Sunday, December 26, 2010

Quick Health Update

We all got to spend Christmas at home!! The combination of steroids and antibiotics has seemed to improve things. Drew still has his moments where he seems to struggle greatly to breathe but nothing near as desperate or worrisome as a few days ago. The plan was that if he had gotten worse we would be admitted to the hospital, or if by Tuesday he hadn't gotten any better we would admit him to the hospital. We're not totally resolved but hopefully we're on the right path. We'll talk to the doctors tomorrow to see what they think and take it from there! Hoping for a happy new year!

Thursday, December 23, 2010

2010

Its Thursday night. Christmas is Saturday. Life is not quite as holly and jolly in the Christmas spirit as I had hoped it would be. Ella went to bed last night without any of her "guys". She doesn't listen. Ever. And I'm sick of it. I know she's 2, but i'm a good parent and I'm determined to raise the girl with some respect. There are a number of behaviors we need to work on changing, but listening is by far the most out of control. She's TWO for crying out loud and shes got more willpower than anyone I know. She gets threatened. She gets time outs. There are consequences. But in the end it feels like we are always the ones who end up feeling bad and making excuses for the way she behaves. After all, shes a direct reflection of my parenting skills, right?

We watched a lot of TV today. No one here feels good. Everyone has terrible colds and no one is sleeping well. Drew's health is questionable and no one really knows why or how anything he catches is going to affect him, beside negatively of course.

I hardly got anything for the twins for Christmas. We already have so much, plus they don't really know. Santa will have something (4 items to be exact) for each of them under the tree so that Ella can see that he brought gifts for everyone, but thats about it. Martin and I didn't get each other anything either. Well, a few odds and ends - new coffee mugs, a rice cooker, some socks and the standard toothbrush in the stocking. We don't need anything, and frankly what we want doesn't even really even come into consideration anymore, what with all the other needs we have, respectively named Ella, Lily & Drew.

Gosh its been such a crazy year. In January, I remember thinking, "I'm HUGE!". I remember going all kinds of places with Ella - out to lunch with friends, the museum, the zoo, music class, story time. We were best buds, Ella and I. I could not imagine a more perfect world.

In February, I recall thinking to myself, "There is no way these babies will be in me until April. I later realized I was right.

On March 13, around 1am, I started having contractions. Martin, who had long since moved into the guest room, was notified around 5am. I wasn't really in pain or anything, but I was definitely having pretty regular contractions that weren't going away. Two days prior, after every test under the dun & no centimeters dilated, I was told that I might actually carry these babies to term. We got to the hospital just before 7am and I was 4cm. I was 35 weeks and 6 days.

Almost 24 hours after my first contractions at 1:45am on the 14th, my beautiful Lily came out screaming. We learned that this would be her defining characteristic for about 9mo. Around 3:30am (2:30 actually if you don't count daylight savings that happened) the docs went in after Drew. My little 5 pounder came out with a shriek as well. Two new babies - a boy and a girl. Twenty four hours of labor. My wonderful little family was now 5.

I held them both so close. They were so tiny but I still couldn't believe that they were both inside of me just hours ago. My Ella came to see them. I couldn't imagine a more perfect world.

Then came the lack of poop, emergency transport to Children's, Drew in an incubator, Lily at home without me and just 2 days old, a Baptism in the NICU, a kiss goodbye before surgery, a tight embrace after surgery, repeat, a diagnosis, 31 days at Children's, my whole family at home, a leaky ostomy bag, Drew back at Children's, Ella's second birthday, my whole family home again, Drew back in the hospital, a formal baptism and birthday party, good news, bad news, back in the hospital, heart surgery, Ella starting preschool, back in the hospital, back home, a family trip to Philly, a Thanksgiving with just the 5 of us and WAY more food than we needed, colds for everyone, many trips to the doctor and urgent care, wrapping Christmas presents, praying we all get to celebrate Christmas together at home, even if there aren't many gifts to open.

There is so so much more about this year that I both loved and hated. I love how much time we got to spend with our families. I hated the reason. I loved the outpouring of support we received from friends. I hated the distance from others. I loved watching Ella grow and learn and love her new brother and sister. I love the admiration in their eyes when they look at her right before she steals their toy away or knocks them down. I love our cleaning ladies. I love how much more I know. I hate how much more I worry.

I remember sitting in the hospital those first few weeks thinking, "This changes everything. I'll never be able to go out and have fun anymore; there's something more important." I felt selfish for going to get my hair cut shortly after Drew got home from the hospital. I remember thinking, "Things will never be the same." But I know now as I look back that sick baby or healthy baby, things weren't going to be the same anyway. We have our new ways of doing things, but we're still the same people. This year may have changed me a little (ok, a lot), but so what?! Maybe this is who I was supposed to be all along. Are there days when I wish that we didn't have to do all of the shit that we do on a daily basis? No doubt! Are there days when YOU wish you didn't have to do all the shit that you do on a daily basis? You'd be lying if you said no.

This year I've had more people that I can recall tell me what a great job I'm doing and that they could never do what I am doing. But you could. I always thought the same thing. When you're in it, when its you, you just do it. When you love, you just do it with your whole heart. When you cry, you cry hard and real. When you have kids they just are a part of you and you just do it. You kiss and bandage imaginary boo boo's. You give out hugs like you use to give out unsolicited advice and opinions on shoes or TV show's or the latest office gossip. You just do it and no part of you can imagine not.

When we got the word that this thing called Cystic Fibrosis was going to be a part of our lives way back in March, for many weeks and months I think that I feared the worst. I feared losing him. Its not that I don't ever think about that anymore. When you're faced with a terminal illness, its hard to avoid talk of things like "life expectancy". I don't really think about it anymore. With every step forward or ever step back, I just have to keep looking ahead - ugh, the hospital again, okay so what's the plan, what do we need to do. I don't plan his funeral or imagine a Christmas without him. I can't and I won't live like that. He's my son just like Ella and Lily are my daughters. It someone gets sick, we wipe noses, administer meds and keep on truckin'. I can't explain to you when or why or how it all happens, but its just how my life goes. Fighting CF is at the top of our list of things to do, but its just a part of our life, its not our entire life. The second that I cry about it, the second I treat him differently, the second I let my imagination take over, I've given in. I have my moments, but there's so much I miss when I get stuck in those moments that I've been able to overcome them and just live my life.

What would be most awesome for 2011 is the continued support of family and friends. Walk with us in Great Strides. Attend a CF benefit in your town. If you stumble upon a few extra dollars, consider making a donation. The CF Foundation is SOLELY responsible for the advances in medicine and treatment and is supported by us alone. One child dying everyday from CF doesn't qualify as important enough for government support, so its up to us. I started this blog to raise awareness and support for Cystic Fibrosis because without it there is no hope. If just one person reads our story, if just one dollar finds that cure, if it buys us just one more day, then to me its been worth it. I hope you keep reading in 2011. Peace out till the new year!

The Plan

Things change so quickly. On Monday we got a clean bill of health from the CF docs. Drew was just starting to get the cold that the rest of us have and sounded atrocious, but his lungs were clear. Now, 3 days later, hes retracting when he breaths, pulling in around his ribs and his nostrils are constantly flaring. Hes coughing so much to no avail. I took a video of him and sent it to his docs so that they could see his obvious breathing distress and we finally heard back with a plan...

All of his cultures came back clean which is great. So more likely than not what he's got is a virus. Its not a CF related thing, but his weird small lungs (which I promise to post pictures of and better explain soon) aren't able to handle the attack. Since he seems to be getting worse, there is concern that some bacteria is starting to grow. We're starting him on antibiotics again today (he was off for almost 36 whole hours!!). If he gets worse - doesn't want to eat, seems to be in true distress, only wants to sleep - we go to the hospital to get admitted for IV antibiotics. If he has not changed by Tuesday we go to the hospital to get admitted for IV antibiotics. If he gets better (please pray he gets better) then we are home free. I would love to not have to get admitted at all, but if we do have to I hope that its not until after Christmas. Will keep the blog up to date on his status.

Tuesday, December 21, 2010

I'm tired

Everyone is sick and I'm exhausted. Ella sounds atrocious but her fever is gone. Lily has an ear infection and an upper respiratory infection. Drew can't stop coughing and we're waiting on the results of his throat culture to make sure there's nothing terrible going on down there in those weird little lungs of his. I feel like my head might explode and could very possibly lead Santa's sleigh with the color of my nose, but haven't had a moment to get to my doctor. I'm hoping we will all be getting over this very soon, but am worried that at least one more of us will be on antibiotics before all is said and done.

