Wednesday, March 28, 2012

Anniversary Visit #2

Today we had Drew's 2yr anniversary visit at the CF Clinic. He had all of his labs drawn back in Feb when he had his surgery, so this appointment was more of a checkup since we'd had all of those results. Everything looks good! He's still in the 85th percentile for weight. The sinus surgery seems to have cleared him up nicely and everything looks open and clear. He's compliant with his breathing treatments and airway clearance so there wasn't much to discuss there. Overall they are very pleased with him and we hope to continue down that path.

Things around here are settling down a bit. New baby Jake is almost a 5 days old now and the other kids are warming up to him. We're surprisingly not really to tired. I think we are recalling the first days of the twins and how miserably tired we all were, so this is truly like a walk in the park. He's already sleeping for 4 hour stretches at night. I was blessed with excellent sleepers, all of the other sleeping through the night between 8-12 weeks (and by "through the night" I mean 10-12 hours) and I'm seriously hoping Jake follows suit. They have their fair share of other flaws but the sleep thing is a big score in my book.

We actually got out of the house today for a while. I dropped my parents and the girls off at storytime and Jake and I ran to Carters and made a quick stop at Starbucks (Martin had Drew at the doc). Later in the day, Ella and my mom and I went to Orange Leaf for a little girls afternoon treat. Tomorrow my parents are heading home and Martin's mom is coming for a few days. Its definitely nice to have the extra hands around to keep everyone entertained and happy. While it will be a transition once I'm on my own again after Easter, I'm hoping its a pretty easy one, with Jake just sliding into the mix.

I found a great post on another blog that I read that I thought I'd share. This guy is the one who spoke at our CF Education Day. He's usually got something good to say about the CF world and is a great blog to follow. Here's the post I liked - Major Needs in the CF Community. I agree most with the need for exposure to good stories, and I very much try to post the link to positive news about CF on my Doin' It For Drew Facebook Page.

Sunday, March 25, 2012

HE's here!

Jacob Russell Moore was born just shy of 1 week late, at 2:58am on Saturday, March 24. He weighs 7lbs 11oz and is doing great. We are hoping to bring him home to meet the rest of the crew later today.
We will have the Genzyme tests done to find out if he has CF or is a CF carrier, but it will be several weeks before we get the results. There don't seem to be any early complications like we had with Drew so we are thankful for that and will let everyone know when the tests come back.
Thanks for all the thoughts and prayers!

- Posted using BlogPress from my iPhone

Wednesday, March 21, 2012

Still no baby

We are 40 weeks and 3 days today and there is still no baby. My doctor will induce me at 41 weeks so the end is in sight. I think this kid hears the chaos of the outside world and has no desire to join us. Its just a theory.

While I wait, I'm working on rallying some support for our Great Strides Teams. This year we are walking in the following cities, and you can click on any of these sites to join Team Doin' It For Drew or to make a donation. The sooner you can register the better, as I'm working on ordering new t-shirts for our team this year. We are asking for a $5 donation for t-shirts this year in an effort to raise as much as possible for our team.

Last year we had a pretty good turnout at our Cincinnati walk, an awesome turnout at our Philly walk, and some good representation everywhere else. I'd love to make things bigger this year. I want to make Team Doin' It For Drew known and I need your support to do that. It was an awesome year for the CF community and I want to thank them for all that they've done and continue to do for kids like Drew by having an awesome fundraising year. Will you help?

Saturday, March 17, 2012

Be better than you were yesterday

Today was CF Education Day at Cincinnati Children's and I got to go!! I'm due tomorrow, but since I'd made it this far I was really hoping not to have the baby last night, and was absolutely delighted that I got to attend the seminar today. Because we have a totally awesome friend who is willing to watch our many small children, Martin was able to go too! They only have this event every two years, and the last time I went Drew was still in the NICU and I had no clue what CF really even was other than something that we were going to be dealing with for the rest of our lives.

The morning started off with a great presentation by the directors of the pediatric and adult CF care centers, talking about where our care centers stand compared to others nationally. We are one of the few centers that has both a pediatric and an adult care center, and are even luckier to have a few doctors that see patients in both, aiding in the transition from child to adult care. The the CF Foundation talked about some of the work that they do and events coming down the pike. After that, I had the chance to talk for a few minutes about advocacy. I could go on for hours, but I focused on the CF Foundations Policy Agenda and how we, as parents and patients, need to be involved to really make a difference.

