Anna Rose is Two!

971750_4822181721923_1907064907_n

June 16th was Anna’s 2nd birthday! It’s hard to believe that she has only been here for two years, I can’t even imagine a time without her in it! Over the past two years, she has filled our hearts with so much joy and brought so much laughter and love to our family. Anna has changed a lot of things for our family and I can honestly say she has changed us all deeply for the better. She is the most loving and the most strong-willed little girl. She is determined and hilarious. I’ve learned SO much from being her mom. I feel so lucky every single day that I wake up to my kids beautiful faces!

Somewhere in the past year CF transitioned into completely normal life for us. We’re still learning every day but once we felt like we had a deep understanding of what CF is and how to recognize problems quickly with Anna things started to feel better.  There are still scary moments when I feel surprised by the severity of her illness like the few times she was close to hospitalization this year, but the good thing is that those times have been few and far between. Her treatments and medicines have become routine and the sanitizing, cleaning, and just being germ-conscious has become second nature.

Anna seemed to enter the terrible two’s a little early so we’ve been dealing with some rebellion here and there. She went through a period of time when she tried not to take her enzymes, she would cry or run away. She also has her moments when she doesn’t want to do her vest and nebs. She’ll cry, kick, scream, etc. The way I’ve managed it is to stay firm, this isn’t an option for her and I want her to have that mentality in the future. It might sound harsh but for any other moms or dads struggling with the same issues I’ll let you know what works for us: tough love. I flat out tell her she can’t eat until she takes her medicine. Sometimes she’ll hold out for a little while but eventually she takes the meds and eats. During her vest if she’s causing major problems like pushing her nebs away then I tell her I have to hold her and I hold her and do them for her. She’s very independent so she’ll always eventually choose to do it by herself willingly rather than me hold her.  It might sound harsh but it works for us. While I’m hopeful for a cure, until we have the cure in our hands and Anna has it in her body, I envision her future with CF in it. I want her to be prepared for taking care of herself on her own one day, I picture her in college and considering skipping meds or treatments and I know I want her to think “no, that’s not an option for me” and keep herself healthy.

Another recent change is that she is now taking the enzymes ZenPep 10,000 unit capsules so they are larger but she only takes 3 with every meal instead of 6. It’s a little more helpful and will be very helpful when she starts swallowing them whole. We made an attempt at her trying to swallow one and it really did NOT go well so we’re going to put it on the back burner for a little while before we try again. Also, while she is at a good weight she hasn’t been gaining very much so she’s drinking a nutritional supplement once a day. She loves PediaSure, she thinks it’s a milkshake! So it’s been going well so far. I can’t wait until her next weight check!

For Anna’s 2nd birthday party the theme was fairies! She is our little Tinkerbell so it was a good choice. It was only our immediate families and we all had a great day :) The most special part of the day was that my parents both unknowingly to each other gave Anna a trampoline as her gift, one for inside and one for outside. At her last CF appointment the physical therapist explained to us how great of a therapy tool a trampoline is for a CF kid because it essentially does the same thing as her vest. My dad was at the appointment and I just mentioned it to my mom and next week 2 trampolines show up at our house! It just shows how much everyone loves her by giving her something she loves that is also keeping her healthy! Now it’s like she’s doing her vest allllll day long, I mean all day long haha she loves to jump! She is currently jumping as I write this. She’s going to be the healthiest CF kids around!

Over the past two years I hope we’ve raised a lot of awareness and most importantly we’ve worked for a cure. Every year we will try to grow our fundraising efforts and we’ll never give up. We’re so blessed to have so many people who love our little Anna. You’ve helped us raise over $20,000 in just 2 years since Anna and CF entered our lives. We are so appreciative of everyone loving and supporting our family and every birthday Anna has is a gift for us in part from all of you. Now to look forward to 100 more birthdays for Anna!!

We weathered the storm! Here comes the sun…

945880_4643359211472_1402432070_n

In our last post, I talked about the latest that was going on with Anna. Here’s a quick recap: After a few days of cold symptoms, an x-ray showed pneumonia in the middle lobe of Anna’s right lung. We were presented with a long list of scenarios and were facing a long hospital stay if she didn’t improve. We kept her on an antibiotic, increased her therapies to 3 times a day, and worked hard to get her healthy! It was VERY important to get the pneumonia resolved because it is when the lung is compromised that lung damage can occur, so we wanted to get it taken care of before that had a chance to happen.

