Ella Mae

Today was Ella's second birthday. I can't believe that my baby, the most beautiful little girl in the world inside and out, has already been with me for 2 years!! Shes a total girl, walking around with her Yankees dress on, nails painted and a cell phone tucked under her ear. She carries a purse around telling me that shes going shopping and will use her money (old hotel key) to pay. She talks and talks and talks and talks and talks and I love to listen to her. She reads stories to her dolls and makes sure to tuck in all of her babies when its time for them to go to bed. Although it seems to be a delay tactic, she must kiss everyone in the house goodnight before she can go to bed - mommy, daddy, lily, drew, and whichever grandma currently resides. Shes such a sweet and loving little girl and I love her to pieces.

I thought she was a boy until the doctor said "Its a GIRL!" and right then and there I couldn't have been any happier to have a little girl. I loved having a girl. I love having Ella. She'll always be my baby. Here are a few pictures from the past 2 years that remind me of some of our favorite times together.

Happy Birthday sweet girl! I love you!

37

I'm going to write this because I know people want to know and I don't really want to talk about it. I'm ok writing about it and I won't mind one bit if you comment, I just don't physically want to speak about it.

A little boy died today. His name was Connor. He was only 7. And he fought CF everyday of his short precious life. You can read about him at www.notsobrightandshiny.blogspot.com. It will break your heart. I never knew Connor. I don't know his parents. But I can't get them off my mind today.

On Tuesday when I met with Valerie Abati for our News 5 Interview, she asked me how I felt about the median age for survival with CF being 37. I danced around it a bit by saying things like "well that is just the average, many people live much longer" and "20 years ago most kids didn't live through adolesence so I can only hope that in 20 years the meadian age will be close to 80". What I wanted to say to her and to everyone is that I'm terrified. I do cry about it. I rock him extra long at night, Martin has to make me put him down. I want him forever and I don't want to think or talk about an end. I don't want to be niave but I also don't want to be debbie downer; I don't want to ruin our lives worrying, I just want to enjoy every moment that we all have together, treat Drew like everyone else. But deep down I am scared and I just want everyone to know that.

Recently I've been so up and down on how I feel about CF. Somedays I'm so hopeful, reading about all the new treatments and research going on. Other days I catch an article on how CF is way more complex that we ever could have imagined and its going to take forever before a true cure is really found. I know people and know of people who are in their 30's, 40's and 50's who are living with CF. They have had lung transplants, take dozens of medications every day, and spend weeks at a time in the hospital every year, but they are alive. I know people and know of people who never got to see their 2nd birthday, never made it into adolesence and never got the chance to experience the life that you and I take for granted.

I wonder why Drew got this disease. I'm not mad about it. Maybe God knew what wonderful family and friends we have and just needed that one more family to raise awareness and support to find the cure. Many people have told us that God doesn't give us anything we can't handle. I think we can deal with him; I just don't know if i'd be able to deal without him.

The Latest News

As I had mentioned in my previous post, a new fundraising effort by the Cystic Fibrosis Foundation known as The Finest Young Professionals, kicked off this week. We offered our support by sharing our story with 3 of the nominees so that they could learn a little bit about the disease that they are fundraising for. One of the nominees that we were paired with was Valerie Abati , a meteorologist for Channel 5 here in Cincinnati. This afternoon she came to our house to interview me for a story she was doing on Cystic Fibrosis and her fundraising efforts. Click here to see the interview.

In other news, we are home from the hospital and doing great. Somewhat remarkably, you can hardly even see his scar. Its been 12 days and the little man has healed so remarkably well. It is a little funny (for us, not him) when he poops because he strains every muscle in his little body to squeeze out a tiny little bit of poop. The doctor said thats normal as he gets use to using the thirteen different muscles you use to poop (I know, who knew!). Hes getting the hang of it though and is operating the way hes supposed to.

Ella turns two a week from today. TWO!!! Holy crap! Where have the past two years gone! I couldn't have asked for a better little girl. Her smile brightens my day and I can't imagine my life without her. Even though some days seem to drag on forever, the years sure do fly by. I asked her what she wanted for her birthday and she said Pop Pop. I got her a dollhouse; hopefully that will suffice.

Lily is also doing well. She pushes up on the ground when shes on her belly and holds her head high while looking around. She'll be rolling over in no time. I'm definitely not ready for the two to be mobile in any capacity. I think I have it hard now! She loves "talking" to you when you coo and goo at her, echoing your sounds and smiling with a grin from ear to ear.

Things are getting better. The first three months were not fun. I'm not saying we're having fun exactly, but its not so bad anymore and hopefully it will continue to get better.

