Thursday, December 27, 2012

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 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

Thursday, December 20, 2012

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.

Wednesday, December 19, 2012

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 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 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!

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 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 ;)

Tuesday, December 11, 2012

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 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 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. 

Monday, December 10, 2012

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
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.

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 sitesincluding at Cincinnati Children’s Hospital Medical Center, and a reduction NIH funding could have a detrimental effect on this research.

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.

Saturday, December 8, 2012

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". 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, they paused and asked some questions and seemed truly intrigued. We're getting there!! I want to talk more with 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., 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 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'.

Thursday, December 6, 2012

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

Tuesday, December 4, 2012

Oh heck yeah!!

Just yesterday, someone asked me if I had heard from, 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 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!!! Here's what it said: We've been really impressed by your persistance and enthusiasm for, and would love to set up some time to learn a bit more about you and tell you more about 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!!