Super Bowl Sunday

Super Bowl 2007

Super Bowl 2008...pre-game grins.

We are thankful to bring January to an end and are looking forward to a healthy, drama free February. Rylee is recovering slowly but steadily. We went out to eat with good friends last Sunday night. While sitting there he and his wife mentioned the fact that just two weeks ago we were praying Rylee would make it through the night. Amazing that she has come so far, in such a short period of time. She has begun to act more like herself-grousing while I do her therapies, grinning at her daddy's voice, looking for Ryann and turning her head...and filling up dirty diapers! Yikes. (grimace) Aaron and I laugh when we realize that our main topic of conversation centers on the girls...I can remember vaguely when we discussed politics, economics, travel...sigh. Now we go out to eat on our "date nights" watchful of the clock, hardly daring to be gone more than an hour-we just can't seem to wait to be home with our girlies. Topics of discussion now? Rylee's bowel movements (alluring dinner conversation!), what crazy thing Ryann told one of us, and did we remember to lay out Rylee's Distat before leaving.
We've discovered more "tricks" while staying in PICU...When your child fills a diaper with a substance the same viscocity as the Valdez oil spill...you need to worry. Always take great care of and show gratitude to your nurses-they are the ones that hold everything (including the parents!) together. Try to be patient with the residents...they are learning too...then you can laugh about it later. There's a reason they call it "practicing medicine." Cafeteria food actually tastes good after four days of living on Coke and McGriddles from McDonalds. There's nothing like your own bed. Ten hospital pillows, when positioned correctly, can give ergonomic support viable for sleeping on the hospital pull out sleeper chair. Can't replace the support and encouragement of good friends and family. Your medical staff knows if you snore or drool in your sleep...and yes, it is possible to, like cows, sleep upright. A pediatric intensive care room has fifty whole ceiling tiles, sixteen half tiles. They make a suction catheter tip with a toothbrush-it freshens, cleans, and sucks drool! The emergency helicopter landings and take-offs are quite precarious to watch. Shasta colas kind of taste like real sodas...well, sort of.
While I'm discussing the hospital stay. Our NKH friends' kids all seem to have sympathy pains with one another. Please pray for Rylee's little girlfriends, Fiona and EllieKate. Ellie Kate is home now, but teaching her mom and dad that it's entirely too easy to pull out an NG tube. Please pray while they learn the "ropes" and that Ellie Kate will soon be back to eating by mouth. Fiona is still in the hospital with what started out as the flu. Tests are still being run, they've ruled out pneumonia and RSV already. She still runs a fever off and on. Pray the doctors will have wisdom, and that she recovers quickly. Also-while these hospitalizations are difficult on our NKH children and us parents, don't forget about the siblings. While they enjoy being spoiled by grandparents and friends, they miss their schedule, time with their sister, and the attention of their parents. Remember to pray for Conner (Ellie Kate's brother), and Maggie and Katie (Fiona's big sisters).
On a side note - our sweet friends the Laneros have begun a foundation in honor of their little "BabyCakes" Charles-Alexandre. The foundation helps raise awareness and financial support for NKH research, and will provide services to families caring for children with life threatening illnesses. The link can be found on the left side of Rylee's page. I hope you will visit and learn more about this wonderful organization-The Charles-Alexandre Lanero Foundation. Be sure to also check out all the photos of this handsome little boy. Sonia and Marc and Aaron and I have decided that Charles-Alexandre and Kaymaen are probably "shacked up" together in Heaven. You know how girls fall for an accent! (grin)
While I'm sorry about how we've meet all these exceptional families, we are so thankful for their knowledge, encouragement, and support.
I'm beginning a more active pursuit of designing special needs products. And while overwhelming, it's exciting to see things come together-knowing that Rylee is making a difference. Please pray that I can find appropriate funding sources, and that the people we deal with have Rylee's best interest at heart.
Aaron and I are scheduling our Disney trip. Everytime I pull up the website and hear that music, I tear up. I can't believe we've been granted another opportunity to make such special memories with our girls. Ryann can't wait to visit Give Kids the World again too. If anyone has any advice about Orlando hotels/resorts, be sure to let us know.
That's all for now. Hope everyone enjoys the Super Bowl photo. It's been a tradition that Daddy and his girls watch it every year. When a team scores, Ryann yells, "Flip Down" (translation-touch down) then stands on her head. We've still not figured out why she does this, but it began when she was one...and it's too cute for us to correct her! Rylee generally sleeps through the whole thing when Chad Pennington (Jets) isn't involved! laugh

Ryann's "flip down"

Fighting over the Doritos!

Rylee finally feel asleep right before the game-we didn't have the heart to wake her.

Thanks for checking in on us. It's still very humbling to know people care and take time out of their own hectic schedules to see what we are up to.

All's Well

All's well on the homefront. Still very tired, but Rylee is almost back to herself. No news is usually good news. I will try to post a longer note this weekend with photos. Thanks for being patient and for all the phone calls, visits, and prayers!

