"For you formed my inward parts; You covered me in my mother's womb. I will praise You, for I am fearfully and wonderfully made; Marvelous are Your works, and that my soul knows very well. My frame was not hidden from You, when I was made in secret, and skillfully wrought in the lowest parts of the earth. Your eyes saw my substance, being yet unformed. And in Your book they all were written, the days fashioned for me, when as yet there were none of them." - Psalm 139:13-16
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1.04.2008

"Spa Night"


The girls and I enjoying a homemade "spa par-tay."
Rylee enjoying some foot massage, with her hands all toasty in their paraffin dip.


Rylee getting "gussied" up...as she pucker ups.


Poor Aaron, he doesn't stand a chance in this house full of girls!
No girls night is complete without snacks and a movie.
We watched Ratatouille...for the one hundred and eighty third time!


Time for our close up...and bed.

12.31.2007



Aaron and I had a great date night this month-we attended our friends' wedding and then followed up with the reception at the Frederick. We couldn't resist having our picture taken in the old, original shoe shine stand. It was fun to have "grown up" conversation, catch up with old friends, and remember what we were like as newlyweds...eight years ago!
December has been filled with visits from friends and family, fun, and good health. It still amazes us that Rylee has made it through another year. While her disorder and its symptoms are devestating-God has allowed us another year to love her, care for her, get to know her better. Considering everything she continues to have good health, and is growing steadily. We think her hair and legs are in a race with each other-which can grow longest, the quickest! Amazing to think of all the things we've had the opportunity to do this year. A Make A Wish trip to Give Kids the World and the Magic Kingdom-priceless memories. Rylee finally got her long awaited, and needed, slot with the state's Waiver-huge answer to prayer. God continued to put the right people in our life-not a moment sooner than He planned. We travelled to the NKH conference and met some of the wonderful families we met through email. To touch these children, love on them, gain knowledge and encouragement from their families meant so much to my mommy heart. I cannot express enough what these mothers have meant to me...but to be able to hug them, sit down and chat about our precious children...wow. Rylee went into the school system as a home bound student. Both of my girls now attend school! Rylee's old enough to be in school! Can you even believe that? Her doctors and their staff continue to spoil us with their love and care. We did a family "road trip"-taking the girls RVing through Kentucky, Maryland, Pennsylvania. Visited Six Flags, Hershey Park, Sesame Street. Roasted marshmallows over an open fire, searched for shooting stars in the pitch black sky, discovered the pleasure of not being in a rush...taking the back roads. Took lots of pictures and made wonderful memories! Raised money on Rylee's birthday for Make A Wish. We so enjoyed celebrating her big THREE with those sweet bikers! They looked rough and tough on the outside...huggie bears on the inside. Ryann is doing so well in school. She loves taking an active role in Rylee's care. I left Rylee on the floor, wrapped in a towel after a warm bath. While I went to get another towel (for her HAIR!) Ryann decided to powder Rylee up....ALL of Rylee! For a week every time we patted Rylee's butt, powder puffed out everywhere. But, Ryann was so proud of herself. Aaron and I take joy in seeing her interact with Rylee, read to her, "decorate" her, love on her, share secrets. We are still amazed that God would entrust us with these beautiful, unique, precious little girls.
I don't know what the next year will bring for our little family. We are praying that God will grow our family more-we still have plenty of love to go around. We are praying for continued time and good health for Rylee. We are praying for God's blessing on our lives. A continued commitment to draw closer to Him, and in turn to draw closer to each other-as a couple, as parents, as a family. We pray God will continue to open doors-allow us to touch more lives, show Him more fully to those we meet. And we pray for each of you that read this-that in some small way God will remind you to appreciate what you have, take joy in the little things, and to live each day to the fullest. Love big, love full, love hard, love through everything.
Aaron and I pray that God will bless you and your loved ones in the upcoming year. We look forward to seeing how He will work in our own little family's life. We pray that He will bless you as fully and completely as He has us.
"And my God will meet all your needs according to his glorious riches in Christ Jesus."
Philippians 4:19

Happy New Year's and God bless-
Aaron, Deb, Ryann, and Rylee

12.21.2007

Ryann, in pajamas, at school. "Polar Express" day...complete with a conductor.

Me and sissy.





Rylee hanging out at the "girls night."

Ryann and Hannah are five and six..and Rylee's almost as tall as them!