We saw his CF docs yesterday and went in with a list of questions. Its not that I'm unhappy with how things have been going, because all things considered, hes doing alright. But theres so much uncertain and unknown about CF and how unique each person who has it is and I just had some questions. What are the long term effects of having him on so many antibiotics? How long do we plan to keep him on them, until he sounds better? Is he on more antibiotics than the average CF baby? Most CF kids aren't on Pulmicort - does he need to be? What's the plan for the next bronch? What are they looking for? What are they hoping to see? What if they don't see what they wanted to? How important is it that this happens? Is there any concern about developmental delays because of so much time spent doing treatment. Whats critical to get in in a day? Our daily schedule - he only really has about 3 hours of "free time" vs. Lily for example who has about 6 - she's crawling, he barely uses his legs. How sick is he? Am I naive thinking that hes doing alright? Given the malacia are we being extraordinarily careful? Is he more succeptible bc of the malacia? Will he definitely get over the malacia? With all of the new drug therapies in the pipeline, if one of those drugs addresses one of his two mutations (delta F 508) will that be enough or do both mutations need to be "fixed" for the visible signs of CF to go away? How are we doing?...just to name a few.

We got good answers to all of those questions. I could probably write a book if I tried to write out an explain all that we discussed, but it was all positive. The hard and frustrating thing is that a lot of it is just unknown. We know that the malacia and the strange structure of his lungs aren't helping him any, but its unclear whether or not they are directly hurting him. The next bronch, scheduled for February, will help to determine if things are changing. They are expecting to see the same or improvements from what they saw last time. At some point we will do a hi-contrast CT scan to see if he has any lung damage. We hope beyond hope that there is none yet, though its inevitable that it will come at some point. We're stopping antibiotics...for now. The past 6 weeks on three different kinds hasn't really changed anything much, but now that hes got this new cold hes actually worse so we'll see what the culture shows and take it from there.

The answer to my question about being naive about his condition was answered just the way that I had hoped. While he has spent time in the hospital and on antibiotics, most of what has been going on with him is not directly related to him having CF. CF complicates the whole thing, but your average joe with CF doesn't exhibit a lot of what is going on with Drew. Its malacia, and its the artery on the trachea issue, and its the abnormal anatomy of his lungs. The CF makes all of these other issues complicated, but without the CF they would still be in the picture. He's a big boy - 22lbs at 9mo old. He's breathing well. He sounds awful but hes not sick and thats a good thing. So I'm not being naive. He's doing alright. Could things be better? Of course they could. But they could also be an awful lot worse.

I'm hoping to hear back on his sputum culture today or tomorrow or Thursday at the latest and I'm hoping that its good news. I'm also hoping that my head doesn't actually explode and that my children start to feel better so that we can all get some much needed sleep. I'm hoping that everyone taking the time to read this realizes how much it means to me that you care enough to check up and I wish you all the best this Christmas and always!

Saturday, December 18, 2010

Sick & Tired

I'm pretty sure that I've started more than one post this way, but Drew's sick....again. Hopefully its nothing, but it always gets me nervous. He woke up this morning and just wasn't himself. Very lethargic and cranky, both things that he is typically not. He ate his bottle and then started coughing so hard he threw it back up. He lounged around, head on my shoulder all morning, and then went down for a nap. When I heard them wake up and went to get them, Drew didn't even want to pick up his head. He had a fever of 101.4 and sounded awful. I decided it was time to call the doctor. He's getting vaccines to protect him against RSV but I was fearful that thats what was/is going on. I spoke with the pulmonary doctor on call at the hospital and based on my assessment they feel that hes just got a virus. We're just going to keep a close eye on him and if breathing becomes quick or labored we're heading downtown. Ella was sick with it on Wednesday, and i'm not feeling to hot today. But its just different when someone with chronic lung troubles gets the same "cold". We gave him some tylenol and he slept the afternoon away, and woke up feeling much better. We'll see how he is when the tylenol wears off. We hope its just a virus, but there's always the worry that the virus that causes some extra mucus will turn into a bacterial infection. Luckily (I use that term loosely) he's already on antibiotics so hopefully they will ward off the bad until this "cold" passes. I guess we shall see.

Wednesday, December 15, 2010

Christmas Wish

Before you watch this, scroll all the way to the bottom of the screen and pause the music player so that you can hear the audio in this video.

Monday, December 13, 2010

Schedules to keep

The Early Intervention people were here this morning. Last month they had given us a few things to work on. First, trying to get the gagging to stop and get Drew more interested in eating. Funny if you consider his size. With some suggestions from an occupational therapist we were able to complete that task. The second thing we were working on was strengthen his legs a little and making him more mobile. The boy will jump up and down like crazy in a jumparoo but won't really put any weight on his legs if you hold him up. Hes not behind the curve, but Lily is nearly walking so in comparison I think I'd like to see him a little stronger. We did all kinds of kneeling exercises and different positioning and toys to try to get him to stand a little bit here and there, holding onto things of course, and in a month he improved quite a bit. Hes still not the strongest guy on the block. Physically anyway :)

So they were here again this morning and we were talking about his improvements. The Developmental Specialist asked if he spent much time doing breathing treatments or airway clearance. Um, YEAH. Its like 2-3 hours per day. She made a great point -that 2-3 hours per day that he spends sitting in one place doing his treatments is time that Lily, for example, spends rolling around, playing with toys, exploring. And that put a big question on my list for Drew's docs. How can we better balance this? This is our current schedule (roughly):
7am - Wake Drew up to do his treatments
8am - Finish treatments, eat bottle, eat breakfast
9am - Nap
11am - Wake up, bottle.
12pm - Lunch
12:30 - Treatments
1pm - Nap
3pm - Wake up, bottle
5pm - Nap
6pm - Wake up, dinner
7pm - Treatments
8pm - Bottle, bed.

If you look closely, there is really only maybe 3 hours of awake time that is "free time" for Drew these days. Compare that to Lily who has more like 5 or 6 hours of free time. I'm not suggesting that all of the time we spend on treatments is impairing his other physical abilities, but there's gotta be balance, and more of it, I think. But breathing is more important that walking. He is only 9mo old, so I'm certain I'm jumping the gun here, but the talk got it into my head and I want to make sure that I'm balancing this all okay. And not even just his schedule, but everyones. I think I try pretty hard to split my time between all of the kids. The morning nap is only for the babies, so I have some good Ella time for that two hours. Then when everyone naps in the afternoon I can get a few things done around here. I try to keep the TV off for most of the day, but turn it on when Drew is doing his treatments so that we can all watch Sesame Street together. It minimizes some of the complaining from the girls when I have to sit by Drew for the 30-40 minutes his stuff takes.

We do whatever we need to to keep Drew happy and healthy, but a big part of that is keeping the whole family happy and healthy. We'll see if we can better weigh out what needs to happen to Drew each day and when against the fun stuff that also needs to happen.

Sunday, December 12, 2010

Whats news here? Not much. The Omnicef seems to be helping with Drew's sound (I say sound because its not really a cold. No one knows what it is really other than some extra mucus presumably caused by some bacteria). Its either than the Omnicef is really finally doing the trick, or its just the 5th straight week on antibiotics finally kicking it. The reason we stuck with antibiotics is partly because the doctors are starting to think that because of the abnormalities in Drew's airways, when he does get some bacteria causing trouble it just takes a really long time to get it out. But persistence is key. I'd rather be on antibiotics for a couple of months and get rid of it than deal with it and end up with some lung damage. We switched antibiotics a couple of times too so that he doesn't start building up resistant.

I think that some people think that because he sounds the way he does that he's sick. He is in a way I suppose, but not a way that could get anyone but another CFer sick. The bacteria thats in his lungs wouldn't make it to your lungs or my lungs. Regardless of whether or not hes on antibiotics, you can't "catch" what hes got. For you or I, if we get a cold there might be some coughing, maybe a runny or stuffy nose and within a couple of days we're over it. For Drew, theres coughing, theres increased mucus. You could catch a cold from him just like you could catch a cold from Joe Schmoe, but the lung infections aren't passed on. We cough, you and I, and it rattles the bacteria filled mucus and we cough it up and clear it out of our lungs. Drew coughs and rattles the mucus, but because its so thick and sticky the bacteria sets up shop. When he coughs it up, some of that bacteria stays put. Thats the problem. You can't catch what he has.

Its still weird to me thinking of him as a "special needs" kid. We work with Early Intervention in Cincinnati. Its a free service provided by our county that pairs us with a developmental specialist to track him until age three when hes turned over to the school district. He doesn't have any "developmental disabilities", but I'll take a free service when I'm offered one. They basically just come over once a month and watch us play, ask if hes hitting different milestones, and ask what they can do to help. And occasionally they bring us a book. They're nice enough people so I don't mind them, and if something does come up at some point (for example speech delay or the need for some sort of physical therapy or occupational therapy, unrelated to the CF whatsoever) they will provide that service to us free of charge. That beats dragging the whole family to the hospital to meet with whoever we need to. CF qualifies as a disability eligible for the Early Intervention services, so we took them. But when they talk about him as a "special needs" kid it still seems weird.