Safe at Home

Sorry we haven't updated sooner, but we've been catching up on our sleep. We brought Rylee home Monday evening. Ryann was so happy to have sissy home. When we put her into her own bed, she sighed and stretched out. Nurse Darlena was here four nights, allowing us to get some much needed rest, knowing how well she would be looked after. We'd gotten used to the alarms and beeps, the interruptions for vital checks or blood work. Here, that first night, the quiet seemed loud. Tuesday we kept Ryann out of school, content to be home...together. Aaron headed back to work Wednesday, but checked in a few times throughout his busy day. Nurse Becky came by Thursday to do a quick once over, make sure Rylee sounded good. Then Miss Judy, Rylee's PICU nurse, stopped by today to visit. It was fun to see her outside the hospital and we enjoyed getting to know her better. Judy has taken care of Rylee from the beginning, so she really is part of our family. Aaron and I are so thankful for Rylee's medical team. There is no way we could care for her the way we have, without their support, encouragement, and guidance.
Rylee's stomach is recovering, and while she's sleeping more than usual-it's a deep, restful, quiet sleep. Almost all of her congestion is gone and she is tolerating her feedings. She had her first "normal" bowel movement Tuesday-showing us the medicine is working, keeping her comfortable while her tummy heals. I've never been more grateful to change a dirty diaper! I even called Aaron to brag on her! Later Aaron teased me for calling it "glorious!"
She still needs prayer as she recovers, but overall she is doing well considering how sick she was. Again, we are thankful for everyone who lovingly treats her, and cannot brag enough on her PICU staff of specialists and nurses.
Once again God reminded us of our complete lack of control...and His total abundance of competence.
Please continue to pray for Rylee's total healing and comfort. Pray that Aaron and I will continue to have a "steadfast heart" as David voiced in Psalms.
Thank you for your encouragement and prayers.

Family Update

Rylee is comfortably sleeping and snoring loudly. Her doctor just came in and told us he thought we may be able to go home tomorrow. It has been a very long week to say the least. Decisions for Rylee are always hard. She has always been a DNR (do not resuscitate) and our main goal has not been to prolong her life, but to make her as comfortable as possible while she is here. This week while we've been here we've kept her DNR status, and have reaffirmed the appropriateness of this choice. Keeping her comfortable has been our main goal this week, and to do that the physicians have treated her with antibiotics and just hoped for the best. We are very grateful for medical staff, friends, and family who support our desire to live and enjoy our daughter-for whatever time we have with her. The PICU staff was overwhelmed to see how big she is, and amazed that we haven't been hospitalized for two years. Considering the seriousness of Rylee's disorder, we've been blessed that her overall health has maintained-and we've been able to love and enjoy her.

To the anonymous person who left opinion notes on Rylee's message board...thank you. Thank you for being concerned about our daughter, and reminding us that everyone has opinions. We've learned that there are no black and white answers when it comes to special needs children. Often when you are knee deep in the situation it is difficult to not make emotion based decisions. Thankfully we have wonderful medical staff who help us maintain an equilibrium.
Since you speak so passionately I assume you have actually been through this yourself and can also relate to our desire to love and care for our girls. This webpage is not to "exploit" our family or our child, but rather to let everyone who knows and loves her stay up to date. Thankfully most people don't know what it is like to raise a chronically ill child-I always appreciate dialogue, even if it is hurtful, that brings up more discussion. Hopefully in learning about our child and our family, medical staff can better care for other families like our own, and strangers will learn to be more compassionate.

For all of our friends, family, medical staff and the strangers who care and pray for Miss Rylee-thank you. Please pray for her continued health and as always, her comfort.

Hospital Update

******Addendum, Friday night - We are still at the hospital. As we were leaving Rylee had another black bowel movement. After Dr. Poulton looked at it he became concerned, saying it was digested blood. She has internal bleeding, hopefully only from an ulcer due to the stress of this past week. Her hemoglobin count was much lower. They will do CBCs through the night to watch it, and if necessary do a transfusion. We are also adding an antacid to hopefully coat her tummy and stop the bleeding, if it is indeed an ulcer. Please pray this is what is wrong and that her stomach lining will heal quickly. I will try to update tomorrow. **********************

