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

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

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...'

spe·cial–adjective
1.of a distinct or particular kind or character
2.being a particular one; particular, individual, or certain
3.pertaining or peculiar to a particular person, thing, instance, etc.; distinctive; unique: the special features of a plan.
4.having a specific or particular function, purpose, etc.
5.distinguished or different from what is ordinary or usual
6.extraordinary; exceptional, as in amount or degree
7.being such in an exceptional degree; particularly valued

Often when we are out as a family we are asked by strangers, "What's wrong with your child?" Not really wanting to use up our family time educating the masses, I normally reply, "She's special needs," knowing that most people have never heard of Nonketotic Hyperglycinemia. There are many terms used for these little kiddos-disabled, handicapped, developmentally delayed/challenged. Uncaring people call them useless, retarded, vegetables.
Aaron and I have found "special needs" to fit Rylee. It doesn't negate her symptoms, the severity of her disorder, but rather recognizes and celebrates her uniqueness.
One of the dictionary descriptions uses "special" in context-"the special features of a plan."
How can anyone not look at this precious little girl and not see her life as extraordinary, of exceptional degree? God has used her to remind each of us of His unconditional love, mercy, and grace. Rylee's life has been one special feature in His Master Plan for our life.
Jeremiah 29:11 "For I know the plans I have for you,' declares the LORD, 'plans to prosper you and not to harm you, plans to give you hope and a future. "
God has taught us so much these past three years, and continues to grow us up a bit more in Him.
Your thoughtful nature causes health issues because you worry too much. (Have you noticed all the prescription drug commercials lately?) Your generous spirit means high interest payments on a credit card, or two. (Do you really need to buy a Christmas gift for your cousin twice removed?) Your love for others means you are frequently disappointed. Your hopeful attitude (Pollyanna) causes you to neglect the future, be unprepared. Your availability to others sacrifices your time at home with your spouse or children. Your excitement for life can cause for some misadventures (think bull in a china shop). Your strength of character conceals a prideful heart.
There is a special gift that God gives each of us...yet, we need His guidance to reach our full potential. Honestly, if you think about it...we are all "special needs" in some way.

Lessons I've learned as a mother...
The more pregnant you become, the more stupid people get.
Whatever can go wrong, will go wrong-at the worst time possible.
Case Study #31 - Ryann and Rylee at JcPenny's getting a formal portrait made. Rylee had seizures then filled a diaper and the fake fur background, and Ryann didn't like the photographer so she cried during the whole photoshoot.
You don't need to worry so much-it doesn't help anything.
It's okay to tell your child, "No." (gasp)
Poop does not abide by the rules of gravity.
Case study #15 Rylee can poop in all directions. Sort of like the part in "Forrest Gump" where he talks about the rain..."She can poop up, and down. Sometimes the poop came from side ways." You get the idea.
You lose all privacy.
A child will bring a parent bread and peanut butter into the bathroom and ask if you will make them a sandwich. Fingers will easily fit under all doors, accompanied with a tiny voice saying, "Hey momma, whatcha doin' in there?"
Understand and accept that someone will always stare at your special needs child. That's why I made Rylee a shirt that reads, "Please don't stare, I already get enough therapy."
Always read all the pages in that bedtime book.
Laughter will get you through just about everything.
A child will always want to jump off a bridge if their friends are doing it. Why do moms still ask that question?
Don't sweat the small stuff.
Case study #62 Ryann went to daycare once wearing winter tights, pink Chuck Taylor tennis shoes, a ballerina leotard and tutu, Jezebel dress up earings, and her hair in sixteen different braids...in the middle of winter. Ryann thought she looked, in her words, "rabishing."
Case study #62a The same day, she "decorated" Rylee in no less than six dress up outfits, 23 stickers, "Hooker Red" nail polish, and every set of costume jewelry she owned. Rylee looked like a drunken gypsy, but Ryann thought she looked, "ebsquiddit." -translation, exquisite
A child cannot die from eating dog food.
Playing in the rain, and subsequently the mud, is fun. Clothing can be replaced, the memories cannot. On a side note, kids can get worms from eating dirt-not a personal story, but definetly one to note.
Always carry a spare change of clothing/per child, in your car...and diapers, and wipes, and Purell, and lotion, and sunscreen, and stroller, and socks, and pacifier, and Distat (okay that's just for special needs families!), and a list of those all important emergency numbers
Stain Kilz can cover up almost anything, except for those greasy handprints Ryann left on the living room wall while trying to walk...but who wants to cover those up anyways?
Your child can recover from accidently rolling off the changing table...and into the floor.
Um...er, no (cough) case study, but I have a "friend" that this happened to. Side note-when you freak out while checking and consoling your child, don't step on the Desitin tube that you dropped in your panic. Desitin will not come out of the carpet.
Make friends with and treat your child's doctor(s) well. Then they won't laugh at you when you ask stupid questions. See below.
If your child drinks enough purple KoolAid, they will poop green. Chemical reaction.
Politely listen to all well meaning "advice" given to you from friends, family, and strangers-then promptly forget it all.
Having a special needs child teaches you love, unconditional love, on a whole new level.
Always trust your mommy instinct.
Fisher Price Little People can go through the washer and dryer. Barbies cannot. Ryann's skipper has "third degree burns" on her body and is currently being treated by Ken the plastic surgeon.
Don't feel guilty if you are a working mom. Don't feel ashamed or less important if you are a stay at home mommy.
"Mom" can be said in 19,673 different ways and inflections. I know this because I counted once instead of answering Ryann after the first "mom."
There is no better feeling than grubby hands wrapped around your neck, a child snuggled in the crook of your arm, a wet sticky kiss, a tiny hand gripping your finger.
Take time for date nights with your spouse. And if you have girls, encourage your husband to take your daughters out separately for "date night with daddy."
Children will tell everything they know...but in their version, which is usually worse than the truth.
Answer your child honestly when they ask questions, just use language that's on their level. They are, after all, little people.
If you take time to stop and really listen, you can mend a child's heart and hurt feelings.
Kids will say something very loud and embarassing during quiet, public moments.
Case study #81 Ryann standing on the church pew during invitation and declaring, "Momma, these panties are giving me a 'edgie." Rylee yawning very loudly during a lull in her grampy's sermon.
Quiet is not always a good thing.
Walmart fish will die. Be sure you flush completely, or the fish will come back for a, um, "visit." On a side note, kids don't seem to notice their pet fish...until they are dead.
Case study # 103 Ryann's pet fish - Doe, Ray, and Me. We performed the Huxtable/Cosby episode, memorial service and prayer over the fish.
Live in the moment. Enjoy each second fully.

