Cheers to 2012

I'm sitting in bed sipping my "Severe Cold Theraflu". Two kids were dosed with Tylenol before bed and the baby has been up coughing a few times already. The healthy one in the house is the one with CF, truly a Christmas miracle. Drew hasn't yet caught what the rest of us are passing around. I credit that mostly to his super power white blood cells that are always fighting off infection. I give myself a little credit for my neurotic hand washing and germ prevention strategies. I suspect it's still inevitable that he, too, will end up with an infection of one kind or another. I just hope it's manageable from home when it comes.  Reflecting on the past year and the year to come just seems to happen around this time every year. I know I'm not alone. I have never really been one to make resolutions in the new year. There are always things that I hope to accomplish- things that I want to do more of or better, things that I want to stop doing.  On my list of things that I'd like to stop - worrying so much about that which I cannot control. It's hard, as a parent, not to worry. Add to that a child who needs something in the neighborhood of 3000 calories a day but won't eat and who loves to play and be social but can't catch a cold. He cries when we leave the house without him, not knowing that I'm doing it to protect him from the nasty RSV going around among family and friends. I worry that he will get sick...or sicker I suppose. I worry that he won't have a "normal" childhood because of my worry, or because perhaps I don't worry enough and he gets sick. Sometimes I wish I could just let him be, but it's my job to worry about him. What I can't worry about is the things that I cannot control. I'd like to try to keep that worry under control.  On my list of things I'd like to do more or better - advocate. I have an important message to share. I want to speak up for what I believe it. I'm certainly not ashamed of it. I try to educate myself on matters that are important to me and to my family and friends. I want to share what I believe in, hoping that it will make a difference. I'm not indifferent to most things and I want people to know and understand why I feel the way that I do. I can accept that not everyone will share my beliefs and views, but that doesn't mean I should not share them. You never know who you will talk to that has the power to influence real change. I want to influence real change.  So often, there is banter on Facebook or Twitter or just among friends out and about having to do with some hot button issue. No one really wants to talk about healthcare reform or politics when you're out at the bar, yet they make a snarky remark about whose the good guy and whose the bad guy and why I'm an idiot, the end. If this matters so much to you, then take the time to really learn about it, whatever it is. Have the answers to my questions when I follow up and ask you. And then take that information and go do something about it. Hopefully you went to voted this past November.  The folks that you and I elected into office are working for us. They are pitching our ideas and fighting for our causes. Go talk to them! Email them and call them and go to visit them. Let them know who you are and what it is that's important to you, whether they stand with you or against you. Hopefully you will be able to learn something from them, and them from you. I need to advocate more.  Also on my "do more or better" list is to spend time with my kids. I know that I'm here with them all day every day (trust me do I know that!). I get frustrated with them because there is so much more that has to happen here in a day than just watching a puppet show and doing a puzzle. They are growing up right before my very eyes and I want to savor every moment of it. Who cares that there is another spill on the carpet as its already beyond repair. Wearing our pajamas all day frees up about half an hour of our "getting dressed" time. Similarly with leaving the house. I complain that I need to get out, but between time spent packing a diaper bag, getting everyone dressed, filling sippy cups and packing snacks, diapers, enzymes and hand sanitizer, we lost a good 30 minutes that could have been spent snuggling and watching a movie or playing tag or hide-and-go-seek, all to run an inconsequential errand. Don't get me wrong, some days I pack a bag the night before just so we can run out on a whim to the park for a couple of hours on an unexpectedly nice December afternoon. I just need to better identify my priorities. Kids need to be first. To that point, I need refresher time. I think that this year I have been able to really identify what refreshes me. Sometimes it's a careless evening out with people I enjoy. Other times it's a day of meetings at CCHMC or volunteering in the NICU. These activities refuel me. I have heard it said that parenting is a thankless job. They take me for granted, as they should. I know that I am making a difference for them by simply being there for them and parenting them. The activities that I participate in outside of the home help me to parent them better. The joy that I feel from sharing hope with the parents of a newborn going through what we went through in the NICU is indescribable. The real life experience that I bring to the CF planning meetings is done not only to help improve outcomes for my son, but for everyone who shares our diagnosis. I feel appreciated and I know that I am making a difference and I want to pass that along to my kids so that they will grow up to be kind and compassionate people.  I don't have time to play pretend in my real life. I want to do things that I enjoy with people that I enjoy. I want to be honest and true to who I am and what I believe in. That is what i really want to resolve to do in 2013. I have a lot of energy and a lot of passion. I want to work for Ginger.io and for the C3N and I want them to change the world for not only those of us living with CF but for everyone who suffers from a chronic disease. I want the CF Foundation to know who I am and what I believe in and I want them to call me and ask me when they need an opinion on something. Ambitious goals? Perhaps. But it's what I want. I want to want less and give more.  I appreciate all of the emails and comments that I receive, offering comfort or support or advice. I hope that I've made a difference in someone's life. I'm going to try to continue to focus on hope in 2013. You can follow Doin' It For Drew on Facebook for updates on medical issues and Drew's health. I am on Twitter @ekeelymoore sharing stuff thats important to me. And I will continue to blog as much as time allows because I've got a story to share and I hope that it makes a difference in someone's life. Cheers to 2012! - Posted using BlogPress from my iPad

Finding Balance

Ugh, what to do with a 2yr old CFer that won't eat. This has been going on for far to long. It hasn't ever been a huge issue because he's in a fine range for his height/weight and everyone who sees him says "he looks healthy!" (which I secretly hate - what do you expect him to look like?!). Anyway, last time we were at clinic, his percentiles were dropping. Nothing terribly concerning, but we're working on getting in extra calories. Any calories frankly. He drinks half n half now instead of whole milk. One cup of that gets you about 48 grams of fat. He usually won't eat breakfast now unless its pancakes, waffles or french toast. Forget about it at lunchtime. He use to be a great lunch eater, filling up on high fat yogurt, hot dogs or chicken nuggets, cheese, grapes, whatever. Now he will hardly drink his half n half without a fight. We give him apple juice or Gatorade for a little extra salt, but I try to get a cup of the fatty stuff in first. He might have a snack in the afternoon, he might not. It doesn't seem to matter what it is - cookies, milkshakes, fruit, pretzels - he's simply not interested. Then there's dinner. We started sending him to his room because when we say that its dinner time he throws a fit and won't sit at the table. We even give him the option to just sit with us and not eat his food but he won't do it. His options are sit at the table or go to your room for time out and he quietly complies. We had been offering ice cream or another fatty snack before bed (yogurt or something that looks the same but with far less fat for the rest of the fam, don't worry, we know we don't need it too), but he doesn't want that anymore either. If I get 3 cups of half n half in in a day and nothing else, that's almost 140 grams of fat, but I fee like its not good enough. He's a little on the short side because his body just doesn't get what it needs to grow appropriately on its own, and i can't see to get anything in. Today for lunch he had Goldfish crackers sauteed in vegetable oil. He ate a handful and quit.