It took a few treatment filled (and anxiety filled for us) days but she finally started to improve on Thursday of last week. Since then she improved a little bit every day but I wasn’t sure it would be enough to avoid hospitalization. It all came down to her x-ray. I haven’t felt anxiety like that in a LONG time. I knew everything would be ok and we would do whatever we needed to get her healthy but let’s face it, no one wants to be stuck in a hospital room for 2 weeks! I didn’t want Anna to have to go through the PICC line, or any of it. We spent a few days there last year but this year she is so much more aware and active and talking, I just didn’t know what to expect. I’m happy to say I STILL don’t know what to expect because we have narrowly avoided yet another hospital stay. Her x-ray showed that her lung was GREATLY improved. The x-ray looked completely different! It was the absolute best possible outcome. I’m so proud of her for being so strong and being cooperative during all of the extra treatments. She is our big, brave girl :)

So now, more passionate than ever for a cure, we get to get back to our fundraiser THIS Saturday!!! We are SO excited for Anna’s 2nd Amazing Race. We are thankful to all those signing up and and donating. We officially have more teams than last year and are really excited to hear all these new racers joining! We can promise you a day of fun and laughter for a great cause. Please share our video, send out emails, post on your Facebook page, anything! You will be surprised how many people will respond and regardless of the outcome you are spreading awareness which is HUGE!!

I wanted to let everyone know that when making an account on My Community Events website to donate, all of that information is required to use a credit card, it is completely secure, and the information will be used ONLY for your donation and nothing else! No spam, etc. We will also be taking cash or check donations either before or on race day. All checks should be made out to the Cystic Fibrosis Foundation. All donations are TAX DEDUCTIBLE!!! We have the links to sign up your team and donate linked here. If anyone has ANY questions about donating or signing up please let me know I am happy to help! You can email me using our contact form and I will get any info you need. Just a reminder we still have a team of 2 looking for 2 more members if anyone is short a few teammates! We are so excited to see everyone on Saturday. Thank you for all your support always and for your prayers and well wishes this past week. We couldn’t be more appreciative and we feel SO blessed to have you all in our lives.

Stuck in the In-between

Anna

There has been A LOT going on with us in the past few weeks. First, we’re gearing up Anna’s 2nd Amazing Race and are SO excited to see people signing up and submitting donations! We’re so appreciative and can’t wait to have a great day of fun for the cause closest to our hearts. May is a big month for CF families because it’s Cystic Fibrosis Awareness month. We have Great Strides, the 5K walk run by the Cystic Fibrosis Foundation, on May 4th and then our event May 18th. We’re inspired to work even harder this month after the news we got yesterday…

Jack has been sick with a cold for the past 10 days now and he’s finally starting to clear up. Despite our best efforts to keep her healthy, Anna started showing symptoms last Friday. We called our doctors at Hopkins and even though her last culture was clear, which means she didn’t have any bad bacteria growing in it, they decided to start her on an antibiotic to help her get over it quickly. Things went from bad to worse on Monday and she was really coughing a lot and having a hard time. They decided to switch her to a different antibiotic. We had an appointment at the pediatrician the next day to have Jack’s ear infection checked up on and to have Anna’s lungs listened to. The doctor decided to send Anna for a chest x-ray. Her x-ray showed pneumonia in the middle lobe of her right lung. :(

As prepared as I always think I am or as much I think I know CF I still get surprised by it. I guess I wasn’t expecting it to become pneumonia so quickly, I mean the first time she coughed was Friday and it was only Tuesday! I was worried about Jack having it since he had a terrible cough for 10 days but his lungs despite the cough were perfectly clear. It was just one of those terrible moments where I really understand how differently Anna’s body is on the inside.

Hopkins decided they wanted to see her the next day so that’s what we did yesterday. They explained the x-ray to us and showed us what the pneumonia looked like and we made a plan to get it cleared up. It’s important for us to get her lung back to normal as quickly as possible so that no lung damage has any time to occur. And we want perfect scar free lungs!!! So we are keeping her on her antibiotic and doing her vest for an hour and a half every day. We’re also doing her albuterol and hypertonic saline as usual with an extra albuterol treatment with her extra vest treatment. They’ve given us until the 11th for our next appointment. So for the next 10 days we will be working our very hardest to get this lung healthy! That said, everything we are doing still might not clear it up so we’ve been presented with a seemingly endless list of scenarios.

