes to our health, our only job is to make sure we strive to do everything to find out where that ceiling is.

I'll continue to pray for ____ and your family.

Monday, April 1, 2013

A Fun-Filled Easter Holiday

Holidays are always a blast. Not only did we get to celebrate that Jesus died for our sins this weekend and rose again on the 3rd day, but we got to celebrate it with fun traditions and family.

We always try to see both families on holidays whenever it's possible. This year, with my parents being back in the US, we split up Easter weekend. Saturday we went to my parents house with Josh and Chrissy and spent the day together, had dinner together, and we all slept there. Sunday morning we went to church and then came home and did the traditional Easter basket opening (for Mckenna) and did Mckenna and adult Easter egg hunts. Mckenna had the hunting down, but grew tired of it about 75% of the way through and went to play with her doctor kit. The adult version of the Easter egg hunt was a blast. My parents put cash into eggs and hid them. Each of the 4 of us took turns going and finding one egg. We all got a little competitive to try to get the most money because whoever got more money got a BONUS! It was awesome....and really fun!!

After all the Easter morning fun, Ronnie, Mckenna and I jumped in the car and headed down to Tucson for some family fun with Ronnie's extended family. Mckenna slept the whole way (which made for an enjoyable drive). When we got there we all ate lunch, relaxed, played, and did another Easter egg hunt.

All in all it was an incredible holiday weekend. We are so blessed to be able to celebrate such an important holiday with such incredible family. Hope everyone had a great holiday weekend. He is RISEN!!!