I don't think its that's he's not hungry. I think its a control thing. He wants to do what he wants to do when he wants to do it. And herein lies the problem: I'm trying to raise a reasonable contributing member of society here. I don't want him to think that its his way or the highway. I want him to follow rules and understand and respect authority. But I also want him to grow up healthy (CF healthy is very different from non-CF healthy) and that means getting the calories in however I can, which brings me to problem number 2 - bending the rules for him and not the girls. They get what we make for dinner and if they don't like it then they don't eat. They don't get a snack until they finish their meal. They must sit at the table until everyone is done. We have fruit or cheese or yogurt for snacks - healthy snacks during the day (we try). Yet when he won't eat his dinner, which is every day, he gets cookies or whatever he wants. When we do have a treat, he gets the yummy cookie or even two or three if he will eat them, while the girls are strictly limited to the portion I give them. I know that I'm doing what I'm doing with everyones best interests at heart, but they don't know that and I don't like it. I've gotta find balance somewhere. I've started trying to talk to Ella about CF and explaining why he gets what he gets. I also try to make the differences unnoticeable - FF Frozen Yogurt vs the highest fat content ice cream one can buy, with heavy cream added to boot, or baked goldfish crackers vs. goldfish crackers that have been sauteed in vegetable oil. They don't realize that the milk in their sippy cups is dramatically different from one another.

So my problem is twofold - getting a boy to eat and maintaining my sanity and sensability as a mother. Its hard. Any and all suggestions are welcome.

Just some things

Christmas vacation cannot come soon enough. I am so looking forward to having a handful of days at home with extra adults and absolutely positively nothing to do. We have been running to appointments and activities and cookie exchanges and i'm just ready for a break. We got all of the kids gifts wrapped last night. Jake has 1. I supposed its better than none, but I am afraid that Ella will notice if Santa only delivers 1 gift for Jake. Finding something that he needs is going to be a challenge, but its the last thing I need to check off of my list so I will take the challenge.

My call last week with Ginger.io went great. They seemed as excited to talk to me as I was to them. I was able to learn a little more about their company and they asked me how I got interested/introduced to Ginger.io. Then we talked about what I want to do with them, for them. They are interested in working together, but in what capacity is yet to be determined. I was asked to be featured on their blog series "What Inspires You" so hopefully we can get that ball rolling in January. I have so much more energy that I want to put toward them so I'm hoping that we can talk again in the New Year and figure out how to make it happen. 

I was on an amazing call on Friday afternoon with the C3N and ImproveCareNow about how they're working together to change the face of chronic disease. It was an incredible presentation and I'm working to get it in front of the eyes of a large group of CF caregivers. I think that if they can find 30 minutes to watch the guts of the presentation,  they would realize the value of and need for the adoption of their application. For anyone with CF or anyone dealing with another chronic condition, find yourself a nice little quiet 30 minutes and watch the second part of this presentation (start around the 17 minute mark). I would love to know what you think about it in terms of managing your disease. You already know what I think - amazing!
https://vimeo.com/55781687

One of the top guys at the CFF is coming to Cincinnati at the end of January to hear about our work in bringing the C3N to Cystic Fibrosis. We've been working hard to prepare for his visit and I can't wait to share all of the wonderful things that come from that meeting. I might even get to meet the Ginger.io folks in person! I don't know if they are coming to the meetings, but they are thinking about a trip out here this winter and I'm looking to talk with them about how we can work together!

Hoping to get a year-end wrap up on here before Dec.31...we'll see. With our luck we will probably be plagued with illness during the two weeks we have home together and I'll be begging for school to start again. Maybe not ;)

Tomorrow is the big day!

Tomorrow is the day I've been waiting for my whole life! Okay, probably more like the past month. I finally have a call with Ginger.io to discuss things like how we can work together!! (Can you tell i'm excited by my overuse of exclamations!) I'm ready for it. I'm ready to tell them what I love about them and what I can bring to the table to help Ginger.io reach celebrity status...or something like that. Stay tuned for how that call goes!

I had a meeting at Children's today with Drew's doctor and a few other folks about a transition project that they've been working on. Traditionally, transitions in CF related to going from pediatric to adult care. It has been recognized that the entire journey with CF is one of transition - from hi-calorie formula or real food, from being a toddler to going to school, from taking enzymes with applesauce to swallowing them whole, from mom and dad doing your treatments to taking responsibility for them yourself. But trying to identify what kids should know and know how to do when is a tough thing to figure out. And there is a fine line between simply parenting your child and taking pointers from your doctor on when your kid should know or know how to do certain things. So we're trying to find a way to ask people what they do and how they do it and how they feel about a whole number of different things. It was a great meeting today and hopefully the momentum keeps things moving in a positive direction.

Switching directions completely, I've been thinking a lot lately about friends and relationships and how this whole crazy CF thing has changed so much for us, even though I think we're really just still the same people. I get so much energy from the stuff I work on at Children's and the people I meet, both in person and through the different forms of social media that I use to share our story. I don't do any of what I do for recognition. I do it for Drew, honestly and truly. A couple of weeks ago someone had asked me what I would tell someone if they asked me about CF and didn't know anything about it. There's a lot I would tell you and honestly it would depend on the audience. I don't have one standard thing that I say. There's a lot that I want some people to know about Drew and about our family and what our lives are like on a daily, sometimes hourly, basis, and there are other people who I am comfortable just giving the $ .10 version to. Then there are friends or acquaintances or just perfect stranger who may know our story or who have heard from us and they might talk to us about CF or about us or whatever, pretending they know what we're going through or how we feel. Some people straight up don't care, or don't let us know that they care and I'm mostly okay with that because its not their job to care. I appreciate it when friends do care. I appreciate it when perfect strangers care. 

I read an article the other day called "How to Talk to Someone With Cancer". The article should have been called How to Talk To Someone With a Chronic or Terminal Illness, because everything she said is applicable to our situation and I'm sure many others. There is something that she said that I most want to share with all of my family and friends and anyone else who knows us or knew us or wants to know us. 

"You say you’re not good with hospitals, or you’re sensitive because of your tragic family history, or this is really inconvenient because you’re going through your own problems right now? Yeah. Suck it up. I recently had a now ex-friend say, after a year of near total silence, “I've been thinking of you so much.” And if I’d been a mind reader, that might have meant something.
It doesn't take big gestures. It takes less than a minute to send an email or a text or pick up the phone or walk over to someone in the supermarket and say, “How are you?” That’s all it takes to let someone know you’re still on her team. And that minute can be the difference between a miserable, scary day and feeling supported and reassured."

And that's all I have to say about that. 

A Message for Speaker Boehner from the CFF

As Congress develops a plan for addressing our budget deficit in the coming weeks, please protect funding for biomedical research and drug development efforts at the National Institutes of Health and the Food and Drug Administration in any agreement that is reached

The NIH and FDA are critical to developing treatments, and eventually a cure, for CF. These cuts will damage many programs that improve the lives of people with cystic fibrosis, from studies that help improve nutrition for babies with CF to the review process that ensures new drugs are safe and effective.

The NIH and FDA drive innovation and America’s economy.

o   An 8 percent across the board funding cut would reduce funding for biomedical research at NIH, leading to 33,000 fewer jobs across the U.S. and a corresponding $4.5 billion decrease in economic activity.
o   The FDA is responsible for oversight of about $2 trillion in goods and services and nearly one-fourth of all consumer spending in the United States, and drastic budget cuts will slow drug and device approvals 

Once again, please support our investment in life-saving research and drug development and protect NIH and FDA funding in negotiations over deficit reduction measures.