I do spend some time talking about Drew and CF and our experience with it on the blog, but I think I also try to just focus on our life. So there is a special needs kid in our family. So what. I want to show people that our life is just as good theirs is. We don't dwell on the CF. We deal with it. It doesn't consume our lives, though its a big part of it. There are plenty of happy times. There are plenty of scary times. Hopefully we will have more happy than scary going forward.

This is another one of those blog posts that I started in my head days ago and can't remember what I was thinking or wanting to write. It seems anymore that until we get the kids to bed, whether it be at naptime or bedtime, and the house cleaned up and the dishwasher loaded and the clothes folded, and the online shopping done, that I'm tired and just want to drink my coffee and sit around doing nothing. I'm hoping to be better about that all in the new year. I'm hoping to make an effort to write my thoughts out on here. I'm hoping to change some of my behaviors, like putting down my cell phone and focusing on the activity at hand, be it cleaning the kitchen or making snowmen out of playdoh. I'm hoping to be a better listener, to find time for what's important, and be a better person. This year alone has changed me. It has made me a better person. I know that this is my calling. Drew was made for me and I'm gonna fight the good fight. But I really want to be a better person. I want to educate others. I want to raise funds for a cure. I want to be a part of something bigger. Oh yeah, and I wouldn't mind losing a few pounds. Going to be a busy 2011!

Thursday, December 9, 2010

The list goes on

All of the kids are asleep and I just went downstairs to "Santa's Workshop" - aka the bathroom in the basement - to take inventory. There's no real big gift this year, but there are lots of little ones. As if we need more toys in this house! Last year we went overboard with bigger gifts so anything that would probably be on the list for this year has already been bought. That's okay with me. We don't need anything else big. And in fact, we're donating some of our toys that we don't really play with for other kids to have something for Christmas. I asked Ella to pick through all of her guys - aka stuffed animals - and see if she could find a few to share with other little boys and girls. She pulled a few out. When everyone goes to bed one of these nights, I'll do a little more sorting.

We have a lot to be thankful for this year. We welcomed two new babies into our family (can't believe they are already NINE MONTHS OLD!), went through 4 successful surgeries, got to spend lots of time with grandparents, enjoyed many laughs with and at the expense of Ella, and the list goes on. Its still funny to me how little people really understand about all that we've been through and will continue to go through with Drew. At the beginning, it would frustrate me when people didn't understand, but now I don't care. For many months, CF was all consuming of our lives. Now, its just a part of our lives. Its a big part and we will continue to grow and learn more about the disease and life with it, but it doesn't define who we are.

I read a blog today that made me want to do more. Its a different cause, not Cystic Fibrosis, but another cause that could use your support this holiday season. Click on the picture below of baby Cliff to learn more about it.

Wednesday, December 8, 2010

Family Photos

For my 30th birthday, Martin got me the thing I've been asking for since Ella was born - family photos! We had them taken a couple of weeks ago, and I'm finally ready to share a few. I love them. Thanks Martin!






Tuesday, December 7, 2010

Omni something

We're still on antibiotics. We just switched though to something different since the one we were on for the past two weeks didn't seem to do anything. I think I mentioned it before, but they are starting to feel like a longer course of antibiotics would be more effective for Drew because the malacia really seems to make this cold-like sound linger for quite some time. He was on something back at the end of October for 2 weeks. We finished that and about 4 days later got put on something new. He had started to sound better, than without the ab for 4 days seemed to get worse. So we got back on another antibiotic, the one we just ended yesterday, but this time nothing seems to be changing. Rather than taking a break, we're going to continue with a new antibiotic called omni something or another that apparently covers a wider range of bacteria. When they culture him he shows very few staph, but for whatever reason we can't seem to clear him up. And the great debate continues - whether this is just malacia sounds or whether its malacia combined with an infection. I guess we'll see how the next two weeks go.

I've told a lot of people who don't see him often and ask how hes doing that if you were to just look at him you wouldn't know a thing was wrong. Now, if you hear him, you're pretty sure he's about to croak. He's doing great. I asked the CF nurse the other day on the phone if I was being naive to think that hes actually really doing pretty good, and she said not at all. She said that most of whats been going on is all complicated by the CF but its not typical CF presentation. Hes gaining great weight and we're monitoring his lung health so closely that if he were to catch anything bad we would know right away. The name of the game with CF is prevention prevention prevention. And we're on it.

Life has been pretty boring otherwise. We're finally into our groove with the vest. We actually got a wrap that looks like a giant blood pressure cuff instead of the vest because the vest was a little to big (and I admitted that we probably jumped the gun a little trying to get into a vest so young). But its working great and we're happy with the saved time. Hopefully we have an uneventful next few weeks in terms of the CF. We're ready for a doctor-free Christmas and New Year!

Friday, December 3, 2010

I don't think that was the problem, but it was a good answer

I know you've all been waiting for the compelling conclusion to the insurance prescription fiasco. I got the medications in the mail. All were a 30 day supply. That's right, every last one of them. Even the one that I specifically confirmed twice, before I hung up the phone, would be a 90 day supply. Even that one. I made how many phone calls between insurance and this specialty pharmacy to get these approved?

I called the pharmacy right away and expressed my frustration to the woman on the phone. She tried for a few moments to see what happened before transferring me to the rep who filled the order. When he got on the phone he told me that BCMH only allows a 30 day supply. So all of my calls to Anthem were for naught. Where is that lapse in communication? When I asked why I was only getting a 30 day supply, could they not tell me that BCMH would only allow 30 days? I spent probably a total of 2 hours on the phone between them and Anthem and all along it had nothing to do with either.

On a lighter note, I have a quick Ella story I need to share. She was in the playroom yesterday and I had brought the twins downstairs and stuck them in there with her and walked into the kitchen to make bottles. Two minutes later, both simultaneously started screaming. I went back into the playroom where Ella stood looking at me sheepishly. I said, "What happened?" and she looks up and me and says, "They missed you!".

Wednesday, December 1, 2010

This is how we do it

"But the other amazement in all of this is the instinctive initiation of the Fight receptors in the sudden surge of Fight-or-Flight that ensues when your baby gets sick or your kid falls off the top bunk or your toddler slips into the deep end with a quiet splash, or maybe you just received news that your brand new baby has a genetic condition that makes her different. You fight, without even knowing it. You rise to the occasion. You jump in, save them, wipe tears, call doctors, hold compresses, pull yourself together and you fight like hell. As "minor" in the world of parenthood snafus as our trip to the ER was, I couldn't help but recognize the fight that commences and the calmness that deploys. You just know what to do. You tell the What-if voices to shut the hell up, and you advocate for your child-- attentively, fiercely, fully." - Kelle Hampton, Enjoying the Small Things

And Lily's not happy about it either.

I spent another many hours on the phone with insurance yesterday. I swear that Anthem hires only incompetent people.

We got secondary insurance coverage from the state of Ohio under the Bureau for Children with Medical Handicaps. Our insurance is really phenomenal, and we met out deductibles and out of pocket max, oh, back in like April, but we still have co-pays for doctor visits and prescriptions. And we go to the doctor A LOT and use a LOT of prescriptions (by "we" I mean Drew). So the BCMH picks up all of those extras that are related to CF. So if we go to the pediatrician, we still have our co-pay, but when we go to see the CF doctors then there's no co-pay. I'm getting to my point.

BCMH will also cover our co-pays on all of Drew's medications, but only if we use the CF Services Pharmacy, an online pharmacy servicing only CF patients. But our insurance requires that we use their online pharmacy. So I had to call them to ask for an exception, allowing us to have our prescriptions filled through the CF Pharmacy. They pretty easily agreed. I called the CF Pharmacy and told them that an exception had been put into the system and I needed to place my order (which was going to cost me nothing!) and they said that a 30 day supply would be on they way. URGH!! I need a 90 day. The problem was that Anthem only approved an override for 30 days. So I call them back to try to get a 90 day and after being on hold for 21 minutes, the woman tells me they are having some trouble getting that approved and they'll have to call me back. Two hours later she calls back to say its been approved and the problem was that they were looking under my name and not Drew's, despite the fact that I gave them his birthday. Surely she didn't think I was born on 3/14 of this year. Whatever, we got it sorted out. So I call back to the CF Pharmacy because no one can do anything without you holding their hand, and we're all square. The woman asks me if its just the one prescription I need and I was like no I need these 3 that I spoke with someone about yesterday. Well, the order had never been placed. I asked what the confirmation number I had was for. Apparently the guy just made it up or something because they had no record of it. I tried to remain calm and just get everything ordered and before we hung up I said "Just to confirm, these are all for 90 day". She goes, "No ma'am, these are just 30 day, Anthem has not approved a 90 day supply." Really? REALLY?! Oh for the love. Fine, just send me 30 and I'll deal with you again in a month when I've gotten my patience back.

