the Hart of the Matter: February 2009

Friday, February 13, 2009

Pray for Avery

Our sweet girl is really in need of a break right now. Yesterday was a long, horrible day. She woke up from her nap absolutely hysterical and was inconsolable for several hours. She vomited a few times and then just passed out (as in fainted) and I panicked.

We spent the night in Children's Mercy getting lab work and a CT scan but the doctor's were not able to explain what caused this particular event or tell us what to do to prevent it from happening again. Welcome to life with TSC.

It took seven sticks to get this IV. Our sweet girl is bruised and looks like a pin cushion this morning.

After a head CT scan to rule out changes with her tumors Avery was so out of it from the sedation meds that she kinda forgot to breathe. She struggled to keep her O2 sats up and needed blow by oxygen for a while.

We are home now, with few answers and many questions. Thank you for checking in on our sweet girl and saying a prayer or two for us!

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Sunday, February 8, 2009

Hurting

My heart aches for this family today.

I have been following Cora's short battle with cancer since Bethany posted about it on her blog. For some reason this precious angel's sweet face and her family's obvious love for her really got under my skin. It just hit a little too close to home even though we are not battling cancer.

Please pray for them and hug your babies a little tighter today. Every day with them is a blessing, not a guarantee.

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Avery Elizabeth

Little Miss Avery is four years old and a true miracle. At four months old she was diagnosed with a rare disease called tuberous sclerosis. She has tumors on her brain, kidneys, heart and skin. In January of '07, a few days after her first birthday she underwent two brain surgeries to remove two of her multiple tumors in an attempt to stop the dozens of seizures she was having every single day. Sadly, the seizures came back a few months after that surgery and we have been fighting them ever since. In September of '08 Avery was diagnosed with autism and in January of '09 doctors added the adjective "severe" to the diagnosis. Despite her challenges, Avery is full of life, curious, and the love of our lives!

Kaylen Rose

Kaylen is seven years old, and the glue that holds our family together. She has an amazing sense of humor for such a little person, and keeps us all laughing. She loves, High School Musical, Hannah Montana and the Jonas Brothers. She is part of a junior dance company and takes jazz, tap, ballet and gymnastics. Kaylen has the biggest heart of any little girl I've ever met. She truly cares about other people, and goes out of her way to be helpful, especially to kids like her little sister Avery, who need that extra help. We are so incredibly proud of her.

I love snow days. I love the way Avery runs her fingers through my hair as she's falling asleep, and I let it grow out just so she could! I love pancakes, waffles, french toast, pretty much anything you can drown in maple syrup. I love Cheesecake Factory Oreo cheesecake. I love some of the goofiest reality shows on T.V. and I make my best friend watch them too, so we can analyze everything that happens on them! I love the shows Little People, Big World and Jon and Kate plus 8 on TLC, The Real Housewives of Orange County, Wife Swap, Supernanny, House Hunters, and last but certainly not least, My Big Fat Fabulous Wedding! I love looking at old photographs of my parents when they were young. I love the way Kaylen pronounces gift certificate - gift cerdickadick -yeah, don't say that one at church! I love when Britton says he will be home at a certain time, and then is five minutes early instead of thirty minutes late. I love it when Avery takes three hour naps and still goes to bed on time. I love singing and dancing (when no one but my girls are around of course!) I love driving in traffic on the interstate, in the city as long as everyone is going above the speed limit!