Research and Drug Development that Could be Impacted by Budget Cuts

National Institutes of Health

BONUS

The multi-site Baby Observational and Nutrition Study is a partnership between CFF and the NIH and is being conducted at 15 sites including Cincinnati Children’s Hospital Medical Center and Nationwide Children’s Hospital in Columbus. Newborns with CF often have trouble absorbing nutrients, may suffer from malnutrition, and thus might not grow the way they should. This study aims to better measure growth in infants with CF, better understand factors that contribute to poor growth, and to study the effect of a particular therapy on nutrient absorption in infants with CF.  A reduction in NIH funding has the potential to slow or halt this research, which could serve as the basis for treatments that improve the health and quality of life for kids with the disease.

PUSH

The Prediction by Ultrasound of the Risk of Hepatic Cirrhosis in Cystic Fibrosis (PUSH) study, in the NIDDK’s Childhood Liver Disease Research and Education Network (ChiLDREN), looks at the risk of hepatic cirrhosis in those with CF between the ages of 3 and 12. Hepatic cirrhosis, or severe scarring of the liver, is a serious problem for those with cystic fibrosis. This study is conducted at 11 sites, including at Cincinnati Children’s Hospital Medical Center, and a reduction NIH funding could have a detrimental effect on this research.

GENETIC RESEARCH AT JOHNS HOPKINS

NPR’s Morning Edition reported on sequestration’s potential impact on genetic research into cystic fibrosis – you can find the link to the story here.

Food and Drug Administration

Groundbreaking new cystic fibrosis treatments are making their way through the CF pipeline, and we’re concerned that sequestration will lead to layoffs at FDA and a reduction in the resources it needs to move drugs through the process efficiently. As you know, Kalydeco – the first drug to address the underlying cause of cystic fibrosis – was approved by the FDA in only three months, one of the fastest approvals in the agency’s history. Budget cuts could slow this process and hinder efforts to quickly move treatments to patients.

Still cute, but with one less tooth

I had a great day on Friday. It was our monthly QI meeting with the CF team. I was finally able to get enough people on board with the idea of bringing the C3N to CF that they scheduled a meeting to talk about it right before our PIQI meeting, maybe because they realize that I'm on to something, or maybe just to shut me up. There is now a project charter in place for the C3N for CF with dates and specific activities to be completed and people to complete them. We have a meeting scheduled in late January with some high level CF Foundation folks to try to get them on board with our idea so that everyone can utilize it. I am so pumped about this you have no idea. I think that the C3N is going to revolutionize care for CF.

So the thing we've been working on as a quality improvement project is coming along nicely. I don't recall how much I've talked about the project on here before so I'll give a quick overview. A group of parents got together with the CF clinicians to discuss their perfect CF world - what can we change, what can we improve, what can we do to make your lives better. After dozens of ideas were thrown around, we came upon an idea. So every Thursday, our doctors and nurses and other caregivers get together for what is called a Chart Conference, where they discuss the patients who will be in the following week and make decisions on who they need to see. As patients, we thought that our input would be beneficial for several reasons. First, it would give our caregivers an idea of what's been going on with us since our last visit. It would also make them aware of questions or concerns that we have before we are in clinic, thus saving some time in addressing our issues when we are in clinic for our already overly long visit. So the PIQI team (Parent Involvement in Quality Improvement) has been working on a Pre-Clinic Survey that will be sent to patients about two weeks before their visit, allowing them to let the team know what their priority or main concern is for the upcoming visit and then choose who they are interested in seeing when they come in for their visit and tell us why. The CF team will take this information from the patient into their Chart Conference and use patients input and their best judgement to plan a patients visit. The idea is to empower the patient and streamline the visit. I'm on board.

So as we are planning all of this out, I couldn't help but think to myself, "Couldn't we use the C3N to do this?" but it seemed like most of the team wasn't ready to swallow something of that scope, so we stuck with our plan and we are working to implement it. We are using a secure messaging system that CCHMC has called MyChart, which is fine. There is an app for my phone that dings when I have test results or a message from one of Drew's caregivers. It does what its supposed to do. We are working on a post-visit survey to assess what people think of it and gauge its effectiveness. We have only tested it with a few people, but it seems to be generally accepted. People like feeling empowered, especially in a chronic disease where there is so much to deal with that you have so little control over.

As it stands, I am currently the parent involvement in the PIQI. There were a few others that had show some interest but haven't been to more than one meeting. I get that people are busy and whatever, but my perspective on involvement is that the more I can do, the more I can be heard, the more I can influence change, the better. It is Drew's life that we are talking about. If I do not stand up for him and advocate for him and improve practices and whatever else I can, who will? Decisions will be made without patient advice and consent. And why? Because we all assume that someone else will do it. I'm gonna do to.

Anyway, as we were talking in this meeting, I asked the 3 doctors and several nurses and other clinicians what their main objective was in getting this feedback from the patients and they said that it was to understand what is going on with patients between visits. They plan their clinic visits based on what they know from the previous visit and whatever phone calls or conversations that they've had with the patient between visits. I get it! They can do more, help us better, if they have the whole picture. But the survey that we are sending them is being filled out by patients or parents just before a clinic visit. People may not remember what has been going on for the past 3 months, or might tell you that they don't want to see anyone but the doctor while they are in, when the reality is that they've lost their job and don't have benefits anymore or broke their nebulizer and should be seeing a respiratory therapist or any number of other things.

So I say, "What about using Ginger.io?". They use behavioral data and surveys to create data points and provide insights into what goes on between visits. What if we get a better understanding of how we can use this to get exactly what we're looking for? I don't know all the details, but I suspect that you can personalize survey questions that you ask folks - how have you been feeling? are you experiencing and increased cough? have you been able to take all of your medications? All of this, plus the behavioral data, would give the clinicians the perfect view of what is going on between visits, real time. We could, in essence, predict a pulmonary exacerbation and treat it before it gets out of hand. And then, for the very first time in my mentioning of the C3N or Ginger.io, they paused and asked some questions and seemed truly intrigued. We're getting there!! I want to talk more with Ginger.io about how it all works and what I need to say next to sell this in. And then I'd like them to hire me. Ginger.io, not CCHMC. Though I'd take either. Overall the afternoon went well. Its invigorating to sit through these meetings, making decisions that matter in improving outcomes for people with CF.

I got Ella from school and came home. Everyone was in good spirits, mostly happily playing and getting along. Then around 5:30 the kids were playing with an empty box in the dining room and Drew slipped and fell and he caught himself with his face on a dining room chair. When he stood up, screaming, he was missing a tooth. Upon further inspection, it had not been knocked out, but jammed all the way up into his gums. Additionally, he split his lip pretty good. So back to CCHMC we went! They gave me the option to leave the tooth as is and risk possible infection or nerve damage, or pull the tooth. My poor boy! It was so bad that we decided to have it pulled, which turned out to be the right decision because there was so little actual pulling involved. Once the dentist grabbed the tooth, she barely had to tug at it before it came out. She said that it wasn't even attached, that he had done all the dirty work himself, she just got it out. His adult teeth won't come in until he's probably 7 or 8, so we shall remain down one front tooth for something in the neighborhood of the next 5 years. It's just a tooth.

So that was my day yesterday! I was invited to participate in a Transition project with the CF team so I'll be back at Children't next Tuesday for that. I really do love being able to provide my real life experiences to them as they work to improve our lives. Hopefully I can get the scoop from Ginger.io next Wednesday when I talk to them about their job opportunities. I deserve a cut if I get the CF clinic on board before I even work for them (assuming I will someday soon work for them in some capacity). Just sayin'.