All of this time spent on the phone stressed me out. And Lily isn't happy about it either.


Saturday, November 27, 2010

100

I heard that when you post your 100th blog entry, it is supposed to be 100 things about you. Here goes!

1) I hate wearing shoes. You would never guess that from the number of shoes I own, but I'm barefoot 90% of the time.

2) I'm not a morning person. I can't wake up to an alarm clock (like literally, my brain mutes it out, I don't hear it going off.) I long for the day when I can sleep in again.

3) I love ice cream. Mostly vanilla. Actually, almost exclusively vanilla.

4) I have forgotten to feed the twins breakfast on more than one occasion.

5) I'm a total social networking junkie.

6) I miss living in Philadelphia. I like Cincinnati, but its never felt like home.

7) I've learned over the past several months who my real friends are.

8) I've considered trading in our queen size bed for two twins.

9) I am terrified of snakes.

10) I seriously think I have the cutest kids in the world. I know you all think you have the cutest kids in the world too, but I really seriously think mine are.

11) I love being a stay-at-home mom. I hate being called that though. I'm just a mom doing what a mom does (in my humble opinion).

12) I am a lousy housekeeper.

13) You will find General Hospital on my DVR.

14) I love baking.

15) I love my minivan.

16) I worry. I worried a lot before I had kids. I worry a lot more now that I have kids. I'm a worrier (thats why they call me whiskers. HA!)

17) A vanilla latte from Starbucks can make anything better

18) I was in the plays at my highschool all 4 years.

19) If I had it my way, my kids would be named Ella, Drew and Lily. For those unaware, their real names are Eleanor, Andrew and Liliane. I've considered a trip to the social security office to change them but don't think Martin would be to happy with that.

20) The only thing I really miss about pre-children life is fancy vacations. And the ability to be lazy on the weekend.

21) I've broken my legs more times than I can count. I broke them both at the same time once and was in a wheelchair. It was 1 week before my 21st birthday.

22) I can't whistle

23) I really really love my little family. I wish Drew didn't have CF, but other than that I wouldn't change a thing.

24) I'm not even a quarter of the way done this yet!

25) I love and appreciate both of our families more than they know.

26) Everyday you will find me in sweatpants and a t-shirt. And no socks or shoes. I only bother to get dressed if I have to go somewhere. I'm all about comfort over style.

27) I love the website Etsy

28) I can knit. Not well, but I can do it.

29) I do not like surprises. I like control.

30) I love surprising people

31) I wish I could record every moment of every day of my kids lifes so that I could have them at every age for eternity.

32) Every day gets better.

33) I have to admit that my teachers (and parents) were right when they said "Someday you will understand why its important to know this".

34) I have a lot of really great friends

35) I'm very brand loyal to ketchup (Heinz) and toilet paper (Scott). For everything else, the best price wins.

36) I wish I read more. I read a lot of blogs these days, but no books.

37) I wish I could call "Haulin' House" and have them move my house back to Pennsylvania. I think they have like a 3 mile limit. We blow that out of the water by like 550 miles. Oh well.

38) I also wish I had a free interior decorator and an unlimited budget. I think I have good ideas and this house has great potential.

39) I read a lot more blogs then I ever cared to. I never really did until I started mine, and I found some really fantastic blogs that I just love to read (like Enjoying The Small Things (make sure you click the "Start here if you're new" button), or MckMama just to name a few).

40) Ella calls Sleeping Beauty" Sleeping Nudey" and I haven't corrected her because I think its hysterical

41) I bought my minivan 6 months before I had my first kid. I love it.

42) My favorite mascara is Fiberwig. I love it. I found it in a magazine a few years ago and gave it a shot and its awesome. You should try it.

43) I use to love the fall the most, but now that I have kids and the fall brings fewer daylight hours, lots of runny noses, and weather to cold to go outside, I now love the spring (minus allergies).

44) I can't wait until my kids are a little older and I can take them to Disney World

45) I'm really excited about the carpet cleaner I'm getting for Christmas

46) I'm even more excited about seeing Ella on Christmas morning

47) I wish I had more time in my life to bake. I enjoy baking. Actually, I mostly enjoy people enjoying what I bake. Cooking on the other hand, I could do without

48) I secretly hope my parents will live forever

49) Gourmet Club is one of my favorite things to do every month. There's nothing gourmet about it, just a bunch of girls getting together for dinner at someones house, but its always a good time.

50) I have a ton of great friends.

51) The first wedding I was ever in, I was kind of the best man...or woman I guess.

52) If anyone has a hankering to buy me a gift, this is what I really want Love Touch Collection

53) I have a little photography business. I love that its little. I do what I want when I want.

54) For my honeymoon, we went on a 12 night Mediterranean cruise and it was seriously the most amazing trip of my life. I want to do it again someday.

55) I totally procrastinate.

56) I'm running out of things to write

57) I hope life turns out alright. So far so good (even with all the crap that went on in 2010)

58) It drives me nuts when people mispronounce things. Kroger has no S on the end of it. Across does not end with T. And there is no X in especially.

59) I am a Wheel Watcher. I have a Spin ID and every night hope they call it (except when the prize puzzle.is a trip to to like western NY. I wanna go to the tropics).

60) I prefer red wine to white. Except Cuvee Sauvage which is my all time favo wine.

61) Martin's dream car is a Cadillac. I just want a power hatch on my MV and I'll be happy.

62) I use to work for L'Oreal in Manhattan

63) I use bribery all the time with the kids

65) I skipped 64 because I couldn't think of anything to write. And its my blog so I'll do things my way

66) I'm a sleep talker and I never remember it. Martin has some funny stories though.

67) My all time favorite movie is....I don't think I have an all time favorite. I like the so-called "chic flicks". A good comedy also makes the top of the list. When Harry Met Sally is pretty high up there.

68) One of my favorite TV Shows of all time is the Wonder Years

69) I have terrible chronic back pain. I have some bulging discs, I have a tear in one of the discs. I get steroid epidural shots about every 6 months that use to help manage the pain, but they just don't do a whole lot for me anymore. I wish that would go away. I think I would generally really feel better all around if my back didn't always hurt so bad.

70) I know someone who does the crazy lights-to-music Christmas display and they live in San Diego

71) I knew the twins were a boy and a girl before they were born, but didn't tell anyone. I accidentally found out and was so bummed that we decided to keep it a secret. Having done it both ways now (finding out and being surprised), the delivery room surprise is a million times better.

72) I had to fill something out the other day and had to write "30". That's hard.

73) I'm not good with plants. I have a hard enough time trying to remember to feed children.

74) I floss pretty much everyday. I love the way it makes my teeth feel.

75) I'm not at all anxious for the twins to start walking. Frankly, when Ella had a broken leg and all 3 were immobile, life was kind of easy in a weird way

76) I'm a nail biter. I always have been. Its a nervous habit. I have a lot of them.

77) I would like to be a spokesperson for the Cystic Fibrosis Foundation and tell everyone our story.

78) I only wake up early for emergencies and good deals. Got a few good deals yesterday (black Friday)

79) I'm a coffee drinker. Cream only, no sugar.

80) I had two cats growing up and really bad asthma. I gave up the cats and my health improved dramatically. I'm terribly allergic to cats. And dogs.

81) I wish I could write a book of all the funny things Ella says

82) I love babies.

83) I don't drink enough water. I don't drink enough wine these days either.

84) I wish I had someone to do my hair every morning. I usually ends up in a ponytail because I'm to lazy to dry and style it.

85) I would like to have a little job working from home for a couple hours a day in the evenings, just for some extra $. Anyone?

86) I wish I had more time to blog. A lot of the blogs I read are sponsored and therefore the women must write x number of posts a day or week or whatever. I have no interest in being sponsored. I want to write what I want when I want. I just wish I had more time to because I kind of like it.

87) I had no clue how or why we landed in Cincinnati until Drew was born. Now I'm glad we are where we are, for now anyway

88) I'd like to buy the world a coke. Ok, I'm just running out of things to write about. But if I did buy the world a coke it would be diet and caffeine free.