Ryann and Daddy-"Date Night"

Kathy, Barry, and Jarrod Browning with me and Rylee.

Rylee on her "date" with Jarrod.


One of the kids checking out the decor.

Yes, that's a new toilet!

Let's get the party started!

Catch Up

The movie party went off without a hitch. The kids loved it, and the grown ups got in on the fun too. Although, for the most part, the kids paid more attention to the fog machine than they did to the movie! Rylee was scheduled for her second flu shot, but we put that off until this week. I didn't want her to be sore during the holidays. Thanksgiving came and went. Aaron made his famous deep fried turkey and we had all the fixin's. We invited everyone, but only his parents made it over for dessert. Holidays are always a bit tough since we generally don't take Rylee out as much in the cold weather. Later we all snuggled up in bed together. Nothing like a nap on Thanksgiving day! We woke up to snow flurries Friday. Aaron and Rylee stayed home and watched football together. Every time he yelled at the television she turned her head to find him. By the end of the third overtime (Arkansas v. LSU) she probably had whiplash! Ryann and I went out to see "Enchanted." We both enjoyed it immensely-I've never been in a theatre where people clap during the movie! Then we trotted around Pullman Square and checked out the bookstore. After the girls were warm in bed, I settled in to read a book and wait for Rylee's "last call" (feeding and meds). I heard cars in the driveway and caught our church teenagers making a feeble attempt at rolling our house. They barely made it out of the car when I saw them and waved from the window-at which point they all scrambled harem-scarem, toilet paper rolls in their wake, back into their cars and peeled off.
This week looks like volunteer work at the hospital, mailing out the invitations for Rylee's Rally, and dropping off some clothing to a baby living at the mission. I'm also contemplating painting while Aaron is in DC. Hurts my head already just thinking about it all! We'll see how much I get done...I'm guessing the painting will be at the bottom of the list.

Rylee's Room Makeover

Rylee enjoying her new big girl bed. She looks like that story, "The Princess and the Pea." She loves laying on her side to watch her Oggz. Usually it puts her right to sleep!

Show and Tell

What an eventful day! Ryann's teacher scheduled 'Show and Tell' for today...and told the kiddos to bring in something exciting. So at 1:30 today in we strolled...me, the video camera, the digital camera, the bookbag, wheelchair, and Rylee.

Ryann stood up front-it's difficult to hear the video-and told the kids about Rylee. She told them what she couldn't do but quickly followed up with saying, "but we don't care because we love her just the way she is." The kids enjoyed hearing about how she snorts like a piggy when she's hungry! Ryann told the kids how special her sister is and then informed the students they could ask her momma questions. I joined the girls up front (after wiping away a few proud tears) and answered the questions as simply as I could. A child's ability to adapt and adjust to new things still amazes me. Many times we've found young children ask better questions and are more polite than than the adults.

I took in a book to read about differences, and handed out our NKH fundraiser bracelets. Each bracelet had Rylee's site attached to it. Hopefully the parents will check it out and gain a better understanding of what we go through daily...and they will use this as a way to teach their children about differences. Our theme was 'Everyone is different. Your differences are what make YOU special.'

I'm attaching video from the day and photos of Ryann's class with Rylee. I thought that Conner, Grace, Maggie, and Katie would enjoy hearing the story we read...since their siblings also have NKH. I know I'm not "Reading Rainbow" material, but the kids got a kick out of it!

As always, thanks for checking in-and don't forget you can still leave us comments-we love hearing from each of you!

Welcome!

Welcome all RyleeBug groupies! Due to the demand of her adoring public, we are constantly striving to overachieve in our updating capabilities. I know everyone is used to the caringbridge sites...and we have enjoyed posting there...but her "new and improved" site offers more photo viewing options and video capturing.
We hope that everyone will add this new web address to their "Favorites" tab, and check-in often.
If her fan club continues to grow-we may have to make t-shirts! Any ideas? "Please don't stare, I already get enough therapy." What about, "Not defined by a diagnosis." Yeah-I'll get to work on that one!
Thanks again for sticking with us and always keeping us in your thoughts, hearts, and prayers.Aaron, Deb, Ryann, and RyleeBug