Scenario 1: The antibiotics and extra therapy does it’s job and her cough is gone and get x-ray is clear at the next appointment. This is the VERY best scenario and what we are hoping happens!! This would mean we go back to life as normal :)

Scenario 2: Her cough is clear but her x-ray still shows the pneumonia. If this happens they’re going to give us some more time and keep the extra therapies going (because sometimes x-rays can take a little time to catch up to her getting better) and if when they do the x-ray again it’s clear we’re back to normal but if it’s not clear then they’ll do a bronchoscopy.

Scenario 3: Scenario two happens and she needs the bronchoscopy. A bronchoscopy is where the patient is sedated (not completely but for the most part) and a scope will be put through her mouth and into her lung where they will remove any mucus build up and clean out the problem area. If all goes well this is an outpatient procedure.

Scenario 4: They do the bronchoscopy and they find a lot of mucus or some cause for concern and decide during the bronchoscopy to admit her for the course of IV antibiotics.

Scenario 5: On the 11th she is still sick and the x-ray is still bad – she will be admitted on the 11th for a 14 day course of IV antibiotics.

Scenario 6: They get the results from the culture back that they took at her visit yesterday and it shows a bad bacteria growing in there they might reconsider and admit her for the IV antibiotics earlier, they should have those results by this coming Monday.

So in the meantime, we’re just doing the only thing we know how to do and taking it one day at a time, doing her treatments and giving her meds. We are VERY hopeful that we can avoid a hospitalization but I’ll do whatever it takes to get her back to 100% and if that’s what our doctors think it will take then that is what we’ll do. The in-between is the worst part because I analyze every sound she makes but I have no real way to know if her x-ray will be clear. At this point I’m just focused on her cough because we know that if the cough goes away then we won’t be admitted on the 11th.

So needless to say, this month means a lot to us to raise awareness and raise money to fund research toward a cure. This current CF situation just strengthens our resolve to do everything we can for Anna now and in the future to let her live the life she deserves, free of this scary in-between and with nothing but a world of possibility in her path.

Thank you to everyone who is signing up for and and donating to Anna’s Amazing Race! If you still need to sign up your team or wish to donate the links are on the top left of this site. Thank you again! We are working hard to get healthy so we can be there and spend the day with everyone :)

Bad Days (and Weeks) Happen

These past few weeks have been really challenging. Two weeks ago I learned of the passing of a young boy with cystic fibrosis, he was just 2 and 1/2 years old. He passed away due to complications from a CF related procedure. Needless to say, this shook me to my core. His mom also wrote a blog, with heartbreaking similarity to this one.  He left behind loving grandparents, adoring and dedicated parents, and a 4 year old big sister.

I work really hard to never let myself go there, to never let the negativity and fear get that dark, to never let the thought that I could live one day of my life without Anna in it enter my brain, for fear that the darkness and fear would take over and change me forever. But when something like this happens I couldn’t help but think how easily it could have been us mourning an unimaginable loss. I couldn’t help but think, what would we ever say to Jack? How would you ever live beyond this?  How would anyone be OK again? I don’t have any of the answers to those questions and I hope with all of my being that I never have to. I have never spoken to this family but I am mourning with them and for them. This is a loss for our bigger family, the CF community, where every CF family automatically becomes a member.  A family bonded by sadness, anxiety, dedication to keeping our kids healthy and to fundraising for our children’s futures, hope, and love.

This is such a transitional, scary, and hopeful time for CF parents. It’s such a mix of emotions because you’re so hopeful that a cure is on the horizon but you’re so terrified of time passing. You just have to pray that we make it, please let us make it to a cure with scar-free lungs.  For now, I can only move forward. I’ve finally begun to pull myself out of the darkness and back into the moment, this magical moment where we are all happy, healthy, and together. I’m soaking up the moments like this…

734431_4329606487850_137314090_n

…and this…

734056_4386092979977_371021673_n

…and this…

62418_4380697765100_111644428_n

…and appreciating how incredibly blessed we really are.