89) I just donated a boatload of clothes to Goodwill. Its all stuff from my pre-kids days. I love it all and am sad to see it go, but the reality is I will never be that size again. Or if I am, it wouldn't be appropriate to dress like I'm headed out to the bars

90) I use to play volleyball and I enjoyed it quite a bit

91) I backpacked Europe with one of my best friends before we graduated from college. We had a ton of fun. (that's whose wedding I was the "best man" in)

92) I need a nap

93) I'm a pretty good negotiator. At least I like to think I am.

94) I've found some great music on Pandora

95) I went to Catholic school from grades 1 through college.

96) I'm glad we picked up Martin on the side of the street on our way to a bar 100 days before I graduated from college. I wouldn't be where I was today had we not made that stop!

97) I'm easily distracted

98) I'm usually happy

99) I'm always grateful

100) I'm doing the best I can

Thursday, November 25, 2010

Happy Thanksgiving!

I'm thankful for these 3 turkeys.






Tuesday, November 23, 2010

More Antibiotics

We're back on antibiotics again. You're probably thinking "I didn't even realize you were off the last batch!" and you're right, they are kind of back to back. We had an appointment today and Drew sounds all kinds of junky again. There is a new theory that because of his small and floppy airways it may take more than just 2 weeks on antibiotics for everything to get cleared up and hacked out. So we're going to try 4 weeks on this antibiotic to see how that works out for us.

The Vest has been going okay. I will admit that hes a little on the small side for it. Not width wise, length wise. It bunches up around his neck which vibrates his head pretty good and doesn't allow him to control his neck well, so hes not a huge fan. If we try to pull it down while its running things go better, but its hard to hold onto because it shakes so much. Heres the link to a video I found on YouTube of a kid doing a Vest treatment. This kid looks like hes about two, but Drew's vest looks the same (except his is blue) and the treatment is done exactly the same way. I'll take a picture of him in it one of these days and post it. We just need a little more time to get the hang of it.



Saturday, November 20, 2010

We got the Vest!


The Vest came in the mail today! Hooray! No more CPT for us. The best part about the Vest is that we can do his breathing treatments while we do his airway clearance rather than before. This is going to cut this process in half! If you want to know what the Vest is or how it works, click on this link to read all about it.

A respiratory therapist came this morning to show us how it works. He puts on this tiny little blue vest (it looks like a life jacket but not inflated at all), hooks up to this really long tubes that are attached to a machine, set the compression, frequency and time, and then hit start. The Vest fills with air and the poor little man shakes like a mofo (that's right, I said mofo). His chubby little cheeks just vibrate like crazy. They told us that the compression feels like standing in 3ft. of water, so its not to tight, but holy cow does it shake. He didn't seem to mind it. He looked mildly confused the first time we gave it a shot, but we were all in the room (including the RT) and he just looked around and shook wildly. I wasn't here this evening when Martin did it again, but he said that Drew screamed and cried the whole time. I have to imagine that it will take a little getting use to, but I think/hope that he will get use to it and can just relax for the 24 minutes it takes to run.

I wasn't here while Martin did the treatment tonight because I went to the mall to have the twins stocking embroidered with their names. Crazy as it sounds, when I got our stockings from Pottery Barn post Christmas 2008 on super sale clearance, I bought two extra. I got mine, Martin's and Ella's embroidered with our names on it, but the stockings were such a great deal that I got two more with nothing on them. Worked out perfectly! The guy at the mall told me it would only take 20 minutes so we decided to just walk around for a bit. I don't know if its the full moon or what but Ella is in rare form. She hasn't stopped talking for 2 seconds ALL DAY LONG and is just bursting with energy. In the car she sings and sings and sings. I turned down the radio so I could hear her at one point and she singing "The farmer in the dell, the farmer in the dell, hi ho the dairy-o the farmer in the dell. The mommy takes a wife, the mommy takes a wife, hi ho the dairy-o the mommy takes a wife. The mommy takes a goat, the mommy takes a goat, hi ho the dairy-o the mommy takes a goat. And the goat takes a bigger goat, the goat takes a bigger goat..." I dunno.

Anyway, we're walking through the mall and all of a sudden, through the crowd, we see Santa. I'm not really sure she knows who Santa is or really gets the whole idea of Christmas and presents and whatnot. She was only one and a half last year. But as we approach she lets go of my hand, walks in the exit and right up to Santa and says "Who are you?". He says "Well I'm Santa! Do you want to sit on my lap" and she says "No". And she asks "What are you doing" to which he says "Do you want some stickers?". The photographer was like do you want a picture? I said no. I'll go later when I have all 3 kids. Meanwhile, Ella is looking this guy up and down, takes her stickers, and bolts. It went better than last year. (I'm not sure who looks more scared!)
We continue our trek through the mall in an effort to waste 20 minutes. On our second lap, we again came upon Santa. Ella looks at me, shouts "I want more stickers" and goes running back at Santa. I caught her before she got in the gate, and told her she couldn't have more stickers but she could sit on Santa's lap and tell him what she wants for Christmas. Not a moments hesitation, she was up on his lap, staring curiously. He said, "What would you like for Christmas?" She goes, "Little puzzles". He said, "Is that it? Anything else". She goes "Ummm, some big puzzles too." He asks,"Have you been a good girl this year?" She takes one good, long, hard look at him, jumps down off his lap and bolts.

We got the stockings and headed back to the car. I needed to make a quick stop at Bed, Bath and Beyond. I found an associate to ask him where I could find what I was looking for. He came back with it two minutes later. I let go of Ella's hand so that I could take it from him, I turn around, and Ella is gone. Literally, no more than 3 seconds, and shes completely missing. I am panicked. I start calling her name. The associate and and another employee both start combing the aisles that we were in/around. About 10 seconds later we found her, hiding behind a shelf. She thought it was hysterical. I was almost in tears. She was only missing for maybe 15 seconds. It was no time at all but it felt like an eternity. I said to her very sternly, "Ella, you cannot run away from mommy like that! You scared me! It made me so sad when you were missing". She responds with "Don't be sad mommy. Be happy you found me".

Thursday, November 18, 2010

I feel accomplished.

I finally got some motivation to do something around here. The past few weeks have just been so blah. Amidst my greatest attempts at organization and a clean house have been 3 kids who have been somewhat less than agreeable. Drew finished antibiotics yesterday, though he sounds more or less the same way he did when he started them leading us to believe, again, that this is just a lingering cold coupled with the malacia. Ella and Lily have had runny noses and coughs for about 2 weeks now. I finally took Lily to the doctor yesterday. They think shes probably got a mild sinus infection so they put her on antibiotics. I swear, if its not 1 kid its another. Hopefully this will clear up whatever she has going on, or at least make her more pleasant to be around.

My house feels like a bar where you throw the peanut shells on the ground while you snack, waiting for your beer or wings. Only the wings and beer i'm waiting on aren't coming, and the peanut shells are actually cheerios. I seriously need to vacuum. The cleaning ladies took a week off so its been a month since this place has been really cleaned. I'm on a new mission to free up my evenings, which includes exactly no downtime during the day. If it means that I get to plop down on the recliner at 10 after 8 every night and do nothing online for a couple of hours then I'll take it.

Ella is getting more responsibility for picking her stuff up around here. I give her options these days. For example, she can either pick up her toys when I ask her to, or she can ask me to pick up her toys for her. I tell her that I'm happy to pick them up for her, but she will have to go to timeout while I do it. She usually helps. The other trick I use now is telling her that if I pick them up, then I get keep them until the next day. We did that once and she learned her lesson.

I'm really trying hard to tidy as I go; picking up one thing before going onto the next, or taking 2 minutes to load the lunch dishes into the dishwasher before we have post-lunch pre-nap playtime. I can handle small messes, but the second I leave 1 small mess I automatically find myself in another small mess and before I know it I have a huge whole-house mess and then I'm overwhelmed and have to ask my mom to come visit and organize my tupperware cabinet.

I had to grocery shop at 10pm last night because I realized we were out of everything. Yup, thats right, out of everything. This morning I made a ton of baby food and my house smells amazing. I baked it all this time simple for the smells. I made apples, pears, peaches, squash, sweet potatoes and bananas. I had some yogurt in the fridge so I added it to the bananas and the twins had a delightful lunch. I also made a pecan pie (Grandma Lenda's - not mine, Martins). Seriously, the house smells so good right now.

I'm starting to think about Christmas. My goal is to not have to leave the house to shop. I get a dozen catalogs in the mail everyday and have found some cool things. I need to set a budget before I start because things can get out of hand, and quickly.

Thats my random ramblings for this morning. All 3 kids are asleep which hasn't happened in, oh, about 3 weeks and I feel accomplished.