Christmas Cards for Dalton

From a CF Facebook group:

"In Salyersville, Kentucky there is a brave little 9-year-old boy named Dalton who has been living with Cystic Fibrosis and has become increasingly sick and is expected not to live much longer. He recently was allowed to come home, medical supplies in tow to be closer to his loved ones. Dalton's last wish is to break the world record for receiving the most Christmas cards, which is 35,000. He is currently up to 15,108 cards! 

Anyone who would like to participate in sending Dalton a Christmas card be sure to include your city and state so he can see how far the support has come from. The earlier the cards the better!"
...
Sends cards to: Dalton Dingus HC 62 Box 1249 Salyersville, KY 41465

Oh heck yeah!!

Just yesterday, someone asked me if I had heard from Ginger.io, my new favorite obsession. Kind of disappointed, I responded that I hadn't. I knew it was a long shot, reaching out to them regarding a job posting that they had put out on Twitter a few weeks ago. I didn't attach a resume, mostly because I didn't have one readily available. They were looking for someone full time, in their Boston office, with flexibility to travel. I wasn't even looking for a job, less a full time one. In case it was unclear, I live in Cincinnati, not Boston. And travel is almost out of the question. Unless someone wants to pay me a shit ton of money. Or even just a little really. But the job listing was so exactly what I want to do, what I can do, what I have been doing...with the CF foundation, our CF clinic and with the C3N project. I have so badly wanted to get Ginger.io into the CF world, and what better way to do it than to put my passion into it as work. So I emailed them, asking if they would be willing to be creative and flexible and told them how right I thought I was for this position. Well, I didn't hear back from them. And just yesterday, when asked if I had heard anything, I had to respond with the reality that perhaps they were looking for something more specific to the job that had posted and it wasn't something that I had, at least not now. Every time my phone dings to let me know there was a new message, I got a little excited hoping that it would be them contacting me, telling me that they wanted me as badly as I wanted them. Well, ladies and gentlemen, I answered a ding today and it was an email from none other than Ginger.io!!! Here's what it said: We've been really impressed by your persistance and enthusiasm for Ginger.io, and would love to set up some time to learn a bit more about you and tell you more about Ginger.io and how we could get you involved." Oh my God! Even if they don't want to or can't hire me at this time, I'm in the door! Hopefully I can find a time to talk to them this week about how we can make something happen. Stay tuned on that. 

This post was going to start out as another bitching to whatever moron forgot to include patients when creating prescriptions plans and insurance policies. I wrote a while ago about how frustrated I was with the prescription refill process I must go through every month. I'm sure many would say that i'm doing something wrong. Perhaps I am, but I'm pretty diligent in crossing my T's and dotting my I's. And still there is this headache every single month. Let me tell you what I'm annoyed about this month. Because, for some god-unknown reason, my insurance will not allow an override to have my Pulmozyme filled at the CF Services pharmacy, I have to get that drug from CVS Caremark specialty. This pharmacy doesn't take our secondary insurance, BCMH, therefore imposing a $30 co-pay monthly for this one drug. Fine, still not terribly annoyed. Why I'm annoyed is because every single month when I go to refill this prescription, I spend 15 minutes on the phone (no big deal if you don't have 4 kids ages 4 and under) at the most inconvenient time (because they call you for the refill, usually around noon, right when I'm trying to wrangle everyone to eat lunch and get dressed before we leave for school at 12:15. It's hard to get 4 kids buckled into carseats with your cell in your ear trying to talk to an automated system who "didn't get that" because the kids are all yelling. Once I finally get through to a person, I have to answer a slue of questions about side effects and changes in his "condition" before they get to the delivery scheduling. They always start by telling me that they are flexible, any day this week will work for delivery. Here's the kicker - they require me to sign for this med, and the UPS guy comes between 9am - 7:30pm. 

I rarely leave the house. If you had this many small children you wouldn't either. It takes me 15min round trip to drop off and then pick up Ella from school. If I miss this delivery, they won't take it to my neighbor (don't ask me why, even with a note stuck to my door if still doesn't make it). They take it back to CVS Caremark and return it. And when I have to call to tell them I missed it, they can't process a re-order because its too soon for a refill. You've got to be kidding me. I'm no rocket scientist but there must be a better way. I have only missed the truck once and the irony was that I was actually at home, just in the basement changing the laundry. When you tell them this, they immediately think that you are lying about having been home. After an hour on the phone and endless managers and loops to jump through, they reschedule your delivery and ask if you will be home this time. I don't care if my house is burning down and my kid has a stick in his eye, we will be here, waiting on the front porch in the rain for this stupid medicine that my kid needs. If you could possibly help a sister out and make this process any easier I would so greatly appreciate it. I dread this process every month. But I'll fight until I can make it easier and better and right, not just for me but for everyone who has to deal with this. Watch out Mr. President, I'll be knocking on your door if I can get that far. Maybe you can fix this. 

Tomorrow is delivery day, so if anyone is looking for me I'll be here, at my house. Except for that 15min race to school and back. And stay tuned for what's next with Ginger.io!!

When I grow up

I have been so out of time for the blog lately, and I hate that because I love sharing whats going on with us. Admittedly, my lack of time is self imposed as I sign up to help out or attend everything that is offered to me.

We had a really nice Thanksgiving last week. Some of Martin's family was able to join us for dinner on Thanksgiving and hang around for a few days, allowing me plenty of time for my Black Friday shopping and several photo sessions that I had scheduled. The photo biz has really picked up recently. I am on the fence if I want it to really turn into anything more than a [really] small business that I can occasionally make a buck from. I have been thinking a lot lately about what I want to do with my life after the kids are all in school. I have gotten so involved at CCHMC with CF and some other parent opportunities that have come down the pike. I really, really love being there and spending time with the people that work there and learning about all that they do and have planned to do to improve. I remember when I was first invited to participate in the ParentTOUCH program and the director of family services (I believe) came in to talk to us about the program. He said that their mission was to eliminate dissatisfaction. I was immediately humbled by this. Working at Children's is so much more than just a job or a paycheck for the people who work there. They are such special people who are truly making a difference in the lives of so many people whose paths they cross every day, and I started thinking about how I wanted to be a part of that.

As working began within the PIQI group, I got the chance to speak with several members of the CF team and other groups within the hospital and learn what they do and how I can help them. I became involved with the C3N project and now I am a part of a team that is working to bring this to the CF community. As a branch off of that, I've had the opportunity to learn about an amazing company called Ginger.io, that turns personal behavioral data into insights about your health and provides the opportunity for earlier interventions. (check out their website for the scoop on how that all actually happens).

I had a meeting yesterday with the Cystic Fibrosis Foundation about all that they have going on right now and what capacity I have to help them. We talked for almost 2 hours about what events I like and what I don't so much and how I can help them. They want to make sure that they're not burning me out with their requests for help. I already do their advocacy work, pretty much alone since I can't seem to get another darn person on my side. I love to help them out with whatever I can because ultimately (and admittedly somewhat selfishly) its helping us out in the long run. So I told them what I love and what I don't love so much and we talked about how they can use me for the upcoming year. One of the big things was bridging the gap between the foundation and the clinic, something I need to talk with the folks at the clinic a little bit more about next time I'm in.

In all of this stuff that I've been working on, I have been able to take a step back and see an underlying theme - the need for and importance of collaboration. Collaboration between patients and parents and physicians and researchers and data scientists produces that shared goal of improving outcomes for our kids. I want to be a part of this. This is what I want to do.