Cincinnati's Finest Young Professionals

The Cystic Fibrosis Foundation has many events every year to raise funds for and awareness of Cystic Fibrosis. Earlier this week, one of the event directors at the Cincinnati branch of the Cystic Fibrosis Foundation reached out to me to tell me about an event taking place over the next 12 weeks, and asked if we would be interested in helping out. Here is a little bit about the event, called Cincinnati's Finest Young Professionals:

"The Cystic Fibrosis Foundation of Greater Cincinnati recognizes that there are many outstanding young professionals in the Tri-State area who exemplify outstanding leadership qualities, are very active in volunteer roles and have excelled in the business community. The CF Foundation will recognize the “cream of the crop” at the Inaugural Cincinnati’s Finest Finale. The event is designed to spotlight Greater Cincinnati’s most influential trendsetters, honoring their professional and charitable accomplishments. Up to 25 young professionals, chosen by a Judges Review Panel, will use their talent, compassion and leadership qualities to further the mission of the CF Foundation: to assure the development of the means to cure and control cystic fibrosis and to improve the quality of life for those with the disease. Candidates will embark on a 12-week fundraising blitz in their quest to be THE FINEST YOUNG PROFESSIONAL IN THE TRI-STATE!" (www.cff.org/chapters/cincinnati)

Here's how we are involved. Most of the nominees have no connection to CF. To make their fundraising efforts more personal, we were asked to share our story with 3 of the nominee's. I told them how CF has affected our life and shared with them some of our hopes and dreams for Drew. I provided some information to them on the disease that they know very little about and hope to raise their awareness so that they in turn will raise awareness as they work to raise funds and become Cincinnati's Finest Young Professional.

I have offered to help them any way I can over the next 12 weeks, so stay tuned. There will likely be different events all over town to raise money and awareness, and I would love to have some of my family and friends participate in whatever they are able to. I will let you all know sometime soon who the 3 nominees that we are working with are and how we can help them to become the Finest Young Professional in Cincinnati.

Lovely Lily

I feel like Lily often falls through the cracks and I'd like to take a minute to acknowledge her. We admittedly spend a lot of our time and energy on Drew, and Ella dare not let you forget that shes around, so Lily is the one who seems to get pushed aside until a set of hands are free.

Lily has a personality all her own. I believe she will be my diva. Shes got the most crystal blue eyes you'll ever see. They look like glass. They are so beautiful. Her smile can make the worst moments turn around. She was with us at the hospital when we had to take Drew in for surgery, and she just smiled and smiled at me while we waited for the doctor to tell us everything went well. She got me through.

Lily has cheeks so chubby that they appear as though they will burst when she smiles, but that makes her even cuter. Her thighs match (cute now, but hope they change as she enters adolescence).

Lily will already mimic different sounds that you make. I will often hold her on my lap and coo and goo at her and she smiles and repeats the sounds, and squeals with delight. Shes so strong, holding her head up so well, and pushing up off the ground. She will be rolling over in no time.

I wonder what Lily will look like in a year. Her hair seems to have a red undertone, but Ella was born with black hair and look at her now. She does look an awful lot like Ella, I just don't imagine another Ella, I imagine a Lily.

Lily loves being held. She loves to walk or rock or bounce, and she loves being sang to. And lucky for her, I love holding her.

Lily has her moments, but don't we all! Shes a precious little thing with a smile that lights up my world and I wanted to acknowledge her. Here's to you, Lovely Lily Grace! Love you!

So Now What?

We're home! Surgery went great on Thursday, and despite a few pain issues Thursday night and into Friday, we got everything under control and started the healing process. On Monday morning, the doctors decided that we could start to feed Drew again. Everything went well for 24, and on Tuesday at about 11am they sent us home!

Drew has a 2 inch scar across his belly right above his belly button. Other than that you could never tell anything was wrong with him!

Somewhat luckily, we were able to jump right back into the routine at home. If there's one thing I can say about all of my kids is that they are great sleepers. Around 8 weeks, Ella started sleeping through the night and continues to this day. I'm talkin' 8pm to 8am; seriously through the night. I think I can count on 1 hand the number of times she didn't sleep on that schedule. The twins started their overnight sleeping closer to 10 weeks. They both go down sometime close to 10 and get up between 6 and 7. I can conquer the world if I've had a good night sleep, so this is a quality that I greatly appreciate. In the hospital, nurses and doctors were poking at Drew every few hours, so I was afraid that his schedule was going to be all screwed up when we got home. Not the case. He was in bed at 10pm and woke up crying at about 10 after 7 this morning. There isn't a strict schedule during the day. They eat when they are hungry, they sleep when they are tired. Its the nighttimes that are a gem that I cherish.

So now what! We have no impending surgery. We have no impending threat of a leaky ostomy bag. We still have special recipes for mixing formula and measuring out medicines, but thats almost second nature at this point. I guess we start our "normal" now! Hopefully the summer will bring picnics with friends, trips to the park, and visits with aunts, uncles and cousins.

I'm still nervous about germs, and I'll always be. I talked to Drew's CF doctor about this and she said thats totally normal, and appropriate. Right now as his handlers, its critical that we have clean hands. Hands are the #1 way germs are passed. We have tons of sanitizer around and go through lots of soap. We have a "no touching Drew without first washing your hands" policy. I have a note attached to his carseat that says "Please wash your hands before you touch me". Once Drew is mobile, there will be lots of Clorox wiping of doorknobs, toys, and whatever else a little boy can get his hands on. We can't prevent him from ever getting sick, but we can do our part to make sure that unnecessary germs aren't causing unnecessary harm. It might come across as a little crazy to people who aren't dealing with this, but if it were your baby, I have a feeling that you'd act the same way.

So please don't judge. Please wash your hands. Its still taking some adjusting being forward with everyone and asking them to wash their hands before they touch him. If you're sick, please don't put us in an uncomfortable situation of asking you to stay away (because I will). Theres a general 3-6ft rule that we were advised to follow if feeling under the weather. If we have to cancel something at the last minute, please don't take it personal. Its Drew's life we're talking about. We're going to live as normal as we can, but this will include a lot of precautions...and hand washing :)