Saturday, November 27, 2010


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 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


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