So the other day, I was doing Drew's breathing treatments, flipping through my Twitter account, and came across a job listing for Ginger.io. Here's what it said:

Are you happiest at the heart of a group? Do you get energy from interacting with people? Do you enjoy being the “voice” of an organization? If so, then you might be a great fit for Ginger.io. We are currently looking for a full time Patient Experience Manager to help us interact with and support our patient users. We want someone who is outgoing, empathetic, and able to easily connect with people. A passion for detail and organization is key, as you’ll be managing many different relationships across our community. And as the “face” of Ginger.io with our patients, you’ll be an essential voice inside our company as well, helping us think through how to best meet their needs.

Um, HELLO!! If I could have written down on paper what I want to do with my life based on the things I've been working lately, no better words could have been chosen than the ones written here. This is my job!! I want to do this!! But wait. I still want my family to be #1. ARGH!! This is why I thought that perhaps the photography gig would be a good choice for me - make my own schedule, work when I want to, control my own income. But I would have to grow my business if I wanted to really make money doing it. And frankly, I'm pretty happy with it the size that it is because it is both easy to manage on my own and allows me the flexibility that I'm looking for in raising my family.

I decided that I couldn't let this opportunity pass, so I emailed Ginger.io telling them all about myself. I have business experience (pretty decent business experience I might add). I have healthcare experience. I have built relationships with important people to promote my cause. I am a voice within the CF community (a pretty loud voice, some might say), and if we want to work to bring the C3N and Ginger.io to CF, I need to be a part of this. I know that the time that I am willing to put into this isn't exactly what was listed out in the job description, but the time that I can put into it if they are willing to be flexible and creative in my job description, will be productive. If I haven't already scared them off with my strongly verbalized desire to be a part of their team, hopefully I'll be hearing from them soon on how we can make something work.

So there you go. I have made the decision that I want the work that I'm doing to be more than just me offering an idea or suggestion at a meeting I can weasel my way into. I want my voice to be heard and my vote to count. I want to be a part of the decision making and help to improve the outcomes for kids like Drew. Not full time just yet. Jake isn't even 1 yet and I want to take him to story time and music class just like I did with Ella and the twins. But he's going to grow up and I'm going to need to be a financial contributor to this family [especially if we're sending this village to Catholic school]. I really liked the job that I had before I decided to stay home and raise our family. But the purpose that my dealings with Children's has given me has completely changed the way I look at the world. I have a lot to give and I want it to be purposeful.

Our clinic visit went....

GREAT! Everything looks good. Drew is growing great, sounds clear, looks good. Our culture results came back clean so all around things were really good!

A couple of weeks ago, just after the NACFC, I had emailed Drew's doctor a bunch of questions. They were just things that I'd heard at the conference that I was curious about or whatever. We talked about some of it a little bit while we were in the office, and what I learned was that there weren't really cut and dry answers to most of it. Here's what I wanted to know:

I went to the Infection Control session at the NACFC. There was an interesting presentation on patient to patient spread of bacteria as identified by genotyping. They were suggesting that droplets can remain in the air for anywhere from 45min - 2hrs after a patient has left the room. In the past, when Drew has cultured pseudomonas, I go a little nuts -  trying to clean things differently and throwing out bath toys that may be grosser than they should, clorox wiping every surface before anything touches it  - then after 24hrs I realize that i'm being nuts and go back to being reasonable. I will admit that I have often wondered if he could be picking something up in clinic. As much as I realize the value of having him there every 3 months as well as when he is sick, I can't help but get nervous as he plays on the floor and touches everything he can reach. But he's two and I have to balance letting him be a kid with my nerves and need to keep him healthy. Anyway, my point/questions is whether you guys every genotype the different bacteria that patients culture to determine if the same strain is being passed between patients who may have shared a room? I'm sure that the rooms are cleaned between patients, but does that include everything from the floors to the light switches and everything in between? Is there ever any measure taken to clean the air between patients? The presenter suggested that there was a significantly increased risk of acquiring a pathogen if you are in the same room after a patient who is colonized with something like pseudomonas or burkholderia cepacia. Just wanted to see what you thought about that. 
The next question is about neb care and breathing treatments. I've asked this to Ginger before but I still don't totally understand it so maybe someone else might. It is suggested that after sterilizing your nebs, you rinse them with sterile water. Aren't they already sterile? Also, I think that we use more neb cups in a day than average and here is why. Once we use a neb, it is damp. We set it aside until its time for our next treatment. For us, the place we keep it is with the nebulizer machine which is on the bottom shelf of a table where we keep all of Drew's meds and equiptment. So now the damp neb is in a dark place. He was just breathing into it - if he has got some bacteria in his airways and is coughing into the mask/cup, couldn't this neb just be growing bacteria only to be inhaled again during our next treatment? I feel like I'm paranoid that he's going to re-colonize himself with whatever bacteria he has so I end up using new nebs almost every time. I swear I'm not totally neurotic, just trying to figure out the best way to do things to keep Drew as healthy as possible.Also on the neb front, I notice when Drew was in-patient in CHOP this summer that the Drew was coughing a ton during his vest and breathing treatments, even more so than when he was at home and sick before we were admitted. I felt like it was the most productive airway clearance we had every done. I asked a bunch of questions (i know, hard to believe) and realized that they are administering the medications at 50psi and the machines at home only run at 30psi. So at the conference I found Pari and asked them and they didn't really have a good answer for me. So I asked Genentech and Novartis and both told me that the indications were for medications to be administered at 30psi - that's what all their medications were tested at and to ensure proper dosage and absorption into the airways. No one knows why the hospitals run at 50psi but Pari, Novartis and Genentech all seemed shocked to learn that the medications were being given differently than indicated by the pharmaceutical companies. Do you know why this is or have thoughts about this discrepancy? 
I saw a presentation on Gallium in eradicating psuedomonas. (Symposium 13). My two questions are 1) Do you think that this could be an option for Drew since he shows an intolerance to inhaled antibiotics and 2) Can bacteria become resistant to it? It was really interesting to listen to the presentation. Its already approved by the FDA. It looks like its been mostly used in adults, but it just sparked my interest as Drew seems to continue to grow pseudomonas. 
My last question is about the use of intranasal DNase to help keep sinus disease under control (Workshop 28). Is this something that you're at all familiar with? I can't tell if this was just a study or if its being used in some patients. Whenever we see Dr. E, he tells us that he doesn't usually see CF patients with as advanced sinus disease as Drew has until they are about 7 or 8 and that Drew is the youngest patient he has ever done surgery on. I thought that if the intranasal DNase therapy was available, it might be beneficial for us to at least try it.

I think they were all pretty good questions. The Gallium presentation was specifically of interest as we seem to be intolerant to inhaled antibiotics, at least for now. The presentation led you to believe that pseudomonas is never really truly eradicated, just hidden way far down in the lower airways and not always causing a problem. If something like Gallium can really eradicate it, I'm definitely down for giving it a try. We currently aren't culturing it, but if we do again I will probably resurface this question.

One other thing I wanted to share tonight about the CFF that is pretty incredible. They have now partnered with Pfizer on a Drug Discovery program for the Delta F 508 mutation (one of Drews!) over the next 6 years. I think people underestimate how close we are to a cure for this disease. Its funding that's keeping us from curing this - that is it. The more money, the more research and the cure will be found. Talking with the top scientists and researchers, the cure is there...we are so.stinkin.close. This is just an amazing opportunity for the CF Community. Read the article by clicking here.

