Thoughts on Coughing

Madeline has had a cough pretty much every day for about 3 months. I know it's related to her Cystic Fibrosis but I would think that the constant antibiotics she's on would take care of it and give us at least 1 week of respite. When I say "us" I mostly mean Madi. As soon as she is off of abx she gets a cough within two days and then is on abx for another 3 weeks. The cycle continues with no end in sight. I feel like we're just going in a big circle. I look at her pictures on my desk and see a beautiful, healthy-looking baby girl. In reality she fights thick mucousy coughs, nasal congestion that keeps her up at night because she can't suck her beloved thumb, and uncomfortable breathing treatments 3 times a day that require her parents to beat on her little body. I hate this aspect of her disease - that it never seems to give her a break. She will never know any different and for that I am greatful. She'll never know what it feels like to be truly healthy. She won't know what life is like not having to worry about finding an electrical outlet so that she can do her breathing treatment when she's at camp or at a friend's cabin. She won't know what life is like not having to get a suction hose shoved up her nose into her lungs to take a mucous sample at every doctor visit. She won't know what life is like not having to take enzymes at her desk before she eats her snack at school. She won't know what life is like not having to worry that kids will tease her because of all these things. I hate that she has to be a fighter to survive. I hate that she will have to wonder if she'll survive long enough to see her own children grow up. I hate that this disease threatens to take her away from us way too soon. I hate it, I hate it, I hate it.

Slip Slidin' Away

Tonight Madi started moving in a manner closer to crawling and less like spinning in a circle. I think it was because she was on the slippery kitchen floor where it's easy to slide around. She was playing on the carpet with measuring cups and an egg separator while I was doing the dishes. I turned around to check on her and she was all the way off the carpet and moving around the kitchen floor. She kept throwing the egg separator and then she'd pull herself close to it to grab it only to throw it again. This little game kept her busy long enough for me to get the dishes done. She was in such a bad mood this evening b/c she missed her afternoon nap for some reason. The triumph of locomotion made her a very happy girl again - the happy girl we most often see. Of course, I got out the camera and the video camera to document this monumentous occasion. So proud of you, sweet girl.

Pooped Out

I came home from work today with Curt standing at the top of the stairs, holding the dog to keep her quiet, telling me to "Shhhhh." I crept up the steps and found this in our living room! A little girl that pooped herself out. She has never fallen asleep in a contraption before. Only her swing, papasan, carseat and crib - all things meant to lull babies to sleep. She's also dressed in her new Hanna Andersson and Robeez. She looks so cute, doesn't she?

I love my Jumparoo!

Cousin Fredrik has shared his Jumparoo with Madeline and we are all so glad! Madeline has loads of fun bouncing up and down while playing with the toys on the tray. She has figured out that if she locks her knees she stops bouncing right away. It's hilarious to watch her bounce, stop suddenly and look at us and smile. She seems so proud of herself. Daddy and I are pretty proud, too.

Happy Labor Day

Happy Labor Day to everyone! We enjoyed our day running errands - including a trip to Babies 'R Us to get baby gates. Madeline is almost crawling and we want to be prepared. Curt had an exciting rescue call this afternoon where he helped a man who had a heart attack while driving through Rockford. Curt held his head while his fellow rescuers performed CPR. They revived his pulse a few times before the helicopter landed and the Paramedics took him to the hospital. We are praying that he makes it. Madeline has gotten so big. Sometimes I catch myself looking at her in awe, wondering where the last 7 1/2 months have gone. One of those times was today. She was sitting on the floor playing when I couldn't believe how big she'd gotten. Here's the most recent photo of our little princess.We hope all of you stay safe this Labor Day! And, for those of you going back to school tomorrow, I say...I'm glad it's not me :)