The next speaker was the hit of the day, in my opinion. CF patient and blogger Ronnie Sharp from RunSickboyRun gave a great speech about his life with CF and the tricks that CF has played on him throughout his life. The main things that I took away from his story is that you control your own fate. Sure, we might have some bad cells that we're dealing with, but adhering to your treatments and seeing the doctors regular and taking control of your disease so that it doesn't take control of you are some of the things that are going to help you make it. A lot of people, self included, talk about how CF is a progressive disease. And he put some perspective around that, saying that life, in general, is a progressive disease. We are all going to get older. Our health, regardless of whether we have CF or not, is going to decline over time. When we put such a negative connotation around how someone with CF is just going to continue to decline in health, it makes it hard to focus on all of the positive and all of the opportunity that that person may have. Like if your health is going to go downhill anyway, why bother! I don't want Drew to have that attitude, ever. Or any of my kids! While I know that CF does get worse over time, often times out of our control and despite our best efforts, i'm going to focus on all that we can do to keep it going right. He suggested not comparing yourself to anyone but yourself and simply striving to be better than you were yesterday. It was a really really great presentation by Ronnie, and if you happen to want to watch it, you can click here and fast forward to about the 1:15 point in the presentation. Its about an hour long but its such a great speech!

The afternoon started with a couple of breakout sessions. Drew's doctor gave a presentation on the transitions of care from parent to patient. It wasn't super relevant as we have some time before Drew will be responsible for his own care, but interesting nonetheless. After that, we heard a dietitian talk about ways to ensure CF kids are getting all of the calories and fat they need. Right now, Drew needs around 2600 calories a day to stay healthy, and that's not always easy to get in! Her suggestions are any dieters nightmare - add butter, cream, dressing, syrup, basically any topping to any regular food to beef up the fat. For anyone who doesn't understand the need for CF kids to have a high fat diet, read this and it will make more sense.

After lunch, we heard from a doctor talking a lot about CF related diabetes. Unfortunately many people with CF develop diabetes and it just becomes something else to manage. She also touched on bone density problems in CF. I hadn't heard much about this before but it was interesting to hear about the red flags they look for and the testing that is in place to catch problems before they become problems.

Finally, we heard from Dr. Clancy on the Latest in CF Research. So much great stuff is and will continue to happen over the next several years. There is so much hope for a cure right now. Several presenters said that if there was ever a time to be born with CF, now is it.

Here are links to most of the presentations from the day, broken out into the morning and afternoon sessions. The morning session included the presentations How Are We Doing - Cincinnati Outcomes and Highlights from the National CF Conference, News From The CF Foundation, and Ronnie's CF Bag of Tricks. The afternoon session presentations were Endocrine Issues in CF and The Latest in CF Research. All of it was totally great, and I'm so happy that this baby I'm having held off long enough to allow me to go!

Tuesday, March 13, 2012

What a long, strange trip its been

Tomorrow my two will turn two! I cannot believe its been 2 years since we had them. At the time, and many times since, I didn't know that we'd make it to age two. Twins are a lot of work, but a lot of the time there is twice the reward. March 14th is a day that changed our lives...for the better. And who knows, maybe their newest sibling will also share their birthday with them!

This past year, Lily got even feistier than she was her first. She has prompted numerous calls to poison control, made just about everyone in the house (self included) cry at one point or another, always lets her opinion known, and makes us laugh on an hourly basis. She talks and talks and talks...and talks and talks and talks. But like her mama, when shes got something to say she doesn't hold back. I think we are going to be in for a treat with Lily turning 2. I'm sure many more stories will follow.

Drewboy had a seriously wonderful year himself. We spent far less time at the doctor this year, had only 1 bronchoscopy & 1 surgery, and didn't get sick all winter long until a short stint in February. He's got a serious love for dogs, cars, and many other things "boy". There was walking, talking, and a little bit more food exploration. He's still a mama's boy and I hope that never changes!

I hope the next year is as good as the last one was because we really had a wonderful year! Happy birthday babies! You're gonna make wonderful big siblings...any day now!
Lily Grace


And one of Ella, just because she's so cute

Saturday, March 10, 2012


Thursday, March 8, 2012

About Antibiotics

Update: I talked to the CF docs and they agree with me, that treating with antibiotics when hes not symptomatic and we haven't cultured anything is not necessary!

Drew had his sinus surgery follow up appointment yesterday. I personally think he looks and sounds great. Since its still cold season, a little runny nose here and there wasn't bothering me much or causing concern because hes so much better than he was before the surgery. The doctor didn't totally agree with me. He thought he sounded better and looked improved, but when he looked in his nose he still saw a fair bit of mucus. He used a suction to pull it out - definitely not Drew's favorite part of the trip. He said that based on what he saw, he wanted to put him on antibiotics. I had some hesitation with this, as the simple fact that he has CF would cause him to have some extra mucus/congestion, so jumping right to infection isn't my favorite thing to do. When he was completely clogged and had the surgery, that mucus didn't show any bacteria growing, so I didn't understand why some new, milder (in my opinion) congestion would merit antibiotics when we weren't even sending it to the lab to be tested. I do understand the doctors desire to get him as good as we can, but I think hes doing pretty good, all things considered.