Happy Thanksgiving, y'all. Hoping I have some time over this break to get some thoughts down and get some good posting done here!

Watching this will be so worth your time!

This video will make you smile. This is why I love Cincinnati Children's Hospital so much. The people that work there are so incredible with their spirits always high and outlook always optimistic. Working at Children's is not just their job, but rather their calling. This video will make you smile.

Upcoming clinic visit

Its starting to get cold here in Cincinnati. That means two things - first, that I better get my act together for a long winter inside with 4 kids. And second,  that the germy season is among us. Drew has been on antibiotics for the past 10 days for a junky cough. It seems to get better, but there are mornings that it still sounds gross. I'm worried that when we go to clinic on Wednesday that he will grow pseudomonas again. Of course we won't know what he grows until probably Monday at the earliest. We've been doing airway clearance 4 times a day, which has kept us pretty much homebound. Its definitely nice having the Pari Trek now which I keep in the car and can do breathing treatments when we are taking Ella to and from school.

During this time of antibiotics and increased treatments and stuff, I got thinking about the adherence problem that many CFers struggle with. I saw many presentations at the NACFC about why doctors think people don't take all their medications regularly. While we haven't skipped an airway clearance or a breathing treatment or a single dose of an antibiotic to date (okay, maybe once), I think that a big part of the problem for many people is simply forgetting. In the morning, we have to give Drew 1ml of Vitamax and one Prevacid pill. We have to give him enzymes with his milk, and then more with his breakfast. We do Atrovent, Hypertonic and Pulmicort after that. That's on Mondays. On Tuesdays, Thursdays and Saturdays, we add a Vitamin D to the morning mix. If Drew is on Omnicef, we have to skip the morning Prevacid because you can't give an antacid within a certain amount of time of giving the antibiotic. So now we have to remember to give the antibiotic and also to give the Prevacid after lunch. After nap we do another Atrovent and Hypertonic, and in the wintertime when Drew is often sick, we do his airway clearance then too. Between gymnastics on Tuesdays and the occasional story time or lunch out with friends, we need to remember to pack our enzymes because those get dosed regularly throughout the day (roughly 25/day). After dinner we do Atrovent, Pulmozyme and Pulmicort and then can't forget evening Vitamax and Prevacid when he's healthy, or Vitamax and antibiotic when he's sick. And when I'm talking antibiotic, I mean an oral one that we give him from here. When he's on IV's, the whole story changes as the two IV's need to be given every 8 and every 12 hours (one 3x a day and one 2x a day) very precisely to avoid damage to his kidneys. On top of all of this, we try to make sure that he's getting a billion calories in a day and plenty to drink to avoid dehydration, which can happen very easily to people living with CF. All the while, we try to live our lives as normal as possible and not let CF run them. Its a very time consuming disease, and the prescriptions for more to do just continue to pour in.

Honestly I think that people simply forget to take medications sometimes. We are diligent about it, but I know that not everyone is. Perhaps they don't fully understand the importance of such diligence, or perhaps their schedules are busy and the burden of the disease and all that it requires just makes them forget sometimes. I don't know why it is really, but I would love to work on a project with our clinic to try to improve adherence or at least better understand the problems with it and figure out ways to make it work for everyone. Here's a link to the big presentation on adherance from the NACFC for anyone interested in checking it out - https://www.nacfconference.org/art/plenaryarchives/2012%20Riekert.pdf.

The Good Doctor

The Good Doctor

Jesse Dylan, November 5, 2012

Dr. Brian Goldman is right.

We expect a level of perfection from our doctors, nurses, surgeons and care providers that we do not demand of our heroes, our friends, our families or ourselves. We demand this level of perfection because the stakes in medicine are the highest of any field -- outcomes of medical decisions hold our very lives in the balance.

It is precisely this inconsistent recognition of the human condition that has created our broken health care system. The all-consuming fear of losing loved ones makes us believe that the fragile human condition does not apply to those with the knowledge to save us. A deep understanding of that same fragility forces us to trust our doctors -- to believe that they can fix us when all else in the world has failed us.

I am always surprised when people say someone is a good doctor. To me, that phrase just means that they visited a doctor and were made well. It is uncomfortable and unsettling -- even terrifying -- to admit that our doctors are merely human -- that they, like us, are fallible and prone to bias.

They too must learn empirically, learning through experience and moving forward to become better at what they do. A well-trained, experienced physician can, by instinct, identify problems that younger ones can't catch -- even with the newest methods and latest technologies. And it is this combination of instinct and expertise that holds the key to providing better care.

We must acknowledge that our health care system is composed of people -- it doesn't just take care of people. Those people -- our cardiologists, nurse practitioners, X-ray technicians, and surgeons -- work better when they work together.

Working together doesn't just mean being polite in the halls and handing over scalpels. It means supporting one another, communicating honestly about difficulties, sharing breakthroughs to adopt better practices, and truly dedicating ourselves to a culture of medicine that follows the same advice it dispenses.

Yes, this is certainly easier said than done. But as daunting as the task may seem, we aren't heading into the dark alone. It's been done before. We aren't the first people to face this challenge.

The airline industry understands how to learn from its mistakes; it has a firm grasp of best practices for accident avoidance. Pilots, aeronautical engineers and flight attendants develop those practices from examining data about past plane crashes.

Regardless of scale, total damage or mortality, federal investigations reveal the exact series of events that precipitate each crash and provide a methodical account of what went wrong. Crashes are not shameful moments swept under an emotional rug; they're teachable moments that are examined, diagnosed and learned from.

I understand that airplanes and arteries are vastly different systems. I'm not trying to equate a plane crash with a botched diagnosis -- what's important here is the approach to error. The airline industry has understood, internalized and implemented a system that recognizes human and mechanical failures as important lessons and opportunities for improvement.

The Collaborative Chronic Care Network (C3N) is a project that catalyzes improved patient care. Chronic illness management is driven by the same lessons that Dr. Goldman and the airline industry have brought to light. Dr. Richard Colletti, a C3N collaborator, explains that "the care that a patient gets is not just dependent on how good the doctor is or how much the doctor cares. The care is dependent on the system that the doctor works in."

Dr. Colletti sees medicine as an ongoing learning process, where patients and care providers actively help each other find solutions on the journey to wellness. This openness makes collecting empirical medical knowledge less of a Herculean effort -- it encourages and even facilitates data and care collaboration among networks of doctors.

C3N implements this approach with real action and systemic change.

They note, "By combining large data registries and making them accessible and interactive, it drives action and innovation to create a more reliable and accountable care delivery system for children and their families dealing with chronic gastrointestinal diseases. And with an open-source framework, the project is developing a means to overcome barriers that involve concerns about intellectual property, data sharing and privacy, and medicolegal liability."

Perhaps, then, a new generation of doctors can eliminate the culture of walled gardens. More and more, we hear experts discuss the same kinds of shame addressed by Dr. Goldman -- the healthy shame that can be dealt with, and the unhealthy shame that shakes you to your core and drives change. Transparency in the doctor's office and a culture that accepts and learns from its mistakes should be a priority for medicine.This system is not just a great idea or an interesting experiment; it is a thriving solution that's changing the lives of patients everywhere. Dr. Colletti has reported that, because of the C3N methodology and practices, 10 percent more children with Crohn's disease are now in remission.