Tuesday, November 16, 2010

Celebrity Waiters part deux

Today was the Celebrity Waiters event benefiting the Cystic Fibrosis Foundation. Its basically a bunch of local "celebrities" rubbing elbows with some of the more wealthy folk in town and hopefully dropping a buck for the cause. Oscar Robertson (or Robinson?) was there, Icky Woods, Bootsy Collins, a couple of other former football or basketball starts from local schools. We were the honorary chairs of the event.

We got to the VIP reception shortly after 11 when the event started. I'm pretty sure that if you were attending the event you got into the VIP reception. We didn't know many people there. We were definitely out of place among some of Cincinnati's wealthiest. We shook hands with a few people and sipped our water before being escorted downstairs for lunch and the main event. The event was all about schmoozing. Our perception was that these folks all kind of run in the same social circle and were just getting together for a nice lunch in honor of Cystic Fibrosis.

There were a few other CF families there that we got to chat with, and a handful of people from the clinic. We gave a brief speech about how CF has affected our lives, but frankly I didn't feel like anyone there really cared. I suppose it doesn't really matter whether or not they care, or really understood why they were there. They were throwing around big bucks for a good cause, but for me it was just a little disheartening. I could only help but think to my self if they really knew, if they really understood the purpose for this event it would have a much more profound impact. But I guess the reality is, like with a lot of things in life, unless it directly affects you in some way, you really aren't invested. And thats fine, its just not what I expected. I don't really know what I expected.

Here's what we said:

Good Afternoon-

My name is Erin Moore and this is my husband Martin. We have 3 children – Ella (2), and 8mo. Old twins Lily & Drew. Drew has Cystic Fibrosis.

Drew & Lily were born on March 14th of this year. The first day of their life was perfect. At about 36 hours old, a distended belly & an x-ray showed that Drew had a blockage in his bowel which we would later learn was something called Meconium Illeus, a red flag for diagnosing Cystic Fibrosis. It is terrifying and heartbreaking to have your 2 day old baby taken away from you, not understanding what is going on or why this is happening to you. When Drew was 4 days old he had his first surgery. At 7 days, he had his second. He was 3 months old when he had his 3rd surgery and his most recent surgery took place on September 7th when he was just shy of 6mo. All of these surgeries have been related to him having Cystic Fibrosis.

I remember when the doctor, he was a fellow, came into our room in the NICU at Childrens shortly after Drew's second surgery. We were almost certain of the news he was bringing us, but to actually hear the words “Drew has Cystic Fibrosis”, nothing can prepare you for that. We held it together while we talked with him. He stayed for almost 2 hours, answering our questions and talking to us about the disease. He told us there was no cure. When he left we both fell apart. The flood gates opened and a million emotions came pouring out. It wasn't fair. We wished more than anything that we could make him better, that we could take this away from him. And the hardest part was “there is no cure”.

Over the next several weeks and months we got an education on Cystic Fibrosis like nothing we had ever gotten before. There were doctors and nurses and social workers and dieticians and respiratory therapists and chaplains and so many other people who helped us learn about this disease, and to those people we will forever be grateful. I think that the most important thing that we learned during that time is that there is hope.

Everyday Drew spends about an hour and a half inhaling a series of different medicines. He does airway clearance exercises for an additional hour and a half every day. He takes special vitamins that his body is insufficient in producing. He takes enzymes every time he eats to allow his body to break down and absorb appropriate amounts of fat. Nearly every time Drew has gotten a cold he has ended up on either IV or oral antibiotics because his body begins to culture bacteria in his lungs that he cannot get rid of on his own. But he looks like a normal kid. He acts just like his sisters, and we treat him that way too. All of the advances in medicine over the past many years have given him this opportunity. But we still need new medications and better treatments. The CF Foundation has been a driving force behind nearly all of the major advances in care. CF research does not receive federal funding; the foundation relies on the support of people like you.

Back in the 1950s, few children with cystic fibrosis lived to attend elementary school. Today, advances in research and medical treatments have further enhanced and extended life for children and adults with CF. Many people with the disease can now expect to live into their 30s, 40s and beyond. The life expectancy for someone born with Cystic Fibrosis in 2010 is still only 37. Its amazing that 50 years ago Cystic Fibrosis was a childhood illness, and today many people are living well into adulthood, but its not good enough. Its hard to think that I may outlive my son. Its not supposed to be that way.

Tuesday, November 9, 2010

The Vest

I've got a lot of random things to talk about tonight. I wish I could sit in front of a computer all day everyday and write down my thoughts when they come to me because by the time the madness of the day is over and I get the chance to sit down for a few moments of relaxation a lot of those thoughts have gone as quickly as they came to me.

We were back at the doctor again today. Drew has been on antibiotics for a week now and still doesn't sound any better. He's not sick, at least I don't think so. He just sounds like he is. He was put on antibiotics about a week ago for a cold that had been lingering for about 2 weeks, so we're on the 3rd week of a "cold" with no changes and they decided they wanted to listen to him. It was me and the 3 headed downtown because the appointment was made at 10am for 1pm. They were happy with the way he sounded, in as much as he was moving air, not retracting and his lungs sounded clear. But this noisy, rattled breathing is just confusing and concerning. They think that what we're hearing is mostly from the malacia, but there is extra mucus down there getting hung up on his floppy trachea and making him rattle. They decided to start hypertonic saline. Some of you may be familiar with the term "hypertonic saline" if you've been voting for the Pepsi Refresh Project grant. Its a concentrated saline solution that can be inhaled and is currently being tested in infants to see if the replacement of salt in the body can help to keep the mucus secretions thin and moving appropriately. It has been tested and proved effective in adults but hasn't been studied in infants (which is why you should vote daily for the Pepsi Refresh Project!). ANYWAY, since there is some data to support the use of hypertonic saline, the doctors decided to give it a try with Drew. We will start it tomorrow morning. Hopefully it will help to thin out some of the mucus which will help him to clear it more effectively and start sounding better. They did a deep throat culture too, just to make sure there's not something growing down in his lungs that isn't being addressed with the current antibiotic.

So there's that. I always hate the waiting that comes along with a culture. It takes a couple of days for the results to come back and I'm just always worried that its not going to be good news. Antibiotics are useful...on most things. But if something were to show up, like B.Cepacia, Pseudomonas, or MRSA it would just suck. I hope that in Drew's lifetime a cure can aleviate this constant worry and fear.

I also talked to the Respiratory Therapist about changing our technique of airway clearance from CPT (Chest Physiotherapy) to the Vest. Every morning, every afternoon and every evening we sit with Drew for 30-45 minutes of nebulizer breathing treatments of various medications followed by 30 minutes of beating on Drew's chest, sides and back with a cupped hand (or similar little device designed specifically for this task.) to loosen up the mucus in his chest. The whole process takes anywhere from and hour to an hour and a half or up to 2 hours depending on the number of nebulized med's we're giving him. The Vest is basically, well, a vest that you wear that hooks up to a machine and compresses and vibrates. It is proven just as effective as CPT and it takes just as long to do, but we can do the breathing treatments during the vest treatment, whereas with CPT we had to do breathing treatments first followed by the CPT because both required our hands to do. With the vest, we put it on him, set the machine to run, pour a nice glass of wine, do his breathing treatments and all is over around the same time, in just about 30 minutes. Thats an hour and change saved every day. I'll take it.

Here's the thing about the vest. You have to be at least 18in around your chest to get a vest. Our portly little fellow met that criteria about a year before they really expected him to. CF kids (hasty generalization) tend to be on the thin side because most, like Drew, have pancreatic insufficiency meaning their pancreas doesn't secret the enzymes that break down fat and therefore they need to take medication to help with that. With this insufficiency, a high fat diet is encouraged to replace the fat often lost because of the body's inability to break it down. So much research has come such a long way in such a short time that our dietician and I'm sure many dieticians with many other CF centers work so closely to manage fat intake and enzyme supplementation to ensure proper weight gain and growth. Its a lot of work, but we've been successful at fattening up our little man. So CF kids typically don't get a vest until they are a year or two old, so we've been told. But there's really no reason that he can't get one. Their only criteria is that he can sit on his own and he can certainly do that. So hopefully sometime in the near future (read: sometime before our insurance changes on Jan.1) we will be able to make that switch.

Finally, little man got a tooth. Not Lily, whose been screaming her head off for the past 3 weeks, drooling like a fool and chewing on anything that comes within reach. It came quickly and quietly, kind of how Ella got her teeth. There was no extra drool. There was no lack of sleep. A bite on the chin is how I knew it was in there. Hopefully the rest come in just as smoothly!

Monday, November 8, 2010

Ruling Overturned

I'm pleased to announce that after many hours on the phone with the insurance company, nurses and doctors, insurance has overturned their decision and they have now approved the Synagis shot for Drew. I'm so glad that he will be able to get this and so are his doctors. Hopefully we can get it scheduled soon to avoid any risks.