Then the doctor told me he actually wanted to put him on a nasal drop antibiotic as well, something called Ciprodex. I believe its normally an ear drop, but he wanted me to put it in his nose instead. Keep in mind that this ENT doctor is one of the top ENT surgeons in the country, so I do trust his expertise. However, he's not a CF doc and I felt that he was somewhat overlooking the fact that Drew has CF. Cipro is an antibiotic often used to treat pseudomonas. Whenever we've had pseudomonas in the past, the CF doctors treat very aggressively with two antibiotics at the same time because pseudomonas is a very clever bacteria and easily morphs into different, antibiotic resistant forms. By hitting it with two antibiotics at once, it gives them a better shot of killing it because it can't hide and transform with two different things trying to kill it. The most important thing here is that Drew doesn't have pseudomonas right now, so treating it with an antibiotic, in my opinion, is ridiculous.

But here's the thing. If you or I were to go to the doctor for something like a sinus infection or an ear infection or something, the doctor takes a look at us a prescribes something that is commonly known to kill the bacteria that commonly causes the infection they are seeing. They don't take a mucus sample from you and send it off to a lab to see what drugs will work best for getting rid of it. With the CF clinic, its pretty much the way that they treat you. Because there are so many infections with CF that require antibiotics to kill bacteria and preserve lung health, if they just treated every infection with what they though would get rid of it, we'd be building up a ton of bacteria that's resistant to most antibiotics. The way they do things is smart. So when a doctor (any doctor) wants to treat Drew with antibiotics before testing to see if he's just got a virus or if hes actually got bacteria, and then what bacteria it is and what antibiotic will best get rid of it, I'm hesitant. I need antibiotics to work for this boy for as long as humanly possible. He needs them to, because once they stop working, bacteria starts wining and lung function starts declining and infections become more and more life threatening.

So I called Drew's CF doc to discuss what the ENT had prescribed. If she thinks that the oral antibiotic would be alright to give him to try to clear him up a little more then I'll be okay with that I guess. The nasal drop is the one that I'm not going to give him, unless they both test for pseudomonas and get a positive and add another antibiotic that is effective against pseudomonas so that we can double team whatever kind of pseudomonas infection may be causing his trouble. The tests done 4 weeks ago showed no pseudomonas, so unless he's gotten it since then, I think that treating with the Cipro is probably going to be throw out.

Its hard, I think, dealing with all of this crap. You really have to be on your toes and truly be an educated advocate for your kids health. If I didn't raise questions and concerns, or if I didn't know to raise questions and concerns, his health could and would suffer. I trust his CF doc more than anyone. And the other doctors that we have to see I also respect and trust, but I have to remember that I am more of a CF expert than they are and challenging them is only for our own good.

So for now I'm holding on the antibiotics because I don't totally believe that he needs them, and when I hear back from CF, we will make an informed decision. And then educate whoever will be taking care of these kids on how to give him whatever he needs if I ever have this baby.

Tuesday, March 6, 2012

Still waiting

Not a lot new these days. No baby yet, but the end is in sight. Fundraising for Great Strides is off to a good start, though I'm hoping to ramp things up somehow before all is said and done. Drew's health has been generally pretty good, and tomorrow we have our surgery follow up appointment. He's talking a lot more and I credit some of that to his sinuses finally being clear. I guess we'll see what the doctor says tomorrow. We are supposed to have our anniversary visit at the CF Clinic on Monday but I think I'm going end up changing it to later in March or early April. When we had the sinus surgery and bronchoscopy last month, they were able to draw the labs for his anniversary visit and everything came up roses. I talked to the doctor briefly about it all, since it was so good there wasn't much to discuss. And she's comfortable with not seeing him on Monday since he seems to be doing so well.

Doing well is such an awesome thing, but it doesn't shake the fear in the back of my head that the tables could turn with the snap of a finger. There are so many uncertainties with CF, where by one day you are perfectly healthy and the next you're running a fever and have a horrible lung infection. With us having this new baby right around the corner and leaving the kids for a night or two with other caregivers I'm especially worried about his health. Everyone who will be taking care of the kids in our absence is fully trained on his breathing treatments and airway clearance, but we still know him in a way no one else ever possibly could, and I know when a cough merits an extra treatment or a call to the doctor. Hopefully all will be fine, and we are just a phone call away if they need us.

I'm going to veg out on the couch now for a couple of hours before I go to bed. I'm totally exhausted and ready for this baby to get here, and hopefully, the next time I post on the blog it will be with the news of quatro's arrival!