*I'm working with Cincinnati Children's Hospital to bring the C3N to Cystic Fibrosis and improve our outcomes too!

What you can't get out of, get into wholeheartedly

Every single night around 9:30 I swear that I am going to bed early. Then 10,000 little things come up and before I know it it's midnight. Tonight is no different. Tonight is Halloween, otherwise know as my birthday's eve. I took the kids trick-or-treating. I ate my weight in Milk Duds. I edited some pictures that I had taken last weekend. And now at 10:30, I sit at the computer answering emails that I had meant to respond to earlier or ordering a gift for someone I've been thinking about or jotting down some thoughts on this blog. 

Yesterday was a great day. I had the opportunity to speak at our Finest Young Professionals Kick Off event. In the past we have been a sponsor family, assigned to a few candidates to offer a personal connection to the diseased and support through their fundraising journey. Sometimes the candidates would come over to meet Drew and be in contact with questions or needing encouragement. Other candidates we would never even hear from or see one time. This year, in an attempt to up the ante if you will, they are having the candidates set up an initial meeting with a CF sponsor family so that they can hit the ground running. At the meeting yesterday, J.P. Clancy spoke about the clinical side of the disease with Gary McPhail (two of our docs here in Cincy). I shared what day to day life is like and took the candidates on a tour of the hospital and answered their questions about the disease. You can see in their faces and through their words that they had never been to a children's hospital before. Before Drew was born, I hadn't really either. It's almost second nature to me now, being at the hospital, with how much time I spend there, both out of necessity and out of desire. But it's hard to see sick kids. It is impactful when you are trying to drive home how important the fundraising that we are doing is. I think that they got it. I hope that they got it. 

After that, I had lunch with Dr.Clancy and another doctor who is spearheading the C3N project that I am working on bringing to the CF world. If you are new here and haven't heard about C3N, you can visit www.c3nproject.org and under the Patient Intelligence hyperlink watch a brief video outlining what it is. Keep in mind that this network was created for the IBD community, but we are working to bring it to CF and other chronic diseases. It was a great meeting. We are working toward laying out the framework for CF community. I really enjoy being a part of this project and pretty much any project with Childrens hospital. It just seems so purposeful and like the right thing to be doing. I can't explain it great, but I do love it. My day at Children's wrapped up with my volunteer time in the NICU. There weren't a ton of parents there last night, but I spent a lot of time talking with the ones that were there. One family has been in there since June and though their attitudes are positive and their spirits high, you can see that it is just wearing on them. I hope that they will get to go home soon. Another family has a brand new baby and just started on their CF journey. I wanted so strongly to share the message of hope with them and I hope that they were able to get that from me. It's hard at the beginning, and there are still times when I get down about CF. But life for me got a whole lot better when I accepted it and decided to fight for it instead of against it. I saw a quote the other day that couldn't be more true for what I have done. It was this: "What you cant get out of, get into wholeheartedly." I'm on a mission baby and I like to get my way. 

I should take this opportunity to go to bed. It's late now. I got my thoughts out. Hoping that tomorrow is a good day.

- Posted using BlogPress from my iPad

A little bit about the NACFC for the CF newsletter

A few weeks ago my husband and I had the opportunity to attend the 2012 North American Cystic Fibrosis Conference in Orlando, Florida. Nearly 4,000 doctors, researchers and other clinicians from around the world came together to share their latest research and use one another to better their clinics and improve our lives.  

As you may know, Kalydeco was approved earlier this year.  Kalydeco is a breakthrough CF drug that has dramatically improved the outcomes for about 4% of CF patients.  At the conference, doctors and researchers explained their plans and the message was clear - they feel closer than ever to bringing life-changing breakthroughs to all CF patients.  There is still a lot of work to be done, but there were thousands of people at the conference who will not stop working until they have achieved that goal.  I heard determination from brilliant scientists to continue developing new therapies until 100% of the CF population can see benefit from them. There was confidence that a cure will be found. 

While the search for the cure was and continues to be the foremost goal in everyone's mind, there were dozens of sessions focused on making life better while we wait for that cure. These sessions covered topics from new and emerging therapies to infection control guidelines to understanding and improving adherence. I heard many talks about the vicious cycle of inflammation, infection and obstruction, in both the airways and the gut. I sat through session listening to all of the new and upcoming studies using social media to better connect either patients to other patients or patients to their doctors. There were people who had made it their mission to improve healthcare outside of the clinic by providing patients with a card that allowed clinicians who were less familiar with Cystic Fibrosis to properly care for them. Doctors and scientists presented cases both for and against the use of regular CT Scans in CF.  Respiratory therapists discussed what was working with the current neublizer systems and medications and how newer, more efficient machines and different forms of medications could help to alleviate the time burden already weighing heavily on people with Cystic Fibrosis.  There was a clinic that had streamlined the process for starting antibiotics once being admitted to the in-patient floor.  I heard about the latest studies of a new drug, VX-809, and how it will help people with the f508del mutation.

Even as we all wait for "the cure," it was clear that caregivers are working with new and existing therapies to improve outcomes today. Things are changing very fast, and nobody has all the answers.  Still, sitting through all the sessions, we got to see caregivers from across the country sharing stories and research results, to find those answers.  We also saw just how much of a role we all have to play in helping them.  Even the best doctors don't know as much about our kids as we do - they rely on our input to know what is working and what isn't.  If the burden of treatment is too much, or if treatments are causing more problems than they are solving, they need us to tell them.  If we have questions about medications or therapies, we need to speak up and ask. We need to work together with the medical professionals caring for our kids. They need us as much as we need them. 

It was such an honor for us to be able to attend this amazing event. It was inspiring to see how hard so many people are working to cure this disease. It encouraged us to continue being involved - working with our clinicians, participating in research studies, volunteering at fundraising events - as the results will directly benefit our son. 

I was asked to write up something for the newsletter for both our local CF clinic and the CF Foundation about our experience at the NACFC. I've sat down several times now to get something started and I draw a blank. Not on what went on at the conference, but what to tell people about. I guess I could list out all of the wonderful sessions we went to or pull out the highlights. I could go through my notes and lay out the questions that I had before I went in and all that I learned over those three days. I'm just having trouble doing it. Little bits and pieces come to me when I'm driving in the car or in the shower, but as soon as I open the computer I'm at a loss. I've got one week to get it together. Wish me luck!

Drew has started coughing a little bit again. It started last week when we got home from Disney. I assumed that he would probably pick something up down there, or in one of our rest stops along the way. I took him in for a Viral Panel and Respiratory Culture this weekend. The viral panel came back neg and we are still waiting on the culture results. Cue the anxiety. Hopefully its nothing. I'd love to see this kid just get a cold and get over it. He's not coughing a lot. There is no runny nose or sneezing or anything like that. But he's not eating again either, and that seems to indicate a problem. I guess we will just have to wait and see what the culture shows. Fingers crossed for nothing.

I might be the only mother in the country who hasn't got Halloween costumes for my kids yet. I have no clue what the twins will be, or Jake for that matter. In all likelihood, Jake will be asleep long before the kids even go out for candy. Ella wants to be Doc McStuffins from the Disney Channel. I bought her a lab coat and when she tried it on got all bent out of shape because it didn't look enough like Doc McStuffins coat on TV. She's a real treat lately :) I better get my act together, as we have a costume party to go to on Saturday!