Daylight saving was not good to our family. On Sunday the kids were up really early, and then opted out of naps for the entire day. To be fair, I don't think it was just the time change - they both have teeth coming in too.

Later this week we are getting together with another family that has a son with CF (he's 28) to prepare our speech for the Celebrity Waiters event. I have no idea what to expect but I'm looking forward to it. The event isn't until the 16th and I'll definitely post an update once its over.

Drew is on antibiotics again. Hes had a lingering junkie sound for a couple weeks now. Rather than have us in for a culture, they decided to treat him and save us the trip. I have to admit its not making much of a difference. Its been about a week and he still sounds pretty much the same. I think its just that he got a cold and the little extra mucus is getting hung up on his floppy trachea (malacia) and making it sound like he still has a cold when really its nothing more than a sound. That said, I'm happy we're on the antibiotics because we all know that extra CF mucus hanging out in the lungs almost certainly breeds bacteria, and we don't want any bacteria. To reiterate what I've said many times, the antibiotics won't cure the cold, its viral, but it will kill any bacteria that decides to move in.

It gets dark to early these days. We hardly got out of the house when the weather was nice for the past 8 months, so I'm totally dreading the next say 5. There are weeks when I'm sure we won't go anywhere, and those are the weeks when I'll want to pull my hair out. But there will also be days like today where we don't go anywhere but have a great time hanging out together and make all of the crappy times worthwhile.

Wednesday, November 3, 2010

Wednesday

I couldn't think of a title for this post so I went with today. I've been on a blogging break lately. Not because I don't have anything to write about. Its because I don't have any free time. I almost listed my 2yr old on craigslist yesterday under the "Free" section. She knows what buttons to push and she pushes them all. I feel bad for her, I do. She just wants some undivided attention, which is hard with 2 babies in the house. I try to give that to her when the twins are napping but she spends 2/3 of her day in time out anyway. Shes only 2, she doesn't always understand why we want her to do what we want her to do, but she needs to learn right from wrong. She might send me to an early grave. Martin thinks its payback for me being a royal pain as a child, but that didn't happen until I was older (mom & dad need not comment). I'm hoping to find a nice adoptive family for her by then.

Lily is another story. Shes either growing teeth or horns. She'll smile at you with her twinkling
eyes, and the second you turn away there's smoke flaring out of her nostrils. I don't know what to do to help her. She sleeps all night but during the day she can't catch a wink of sleep for fear that the world might stop spinning if shes not screaming at the top of her lungs. Ella teething was a walk in the park. I didn't know she had a tooth until she bit me, so this is a whole new thing for me.

Its easy to forget that Drew is here because he just sits and smiles and sleeps and smiles some more. I haven't had to do to much dealing with doctors and pharmacies and insurance companies lately because hes been relatively healthy. Hes had a cold for about 2 weeks now and sounds kind of junkie but he can clear it when he coughs, although it comes right back 2 minutes later.
I got a call from the hospital letting us know that they were cancelling their scheduled "home care" visit to give him the Synagis shot since insurance wasn't going to cover it. I told them that our doctors were working on an appeal. They told me that a lot of times insurance automatically rejects the request because not many people go to the trouble of appealing (they must not know me!). So I asked the woman what the process would be for getting the shot without insurance approval, as in paying for it ourselves [and living in a cardboard box out back until we can afford to pay for power again] and she said something to this affect "Oh, you wouldn't want to do that, its really expensive." I was like yeah, I know, like $1000 a shot and he needs six of them, we know. We, with our doctors, just really feel like its important for him to have this to eliminate any risk of RSV. She asks how much he weighs. I said about 18lbs. She said its more like $4700 a shot. HOLY WHAT?! Hopefully the appeal process works. And quickly.

Oh yeah, and I'm 30 now. It happened quietly and quickly. Someone let word out on Facebook on Monday and I got a handful of well wishes, but otherwise I was able to keep it low key. I had a great surprise on Saturday night when Martin invited some of our good friends over and got take-out from one of my favorite Thai restaurants. I drank [way to much] wine as we sat out back around the fire pit and ate smores like they were going out of style. I had a good weekend and a good birthday and hopefully 30 is as good a year as any.

Monday, November 1, 2010

Trick or Treat




Friday, October 29, 2010

F'ing Insurance

Our pediatrician and CF doctors recommended that Drew get a special vaccine called Synagis which protects against RSV. RSV is respiratory syncytial virus and its a particularly nasty virus in kids with chronic lung problems. Older, healthy kids who might catch this bug would probably just end up with an ugly cold, but in high risk kids, particularly babies, in can have serious and even deadly effects. Its apparently very hard to get this vaccine unless you have a qualifying condition. Here are some of the American Association of Pediatrics recommendations for who should get this vaccine:

1) Infants and children under age 2 years who have required treatment for chronic lung disease, such as oxygen, bronchodilators, diuretics, or steroids, within 6 months of the start of RSV season.

Our doctors sent in all of the paperwork to our insurance company so that he could get this shot once a month from November - April (the "season" for RSV) and I just got a call that he was declined. DECLINED!! The woman from Anthem that called said that the doctor had reviewed the case and Cystic Fibrosis is not a qualifying illness and it is not necessary for him to receive this vaccine. Seriously? A real life doctor, someone with an actual medical degree declined this? If they won't consider Drew high-risk, who will they? I know why they declined him. Its $1000 a shot and he needs 6 shots. We pay a damn fortune toward insurance every month toward our premium and even more toward hospital bills and prescriptions, and they won't pay for him to get this critical vaccine because he doesn't qualify?! BS. I'm appealing it. I asked her how the process work. I've made the phone calls. All in the past 20 minutes since they called me to say they were declining us. And at the end of the call she asked if I had any other questions. I said no. She said well I hope you have a nice Halloween! Fuck you.

Thursday, October 28, 2010

Bacon & Eggs

We just got back (okay, 2 days ago) from a fabulous trip back to Pennsylvania. The drive could not have gone better. It took us about 10 hours each way, and on both ends we only had to stop twice! There was very little crying & complaining, and lots of sleeping! The visit, on the other hand... The kids were just a little out of their element. Nap times were a little off and there was usually someone awake in the middle of the night for one reason or another, but otherwise we really did have a great trip.

A lot of my family got to meet the twins for the first time. Its always interesting to see people who haven't seen/met Drew yet have to say about him. There are always a lot of questions about him and his care and we are more than happy to answer them. From the start, we felt that knowledge was power and thats why this blog was created in the first place. No one can ever believe how big he is. I guess they expect this frail little boy, but he's far from that! We heard "If I didn't know his story, I would have no clue anything was even wrong with him!" more than once. Thats the blessing and the curse I guess. I love that he looks so great, just like the other kids. Chubby little boy, full of smiles and laughter. Everyone will treat him just like the other kids. On the flip side, I don't know that anyone will ever really understand what we go through every day to keep him looking that way.

Hes doing great right now. He sounds a little junky again but I guess thats just the deal when he gets a cold, at least until he outgrows the malacia. He's pretty much done with the vomiting. It still happens from time to time, and it seems to have something to do with him being really full. The GI doc wants us to continue using the Elecare formula for a couple more weeks and if he still seems to have slow gastric emptying they will put him on some medicine to help with that until his stomach heals completely from whatever he had (they said it can take up to 8 weeks!). We're hoping to get him fitted for a vest next time we're at the doctor. This is another airway clearance device that would take the place of our chest percussion. It still happens 2-3 times a day but it would make our lives a little easier (at least I think!). I'll write more about that when the time comes.

We have Ella's Harvest Festival at school on Friday. She's going to be Tinkerbell and the twins are going to be bacon & eggs. Hopefully we will have a relaxing weekend. I'm so tired from this past couple of weeks that I could use a weekend full of nothingness.

Thursday, October 21, 2010

Philly or Bust

We made it! I consider 10 hours in the car and only 2 stops a huge success. There was very little crying and whining either! We made the trip yesterday from Cincinnati to Philadelphia for my cousin's wedding this weekend. The packing was actually more stressful than the trip. When we got here at 10:30pm though no one wanted to go back to sleep. Finally by about 1:30am the house was quiet...until about just before 6am when Ella needed to find Squirt (the cat). The twins are on a bit of a crazy schedule today but everyone is in bed now (8:15pm) and hopefully tomorrow will be back into the swing.

Sorry my posts have been kind of lame lately. I'll get back into it. I'm just enjoying crazy life with everyone at home, and now this next 6 days our first real trip with the twins. Hopefully the rest of our visit goes as smoothly as the past two days, and I'll be sure to post some more when we get back!