While the past few weeks have reminded us how severe Anna’s condition really is she has continued to be incredibly well. She hasn’t been on antibiotics since January and we haven’t needed any CF related doctor visits. April 1st will mark the 3rd time she’s made it the full 12 weeks in between regular appointments without any surprises in between! I remember the first time they told us 12 weeks, I thought they were crazy and didn’t know how we’d make it that long. Anna has just exceeded all expectations, her weight and growth have both been perfect, all her cultures have been clear so far, and her baseline is still zero meaning she doesn’t have any kind of cough on a daily basis. I guess as her reward to herself for doing SO well she has made us her personal slaves, giving us limited choices but to give in to her every wish at all times. She’s talking A LOT more lately, saying full sentences like her personal favorite “I don’t want that.” She says everyone’s names, Mom, Dad, Jack Jack, Pat (Patches), Mimi, Papa, Ben, RahRah (Sarah), Dampa, Damma,  Poppy, Do Do (Joey), Mack (Max), and Tessie. And “baby” which is the name of every baby doll she owns.  She loves being out and about but also knows how to relax and snuggle up with popcorn and a Tinkerbell movie. She also has a part time job on Thursday mornings working as Jack’s personal towel girl at swim lessons…

830409_4213491465047_678845963_o

So for now we are getting back to taking it one day at a time. We are counting our blessings, soaking up this time as a family, praying for those who are mourning loved ones, hoping for a cure, and being thankful for today.

Boring and Loving it!

IMG_20130110_090154

It has been far too long since I posted on here. Hopefully that situation will be remedied by my Christmas gift from my husband that arrived today, a new laptop! I have a lot I’ve been thinking of writing about: our first week-long vacation with Anna and the immense amount of packing that comes with it, Jack going to pre-school and the good things and challenges along the way, making important decisions on missing out on things for Anna’s health. But all those will come later. For now, I just want to say the most exciting thing I never thought I’d say again… I feel normal.

Don’t get me wrong, it’s not all the time, it’s not even often. It’s every now and then that I catch myself feeling like life is totally normal, and it’s the best feeling. At the time of Anna’s diagnosis and the months following it, feeling normal was one of the losses I mourned. I thought there would never be a time again that I thought I was a normal person, that I would ever have a moment of space in my brain to not be filled with worry and doubt. It’s taken 18 months (and weekly therapy sessions) but I really do have some of these moments. For those still trying to find them, I can say that therapy has been a great help, just having that time dedicated to letting myself process my own feelings that I don’t even have time to know I feel on a daily basis. I can also say that knowledge is power. As I’ve become more knowledgeable about CF and about all things Anna, I feel so much more comfortable in my ability as a parent to handle whatever situation arises. I’ve recently enlisted the help of my cousin who’s graduating from medical school in May to help me learn how to listen to Anna’s lungs myself (Thanks Dr. Musso!). All of these things helped at least give me the illusion of some kind of control. And that to me, feels normal.

That said, normal has been boring. And boring has been so welcomed that we’ve been soaking it up and not posting about how amazing it is. We even had to change our pictures on the side of this page because we’ve changed so much since our last post! So here is an update on what’s been happening with everyone recently:

I am doing my same stay-at-home mommy gig and watching my babies grow up way too fast :( But I’m looking forward to getting things started with the 2nd Anna’s Amazing Race coming up in May (May 18th, mark your calenders!) which we hope to be hugely successful!

Dad is still biking (though notably less often since it is freezing!) but his passion for biking remains intact and he bikes to work every day. He and his friends from high school are training for a Tough Mudder in a few months and expanding his charitable portfolio.

Jack started pre-school in September. He is loving it! He gets to walk there with Dad in the mornings and then Mom and sis walk to pick him up. He’s been learning and making lots of friends. He also does swimming lessons and is very proud to now be an “eel” where he swims on his own with a swim pack.

Anna is still the most stubborn, most beautiful, wildest girl you’ll ever meet. She is getting a lot more comfortable with her vest and breathing treatments. She’ll even do it by herself for the first few minutes. She’s been on her fair share of antibiotics this winter but her doctors are happy that she has responded to all of them. She still hasn’t cultured anything on her throat cultures, which means no bad bacteria hiding out in her lungs. Her weight has been very healthy, it’s truly a blessing how crazy her appetite is since weight is one of the biggest struggles in young kids with CF. We haven’t had any problems in that department, at all! She now takes 5 enzymes with all of her meals and 3 with snacks, an average of around 20 pills a day. All things considered, she is doing GREAT! Our trips to the CF clinic have been extended to every 12 weeks for the past couple of months and she’s been making it that long without any unexpected trips. In fact, the last 2 times we went our “notes” from the doctors have simply said “Keep up the good work.” We will happily take that!

Of course, we still worry since last year she was hospitalized in late February. But we are very hopeful to make it through this winter hospitalization free! And until then, we’ll keep chugging along, one blissfully boring day at a time.