This Friday night is Run Like Hell. We don't run, but do enjoy volunteering down there to see all the great adult costumes. Naturally, its 70 degrees here this week and the high on Friday is something like 45 with a great chance of rain, so that should be awesome. Its for a good cause ;)

Finally, in case you haven't had the chance to check this out - CF care habits are important for people to follow as they are striving to stay healthy. In a brief video at CF Living, hear from CF patients, caregivers and experts who share tips on treatment schedules, good eating habits and the importance of exercise. Its a pretty cool website all around. 

More to come on the conference, as soon as I lose this writers block!

Establishing Healthy CF Care Habits

Coming out of the NACFC, I have to say that now more than ever, spreading awareness and sharing information is paramount as we near our cure. CF care habits are important for people to follow as they are striving to stay healthy. In a new brief video at http://bit.ly/R5AVzo, hear from CF patients, caregivers and experts who share tips on treatment schedules, good eating habits and the importance of exercise. Check it out and share it with your friends, family, caregivers, whoever! The impact that these videos have is bigger than you think. Just to give some background on previous videos I've shared, specifically, “Accepting and Living Your Life with CF,” here is some feedback received by folks over at CF Living :

·         “Ali Christenson's story really helped me because she talked about roommates and college and how she handled that, and that is the point I am at in my life right now. And I am actually going to the school that she went to so I know that if she was able to handle it and her roommates accepted her then most likely mine will too.”

• “My 2 1/2 year old son has CF, it has taken over my life, and I am not coping well.  I don’t want to pass on that attitude to him.  I pray that he will embrace CF as well as these young people have, and that starts with my attitude. Thank you for sharing your stories.  I admire your strength and spirits. God Bless you all.”

·         “This video taught me that you don’t have to hide your cf from others, but to allow acceptance from others.”

This new video on establishing healthy CF care habits features:

·         Ronnie Sharpe, CF patient, author of RunSickBoyRun.com and co-founder of CysticLife.org;

·         Isabel Stenzel Byrnes, CF patient, social worker and co-author of The Power of Two: A Twin Triumph of Cystic Fibrosis;

·         Kat Quinn East, CF parent and founder of the Blooming Rose Foundation;

·         Jacob Greene and Casey Greene, CF patients;

·         Emily Schaller, CF patient and founder/president of The Rock CF Foundation;

·         LaCrecia Britton, CF Coordinator, RN and CPNP.

Check it out!

The one where I start to write about our trip

I don't even know where to start. I'm still on such a high from the events of this past week. It all started with a 16 hour drive (that went surprisingly well!) last weekend to Orlando. We got to the resort we were staying at around 4:00 on Sunday afternoon and plotted out our Disney adventure. Monday morning, we loaded up the car and headed to the Magic Kingdom. It started off something less than magical. We waited in line for 30 min to meet Tinkerbell, which ended up being one of the highlights of the trip, but starting off with a 30min wait was taxing on interest and attention of our 4 small children. Excitement started to build after that, and continued with a ride on Aladdin's magic carpet ride. The next stop was Pirates of the Caribbean, which quickly induced both fear and panic and had everyone wanting to go home. It was 10am. Throughout the rest of the morning and early afternoon, our time was split between waiting in lines to meet characters or go on more age appropriate rides. They were all really enjoying themselves but they were beat. We made it to the parade at 3pm and then headed home, exhausted. They are all a little too young to really understand all that was going on. I can't say that we saw sheer excitement in anyone. It was more of bewilderment and confusion filled with some laughs and smiles.

The second day of our trip took us to Hollywood Studios. Disney Junior resides here and we probably could have sat and watched that show a dozen or so times before anyone really got tired of it. We did the Toy Story ride, saw Beauty and the Beast, the Cars Stunt Show and visited with Sully and Mike from Monsters Inc. Tuesday also ended with a parade, definitely a high note for ending a hot day at the park.

On Tuesday night, my parents flew down to meet us and joined us at Animal Kingdom on Wednesday. The Safari was pretty neat to go on. We met Pooh, Tigger and Eyore and also enjoyed a character lunch where Goofy, Mickey, Donald and Daisy visited with us while we ate. We decided after lunch that we wanted to head back over to the Magic Kingdom to wrap up our trip. After $45 worth of balloons and $150 worth of hats and stuffed things, we watched the parade, met the princesses, and called it a trip. Everyone had their favorites, but the parade each day was top of the list for everyone. The whole trip was exhausting but a lot of fun and we have tons of great memories.

Then came the North American CF Conference, otherwise known as the primary reason for our trip to Orlando. It was so amazing. There were dozens of sessions going on at all times over the course of three days and we couldn't go to all of them. We picked out everything that we found to be most interesting and divided and conquered. I thought that much of it would be over our heads, but it wasn't. It was definitely mostly scientific, with doctors and researchers presenting the results of different studies and projects. I haven't even unpacked yet, but once I have the chance to go back through my notes and the program with everything that was covered I will definitely have more to say and share. I tweeted the sessions I attended and some key things that I heard @ekeeleymoore for anyone who cares to check it out. I already put a pitch out on Twitter for a sponsor for the 2013 conference because I would love to go back.

Alas, I must get back to reality and do some dishes and wash and drive the bus to and from school. Hopefully the excitement from Disney and the conference will stick with me for a while...at least until the holidays get here :)

They made it right!

Well, I wrote the letter to CVS Caremark, posted it on Twitter, got a response from them apologizing for the trouble and asking for my contact info, had someone contact me, and got the medication in time for vacation. I was very pleased and impressed with their commitment to correcting this problem and ensuring customer satisfaction. And while I got everything that I needed for Drew to go on vacation, the bigger issue still remains. CVS Caremark is going to call me again next week once we return home to work out the overrides that I need for our other medicines and get everything sorted out for me. But why did it have to come to this? Why, for 9 months this year, did I have to spend hours on the phone explaining myself to customer service rep after customer service rep after manager after doctor and nurse and receptionist, etc., EVERY FREAKING MONTH! Why is there such a major disconnect between people who should be working together (doctor, patient, pharmacy, insurance). Taking the patient out of that group leaves everyone with nothing. So why not include us to figure out how to make it work for everyone?
I think that I am a rather outgoing and often outspoken person. As frustrating as all of these phone calls are, I am relentless until I get what I want (or a close-enough alternative). Many people do not feel empowered enough to do that. Many people simply don't have the time. There are a slew of reasons that other folks might not take the same steps that I do. And the sad part is that their kids suffer for it. But it's not their fault! I don't know whose fault it is really. I guess a little bit of all parties involved. When insurance companies create their policies and pharmacies create their policies and doctors write their prescriptions everyone should be working together to ensure that systems work. There shouldn't be these hiccups and kinks in the process. Maybe they don't realize it's happening. I'm certainly not mad at the person on the phone filling my prescriptions. I may take my frustrations out on them, but they are just doing their job. I don't know what the answer is. I'm happy that my problems were addressed and taken care of. I'd love it if it were a permanent fix, but alas, work will change insurance companies or policies at the current company will change or my file will go missing as it has before. I wish there was a way. I'm going to make this a priority with our Quality Improvement team as we transition off of our current initiative because I know that we are not the only ones who suffer these monthly headaches.
So thank you, CVS Caremark, for righting your wrong. I appreciate your timely help, as it will allow me to enjoy our vacation knowing that Drew has the medications he needs. And if you have interest in further collaboration, you know how to reach me!
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