Rylee's PICU doctor-Dr. Poulton-just came in to say we are headed home! Once all the blood work/cultures and nasal swabs came back we discovered she had RSV, causing the pneumonia...and the jury is still out on how exactly she got staph. He's going to start her on Bactrium, which she can take through her g-tube, meaning we'll have no IVs to deal with at home. She's off blow by oxygen and doing fine. Her secretions are still pretty thick, but we can deal with that at home by suctioning when needed and giving additional water between feedings.
Right now we are waiting for one result to come back and then we'll head home. Our Nurse Becky stopped in just as Dr. Poulton stopped by, so she's aware of everything and will be able to help us keep an eye on things next week. She's a great source of information...and gives me a safety net. I'm always quick to say I'm "Rylee trained" not medically trained. Having such great medical staff takes some of the pressure off mommy. I did ask if there was anything we could have done-caught it earlier, prevented it-and Dr. Poulton teased me about calling CPS because I was such a horrible mom! It's just that time of the year, and our little dare devil really has been riding the edge for two years. While we fully understand the severity of her NKH and its symptoms, it's easy to have a false sense of security when she's been well. Dr. Poulton was pleased that she responded quickly to the meds, but she certainly was a sick little kiddo. Needless to say I'll be on house arrest for the rest of the winter with RyleeBug. We've had many of our same nurses-they've done a bang up job of caring for Rylee...and keeping me occupied so I won't get too hyper! Nurse Judy treats her like her own. Nurse Amy brought us a home cooked meal one night. Nurse Brooke made sure we had supplies before we came home. Nurse Anita and Tammy made sure she looked pretty. And Kimmy reminds me to laugh-making sure I had at least two tray at each meal to pick and choose food from.
It's amusing that I can talk with, calmly listen to, and help families in crisis situations...but then it's my child lying there in the bed. Certainly a reminder that I've still got alot to learn..and to not take things for granted.
Aaron has been off all week, helping me with the girls. I'm very grateful for a supportive husband. When I can't make decisions, he stands in the gap-and vice versa. It's reassuring to know there's someone standing beside me, willing and able to help me with Rylee and Ryann. The grandma's have been helping out with Ryann, and one of us goes home each evening to spend the night with her. She told me today that when we all got home, she plans to "lock the door and throw away the key" so we won't leave again. Her teachers have been great, helping us keep things "normal" for Ryann. She's such a sweet little kid, and when Rylee's not well it worries her too. Although she has enjoyed "decorating" Rylee's room in honor of her homecoming. I'm pretty sure we should buy stock in Elmer's glue.
Our church family has visited-Pastor Troy brings us breakfast and then comes back to occupy Aaron-and helped out with meals, Cherie stopped to drop of junk food, Granny Franny stopped by to check on her girlie...and above all they've lifted us up in prayer. What a blessing that we don't have "fair weather friends." They've been through everything with us, love us...and always answer the phone. Our NKH families have also prayed and sent emails of encouragement and I think Olivia's mom, Angie and I have spoken almost daily. Thank you-each of you-for caring so much about our little family.
" If one falls down, his friend can help him up. But pity the man who falls and no one to help him up." Eccl 4:10
We're still very tired, and I imagine next week will be long-I'll be watching her like a hawk-but at least we'll be home, in our own beds. Although, I wish we could take our medical staff with us!
Our sense of humor is still intact, and we are reminded again of how fragile life is-enjoy every moment, don't have any regrets. What a gift we have that with Rylee. Aaron and I have learned to love on a whole new level because of our girls.
"...the only thing that counts is faith expressing itself through love" Galatians 5:6

On a side note, in the midst of all this we got some huge news. Many of you know we spent a glorious week (sounds dramatic-but it's true!) at Give Kids the World and visited Disney's Magic Kingdom. Alexis at the VIPLounge and the rest of the Disney cast members were so good to us that I sent an email thanking them. It's refreshing to go somewhere that actually has things for your special needs child. They went above and beyond to make our day extra special-Rylee even got a kiss from her Prince Charming! Certainly a day we will never forget. Apparently the email made it's way through channels and we were nominated for a "Magic Moment." By chance they caught Aaron at home and told him Disney was sending us four, seven day park hopper passes! He teared up, I cried, the nurses on PI cried...what a blessing. A free week at Disney! Can you even imagine! But as parents, we felt like God was saying we'd have another vacation with Rylee. It was such a huge encouragement. By the next day the Disney folks had overnighted a huge box of goodies for the girls and our tickets. It's still a bit overwhelming. We can't wait to get Rylee well and head down there...maybe we can talk Ty Pennington/Home Makeover into making our house accessible for Rylee while we are there!? I know, we'd better not push it!
When we took our Make A Wish trip, the flight was awful and really did a number on Rylee. Because it made her so sick we only got to visit Magic Kingdom and Sea World. Now we can do all the parks, and take our time, ensuring Rylee isn't too overstimulated.
Aaron and I hope that we can go this spring if Rylee is well. It would be awesome to meet the lady Aaron spoke with and thank her and the Disney folks personally. It's encouraging to know there are special people out there that care about kids like Rylee and want to do something about it. "Compassion without action is just an emotion." God certainly has surrounded us with people who show compassion in action.

Thank you for checking on us and praying for Rylee. Sometimes when you are in the situation, that's all you see. But thankfully God sends us the right people at the right time-to care for Rylee and encourage us as parents.
Trusting in His love and grace-
A tired but blessed Davis Family
Aaron, Deb, Ryann, and our little Evil Kanevil - RyleeBug (grin)