Saturday, October 16, 2010

Thanks for understanding

Things on the homefront have settled down some. We came home from the hospital on Tuesday evening, concluding our 1 week stay in A6N. I'm glad we were able to come home. I'm glad the puking stopped. I kind of had hoped for a better answer as to why it was happening lest it happen again, but I'm relieved that they couldn't find anything serious. We're finally back to full feeds, thats 8oz of 20cal formula about 4 times a day. There hasn't been any projectile vomiting yet. We have some appointments next week with the CF Clinic and the GI Specialist who we saw in the hospital. Hopefully we get the all clear and can start feeding Drew fruits and veggies again. The poor kid lunged mouth open at my granola bar yesterday - he's hungry. Whatever the problem was, it seems to be over, but we don't want to rush back into anything, taking our return to normalcy one step at a time.

My cousin is getting married next weekend and we're hoping to make it back to PA for that. Prior to the whole vomiting extravaganza, I had some anxiety about the actual trip - are we going to all survive 10 hours in the car?? Now, I'm more anxious about the logistics of keeping Drew healthy for the 5-7 days that we will be 500+ miles away from his doctors. The list of meds and equipment I have to bring is ever growing.

The last time we were in PA was Thanksgiving of '09, so almost a whole year. There are a ton of friends that we want to see and a lot of other people who are anxious to meet the twins. I'm so nervous about this. Our friends here have gotten use to the drill - wash/sanitize your hands upon entering our house, and kindly don't touch the babies. Its hard. I'm guilty of doing it to others! When you see a baby, its hard not to reach out and touch it, whether you know the kid or not. With Ella, I didn't really mind it to much when people would reach out to grab her hand or touch her cheek, but things are different now. The more people handling the babies, the greater the chances are that they will pick up a cold or something and then our lives are turned upside down with endless trips to the doctors and the fear of a hospital stay. I really do try to keep things as normal as possible. I don't want people to be afraid of us, I just want people to be respectful of us and our concerns. We want the twins to meet you as much as you want to meet them, but please understand if we ask you not to touch them. Again, think what you want of me, but its my life and I need to do what I think is best.

Hopefully we get the all clear on Tuesday and can make some plans to see some of our friends who we haven't seen in ages. We haven't even told many people we're planning to come back east because we don't have anything set in stone, but once we get the all clear we'll definitely try to find some time to see all of our friends and family who we haven't seen in what seems like forever. And if we can't make it this time, we will definitely plan another trip soon!

Tuesday, October 12, 2010

Bustin' Out

I think we're heading home! Drew had a motility study done yesterday where they measure the speed at which formula leaves his stomach. It was perfectly normal, just as was every other single test they've done for him over the past week that we've been in here. Yesterday he started to tolerate his feeds a little better. He was able to keep down 2oz of his special Elecare formula along with 6 oz of Pedialyte for 5 or 6 feeds without any vomiting. We went up to 3oz of Elecare this morning and nothing came shooting back out at us. At about noon he had 4 oz of Elecare. No puke. So I spoke with the GI doc at just about 1:00 and he said that whatever he had seems to have gone away and that we should stick with the Elecare for two weeks and then see him again to discuss the transition back to his regular diet. And with that, we're outta here. No real answer.

Post Infectious Gastroenteropathy was our "diagnosis". That means "disease of the stomach & intestines". Caused by what you might ask? Great question. Who knows. The GI doc said that he assumes it was Gastroparesis, a condition that affects the ability of the stomach to empty its contents, but there is no blockage (obstruction). It may have just been a bug like you or I get that for whatever reason he had a harder time tolerating and caused some inflammation in his stomach which caused the gastroparesis. Who knows. The doc described it like a bruise. You get punched in the arm. The incident is over, but the soreness and evidence of the punch is still there. The bug may be gone, but the soreness of the stomach and vomiting may still exist for a little while. All we know for sure is that the 10 days of vomit seem to have come to an end and with any luck won't be returning.

Thanks again for all your thoughts, prayers and suggestions on what could be going on. Hopefully we don't have to play that game to much in the future :)

Sunday, October 10, 2010

Open To Suggestions

So the switch in formula seems to have made no change. He seems to be able to tolerate 2 oz of the new formula, but anything more than that, in formula form, comes shooting right back out at us. However, we can give him 2 oz of formula followed immediately by 5 ounces of pedialyte and it all stays down. Hmmm. I thought that maybe we just needed to build up to tolerating the new formula. After all, the GI doctor said that it could take a few days before its tolerated and then a few weeks on the stuff before the belly is healed. Its just hard when everything that goes in comes back out. It would seem that maybe the rare "inflammation of the belly" bug isn't the culprit here.

I'm going to lay the whole situation out once again, from day 1 when this started happening. If anyone has any thoughts, regardless of whether or not your a doctor, please let us know. We're willing to consider anything.

On Friday October 1, Drew started throwing up his bottles of formula. I think there were two instances on Friday. Things continues on Saturday and on Sunday. It wasn't specific to right after he ate. He could eat and 3 hours later throw it all up (and I seriously mean all. like heaving, shooting puke, flying across the floor) or it could happen nearly immediately. Wet and dirty diapers remained normal. By Sunday, and having kept just about nothing in, we were able to pinpoint the puking to a sitting position. He could jump up and down in a jumparoo and not get sick, but as soon as you bent him into the sitting position - carseat, high chair, just sitting on the floor - projective vomit.

We saw the pediatrician on Monday who ordered an Upper GI study where they give him something to eat that shows up on an xray. This showed a perfectly normal esophagus, stomach and start of the small intestine. His bowel was slightly distended but not concerning to the tech. Tuesday we were in here for an unrelated bronchoscopy (which came back clear!) and then on Wednesday with him still puking they decided he needed to be admitted for observation so that he didn't get dehydrated. He hadn't kept anything down since Friday.

Outside of the puking, he looks and is acting perfectly normal. Playing, smiling, wet & dirty diapers are normal, no fever, absolutely no other symptoms. If you bent him, he puked. On Thursday morning, the doctors looked at some xrays they took on Wednesday night and thought that he might have DIOS which is a partially obstructed bowel, common in CF. All the tests they did came back negative. They tested him for Rotovirus, CDIFF allergens in his blood, and a dozen other things, all negative. Well, CDIFF was tested 3 times and 2 came back positive, but since he is completely symptom-less (its a colon problem with terrible diarrhea) they think that hes either 1)just a carrier or 2)they got false positives with is apparently reasonably common in children until 1yr).

By Friday, the puking was no longer specific to position, meaning he would puke even if you didn't bend him. It was also almost immediately after he ate. There was no more eating and playing for 2 hours before puking, it was right away. We took him off the formula (yes, we tried switching from our normal Good Start to Similac Soy, no change) and gave him just pedialyte, which he is able to keep down in small quantities. We met with a GI doc on Friday afternoon and hes the one who suggested that it might be this weird inflammation of the stomach thing that could cause a temporary intolerance of the formula, so they switched him to Elecare, a predigested formula that should be easier on his system. He said that it could take a day or two for him to tolerate that so on Monday we could see where we're at and take it from there.

On Saturday, we tried a 4oz bottle of the Elecare which was promptly returned all over us and the floor. After that, there were two feedings of pedialyte which he kept down. Later in the afternoon, I gave him 2 oz of Elecare followed by 5oz of Pedialyte and he didn't barf! Before bed, another 2 oz of Elecare followed by 5oz of Pedialyte, still no vomit. This morning, Sunday, we tried 4oz of Elecare again and it all came back up. Three hours later, we went back to 2 oz of Elecare and that too wasn't tolerated. The only thing that goes down and stays down is Pedialyte, except for the small doses of Elecare yesterday.

The only other things going in at this point are his enzymes on about half a teaspoon of applesauce. We even tried giving him the enzymes (Creon) without the applesauce which yesterday he was able to tolerate those two feeds, but this morning was not. Everyone doubts that a half a teaspoon of applesauce would cause this big of a problem, and this morning without applesauce he still threw up - myth, busted.

He was on antibiotics for 1 month prior to this vomiting for staph that they found during a post surgery (aorta pexi) bronchoscopy. No one seems to think that would have anything to do with the vomiting, but I'm just putting it out there. It was Keflex, and he stopped it the morning before the puking started. The CDIFF thing popped into our heads because it was post an antibiotic treatment, but there has been absolutely no diarrhea.

I don't know who all reads this but if anyone has any thoughts or suggestions we are open to hearing them. Tomorrow they will do a motility study to see how quickly his stomach empties and then will start thinking about other tests that can help us figure this out. In the meantime, thanks for your continued thoughts and prayers. We'll keep you posted!