Up and Running

What a month we've had! The holidays have come and gone (healthy for all, praise the Lord!) and we officially survived the Snow and Ice Storm of 2009...courtesy of our new Troy-Bilt generator. As we begin another new year-we wanted to begin with thanking each of you. The continued encouragement and prayers mean so very much to us. While some of you may never meet us, touch Rylee personally-your emails, web posts, notes, calls, and cards have touch our hearts. To those of you locally-can't wait til Spring when our mandatory house arrest is over and we can get out and see you all!



As is obvious from the photo, Rylee is getting so big! In the past month she has cut four additional teeth, only one more to go...of course that one would have to be in the front! She is doing great in her new wheelchair, acclimating well to the more upright position. Having her head in midline also enables her to look around more, and she's gaining ground on visually tracking objects and us on a more consistent basis. Aaron and I laugh because it seems so strange to see her big and tall, positioned correctly, and actually looking at us! While it looks a bit like a KingsIsland ride, we think she rocks it out! She gets fitted for AFO's (feet splints) this month, better aligning her feet and taking some stress of her hamstrings. I've stocked up on crazy knee socks to go under the splints (see above) because honestly...being handicapped is no excuse for poor fashion! We had her yearly meeting (IEP) with the school who has accepted our request to continue homebound schooling-meaning we will still have a teacher once a week and all our therapies maintained during school months. We will be transitioning into kindergarten...kindergarten, can you believe that?...which means a new teacher. Please begin praying now that God will once again send us the right person to give Rylee the best care possible. We are rather spoiled-our teachers, therapists, medical team treat us so well, change is always tough. The new year begins our third year without a constant night time nurse. Her Waiver budget allows for us to have a nurse at night to monitor her seizures, keep her clean and dry, and do medications and tube feedings. Our problem? Keeping a nurse! I could give you all the Jerry Springer/Days of My Life/All My Children without Susan Lucci details but it's too crazy...seriously! Cliff Note version-please pray God will send a special lady to care for Rylee like family. Our PICU nurses, home health nurse Becky, Roma & Darlena with Hospice, and Nurse Valerie have ruined us! How can one settle for the rest, when we've had the best I ask you?!
This really is a huge need in our life. Since bringing Rylee home four and a half years ago, I've been the main caretaker, while Aaron provides for us financially. On a good week, I get around four hours of sleep each night. When she is sick it's usual for me to go a few days without any sleep at all. Having a nurse here at night means Rylee continues to get realistic compassionate care...and I can get some beauty sleep! Believe me, I'm long overdue!


This is a great pic of Rylee in her wheelchair-with all that gorgeous hair! Rapunzel's locks are now down the entire length of her back. Big sister Ryann has cut her hair twice (12 inches each time) for Locks of Love...but I just can't bring myself to cut RyleeBug's hair yet. Her curls are too pretty!

Smooches between the girlies. sigh. Seriously, how gorgeous are our girls?!

One of our Christmas gifts was a web cam for ourselves and Rylee's best buddy, LivieLou in Maine. Angie and I have had such fun talking, and letting the girls 'grouse' at each other. Livie and Rylee are eight days apart in age, and she has the same disorder. We had the awesome opportunity to meet them this summer through Make A Wish. What a sweet family-just wish they lived closer!

As mentioned earlier, we survived the Winter Storm of 2009. We were without electricity for a week. Certainly makes you thankful for the small things...um, like heat! Our electric was turned on right before the Super Bowl party. Aaron and the girls watch the big game each year.

Super Bowl 2007-Rylee had a 'wardrobe malfunction' right before and didn't make it to the party. Actually she had a huge blow out (as in up her back and out the sides of the diaper) and promptly became Rip Van Winkle!

Super Bowl 2006

Daddy curled up with all the girls for Super Bowl 2008. Poor Aaron...even the dog is a girl! Sophie likes to look after Ryann and Rylee, and doesn't like to miss out on anything.

Ryann and Sophie couldn't wait to get out in the snow. This was her first year to go sledding. We all had a few runs on the 'Saucer of Doom' (aka the garbage lid) and Aaron and I were reminded the next morning of how old we are getting! Ryann loves school. She also has become quite the little artist-drawing on, and consequently saving, every scrap of paper she comes across. Her room looks like a recycling center! She also has a new 'friend.' "Senor Pepe" prefers KLove, is a vegetarian, needs water before bed, and loves long walks on the beach. He also likes to be addressed with a Spanish accent even though 'no hablo en espanol.' Ryann opened her first savings account, which like all things Ryann was an adventure in and of itself! I have no idea where she gets her flair for the dramatic! (no comments from the peanut gallery! grin) The teller was very kind, speaking to Ryann as though she was a six year old...not a twenty year old trapped in a six year old body. Mistake numero uno. (Maybe Senor Pepe is rubbing off on me!) She asked if Ryann wanted to open an account for her pennies, to which Ryann responded while plunking down close to $80,"No ma'am, I need to open a savings account." The teller says, "Are you going to buy lots of Happy Meals?" Ryann gathers herself up, tilts her head a bit higher and says, "No ma'am, I'm saving to travel abroad. I want to visit Paris and maybe Venice before it's underwater." Yeah...I know, we can't even begin to imagine the teenage years!

Hope all our groupies like the new layout and design. Felt like we needed a bit of an update. Be sure to keep posted on Rylee's Rally 2009. Looks as though we will double our numbers for last year, meaning around 100 vendors this time around. Please begin praying now that God will once again open doors and hearts in the community. Pray the Lord will use the day to minister to other families like our own-parents desiring to give their children the services and care they desperately need and deserve. Aaron and I are also praying that God will allow us to serve special needs families year round, as a couple. He's already laid a specific idea on our hearts-pray we can wait on His leading and timing, and have discernment to know the right way to go about achieving it.

We will keep you updated! And again, thank you for continuing to take time out of your own hectic schedule to check in on us. God bless!

'Only a life lived for others is worth living.' - Albert Einstein