Spring is in the air!

Every year we dig in our heels, hunkering down for winter, our self enforced lockdown to protect Rylee's immune system. At the point of total, mind numbing, stir-craziness we realize that while we were busy going about the mundane Spring arrived. We begin peeking out the windows, unheeding of the dire prophesy of Punxsutawney Phil the groundhog. The tiredness of sepia tones change quickly - a glorious green begins to move across the lawn, spreading to low lying plants; sneaking up tree trunks, causing limbs to look as though they also stretch and yawn after a long slumber. I find myself humming 'Singing in the Rain' and sincerely feel as carefree as Gene Kelly's character.

Before the big freeze we snuck in a few fun things. Had a great time giving a mom the night off. Our backyard became Camp Davis as we shooed our friend Allison off and giggled all night with our girls and her two-Kayla and Ryan. 'Somehow' (winkwink) Aaron ended up in the tent while RyleeBug and I snuggled into the king size bed. At 2am my cell phone rang, Aaron was raising the proverbial white flag! I slipped out quietly, wondering how our neighbors could be sleeping. From the lantern glow inside the tent it looked like a circus. Think Ringling Brothers and those crazy motorcycle guys in the big call-buzzing round and round, coming within inches of each other, never slowing or touching...now, allow the circle to become the tent, and the kids become Evil Kenevil. Or maybe that was Aaron? Anywho it was great fun-there is nothing like a s'more cooked over the open fire.

During the big freeze we, along with most of our area, went without electricity for a week. Ryann enjoyed being out of school...for the first day! After which she informed me, "I love you and all mom, but you and sissy are pretty boring."


This year marked Rylee's first winter with no major illness or hospitalization. Can you believe that? I still almost hate to type it, afraid of jinxing something intangible-knock on wood when you read that line okay? I think we'll be safe after that.


Rylee had one minor head cold that didn't require antibiotics or suctioning. She finally has a productive and consistent cough, and continues to control her secretions. We are anxious to see our Dr. Jones, expecting her to have fattened up a bit more through the winter months. It also looks as though her hair and legs are now growing at the same speed! If I were a betting girl-I'd guess she's now a fifty pounder, and closing in on big sister in the height department. Rylee's therapists are pleased to see her making small, but steady progress with her visual tracking programs. It still takes us back a bit when we talk to her and she turns her head (and all that hair!), often looking right at us for a minute or so. Keep praying for smiles-that's our goal!

Mr. Dave from Hanger Prosthetics & Orthopedics came out to fit Rylee for bilateral AFOs (layman's terms: right and left feet splints). We also have a night nurse-Miss Darlena comes out four nights a week so that I can get some much needed rest. The first few weeks were tough-after five years of no sleep, your body actually gets used to it! Instead of worrying about Rylee having a seizure in the night and needing help-I have the pleasure of only worrying if Miss Darlena will spoil her too much! Thank you for all your prayers throughout the winter months. We all hate and dread the mandatory house arrest-missing our church family and friends. Please continue to pray that she will have a healthy, happy summer. Can't wait to get the girls out and about. I have the whole summer planned, waiting only for that last school bell to ring!



Rylee's Rally has come and gone. Another successful year! We had eighty full tables this year, with around 75 vendors/agencies represented from our tri-state area. I'm trying to get that page updated too-so be sure to click on the Rylee's Rally logo on the top right side of our family page. It will take you to the rally page for pictures. I cannot say enough what a pleasure and blessing it is to meet the families, vendors, volunteers, and sponsors each year. 2009 marked huge community support-allowing us to feed around 750 people free of charge, add fun activities to the day, awesome door prizes for our families, and volunteers that remind us that people when given the opportunity will rise to the occasion. Aaron and I were able to hold and love on some of the kiddos that we've prayed for, talked to the parents over the phone with, or visited on the hospital floor. We are constantly reminded that 'love conquers all' and makes us all wonder what could happen if we fully surrender to it. Please continue to pray for these remarkable, inspiring families.


Meeting Teri w/Adaptive Star-the folks who made Rylee her Bug-Mobile. She flew in from Washington state with products for the families to try out at the Rally.

www.ryleesrally.blogspot.com

Ryann is approaching the big seven-and counting down to her fall birthday. She lost her first tooth this weekend, waking up in excitement upon discovering the ToothFairy left pixie dust in her tooth bag and a $2 bill. Inflation! At the risk of sounding 85 years old, I remember when you only got a quarter. She is now reading everything coming and going-tackling level 3 and 4 books with ease, barely slowing over a difficult word. Ryann also writes, and writes, and writes-and will allow us to throw away nothing. Aaron and I often find sweet notes tucked into a cubby or under pillows-and as the mother I am occasionally subjected to the 'I am sad, you don't love me, I'm planning a walk about in Australia and may never return.' (roll eyes) Yes, my child is entirely too intelligent-but hilariously melodramatic! Usually these notes crop up around chore and/or homework time, or whenever Sophie needs the pooper scooper. Ryann has discovered a love for Captain Underpants books-reading them and then putting on plays for daddy, momma, and sissy. (At some point she will read this blog as a teenager, this photo alone causing weeks of teen angst! giggle) Below is Ryann as (drum roll please)...Wedgie Woman!


Sophie recently became an unknowing art project of Ryann's. Our poofy-mop like doggie was 'decorated' with glue and bows. When Ryann told me she was working on 'impressionist art' I thought she'd draw a face picture-nose on forehead, ear on chin...not glue all over, bows on dog bum! giggle Sophie looked like she had mange! After a traumatic trip to the groomers, our little Sophie now looks like a Schnauzer. Good news? She can see and no longer runs into walls. Bad news? Um, she's embarrassed to go outside! She looks like the before and after shots on those 'My mom is stuck in the 80's' makeover segments. sigh Life is not dull around here!


That's all...for right now! Please continue to pray for our girlies-their overall well being in every area. Pray for Aaron as he works long days to care for us. Remember too all our friends and their families. The Fitzpatricks honored little Fiona's first birthday in Heaven with their other two daughters. Katie and Maggie are doing well in school, but missing their little sissy. After a long winter of hospital stays and separation (dad Mike, is currently stationed in WV for work) the McLaughlin family is spending this week at Give Kids the World/Disney World on Ellie Kate's Make A Wish trip. (Shout out to our Disney RyleeBug Groupies-hug 'em all for us! We miss all our WishLounge girls and our Wish Fairies!) LivieLou is venturing out with her mom and dad-continuing to progress with her vocalizations and charming the pants off everyone in Maine. Our man Trenton is sitting up big and tall-and breaking hearts with that pouty lip! The Laneros are enjoying time with their little man, Marc-Philippe, watching as he grows big and strong-such a happy little guy (give him a kiss from his Tante Deb)! Please keep them all in your prayers. Each family has meant so much to us-encouraged us when we were down, reminding us to be ever thankful and watchful for the little things, sharing their joys and sorrows with us, trusting us with their hearts. How grateful we are for special friends.

We can't wait to see everyone this summer and are so thankful to friends and family, and special aunties, who've helped us weather another winter.