Hannah (Angie's daughter), Ryann, Angie (founder of the LadyBug Club), and Rylee

Hard to believe the year is almost gone. So much has happened this year...not the least of which is healing. While holidays are still very bittersweet for us, we are so thankful for our week with Kaymaen, another additional year with Rylee, the growth and maturity of Ryann.
We've had a busy few weeks. I saw a friend tonight, a dear "Valley girl", who asked if everything was okay. Quickly reassuring her, she said, "I check Rylee's post every day and you haven't written lately." It's such a joy to know that so many people still check in on us, still care, still pray for us daily. Amazing more to know that people would take time out of their own hectic schedules to read some little thing I've written. Thank you for "listening", er, reading.
Ryann is out for the holiday break. A group of parents went in and re-enacted the "Polar Express." Of course, yours truely dressed up as the conductor...complete with moustache and Boston accent. I think all us moms enjoyed it as much as the kids. As I left the morning party, Ryann rushed up and whispered, "I know you are really my momma. Will you tell yourself that you are the best mom ever?" I went and pumped gas (you should have seen the people stare) and headed over to CHH Peds floor. Halfway there got a call that RSV was on the floor. So, I didn't get to do the story for them. I compromised and stopped off at Ryann's old school and did it for last year's teacher. Then hopped into the special needs classroom and did a photo op! It was so much fun to get grins out of the kids. They especially loved the train whistle. Then, I raced home to clean up for the afternoon party. One long shower, during which I think I ripped the moustache off strand by strand!, later-I was headed back for the last hoorah. Ryann made out like a bandit. I had to help her carry all her loot and crafts in.
Rylee is finally getting all of her therapists lined out. It's still confusing who comes from Waiver and who comes from the school-but I'm learning. We've been relieved and pleased with the care the school board has given her. Her teacher has a special needs child of her own. Mrs. Lisa seems especially sensitive to Rylee's needs, and is constantly striving to think outside the box. Mrs. Terry takes care of speech through the school and loves to spoil Rylee with dum-dum suckers and other gadgets. Sherry is back on our team, and has been teaching me about fascia release and how tissue can affect structure. Very interesting to learn new things, and see how it relates to Rylee's specific needs. We still don't have a physical therapist or a night time nurse-please continue to pray in this area. Rylee continues to do well. Her thighs are chunking out nicely (compliments of Enfamil). We tease her and say we are putting her on Jenny Craig at the first of the year! Aaron and I had a great time Christmas shopping for her this year, and can't wait to try out some of her new therapy toys.
I'm still volunteering time when needed at the hospital. It's means alot to me that the medical staff trusts me enough to help families. It feels like I'm helping Rylee and Kaymaen count...like sharing our experience and knowledge may impact and make a difference in another family's life. Please continue to pray that I will have a willing, compassionate heart and that God will open more doors for us to help others. Also, pray that our special needs nursery at church will grow. Rylee and Mason are ready for more playmates!
Aaron works constantly as always. Between work and his work at church things have been a bit hectic to say the least. We did fit in a date night last weekend. Attended a friend's wedding, then the reception at the Frederick. We had a great time visiting with friends we don't see often and just being together with each other. I only called once to check on the girls! Aaron has been fielding some of Ryann's more amusing comments. When he got back from D.C. a few weeks ago-Ryann had saved 'em all up for him. Right out of the gate, she side swipes him with, "Dad, we gotta talk, this is serious. My boyfriend wants to take it to the next level." Before he collapsed, I put his tongue back in his mouth and told him to stay calm! (You should have SEEN his face! grin) Seeing her Daddy's looks of sheer terror, she quickly reassures him with, "But don't worry Dad, I told him I'm not ready for that type of commitment." All's well in the house again! giggle
I will try to post pictures again soon. And thank you for checking in on us, and continuing to pray. This has been our best year with Rylee yet...seems like each year gets sweeter.
The Fam

12.11.2007

12.06.2007

Bedtime in our house...Ryann is so proud of herself.
She loves reading to Rylee and Remy!

'There was an old lady who swallowed a shell...'





"For Thou didst form my inward parts; Thou didst weave me in my mother's womb. I will give thanks to Thee, for I am fearfully and wonderfully made; wonderful are Thy works, and my soul knows it very well. My frame was not hidden from Thee, when I was made in secret, and skillfully wrought in the depths of the earth. Thine eyes have seen my unformed substance; and in Thy book they were all written, the days that were ordained for me, when as yet there was not one of them."

Psalm 139:13-16