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.
10 comments:
Thanks for taking the time to update Rylee's stay in the hospital and the awesomeness of God in your family's life. I am blessed to know you even if it is thru this web page. I know I am a better person for knowing you and your family and have learned ways to better minister to a family in need. Praying for your trip home tomorrow and a speedy recovery. You are in my prayers.
Hi Dear Davis clan we love you all and are Praying for all of you here in Fl. and our Church Family here.Paul and Mary Lewis.xoxoxo
Davis Family,
We love you and support you in everything you do for both girls as it is always done with much prayer, in love, and in the best interest of both of your wonderful, unique children. Keep on keepin' on just like you are. Once again, we love and support YOU!!! As always you remain in our daily thoughts and prayers.
The Davidsons
May HE Bless you Deb and Aaron for all the caring, love, and understanding you've shown Rylee (not everybody could do what you've done the past 3.5 years) and thank you for just being our friend, we are blessed. Love you guys.You're in my prayers, all the time
G. Sandy Jones
HI. I'm Olivia's cousin from Alabama and often read about you on her page. I will be adding your blog to my list of blogs to check regularly. It's good to hear that Rylee is doing better and will hopefully get to come home soon. It takes special people to care for a child with special needs. I can tell you are a very special person and I'm sure both your girls know that you do everything in their best interest.
Misty Hubbard
First of all, I am so thankful and happy that Rylee continues to get better & home is in your near future. What a difference a week makes. I pray you get to come home today & that rest will soon follow. Nothing like getting home after a hospital stay. I bet Ryann will be glad to have you all back where you belong! Secondly, Deb, I commend you on your gracious response to "anonymous". I was angry & hurt (for you all) by what was posted and wanted so badly to respond but I knew that it would be handled so much more elegantly by you, which of course it was. Those of us that know & love you all, know that you post the pictures & updates to give praise to God for all he continues to do for your family. They also give us guidance in how to daily pray -whether it be a praise or a day that we have a specific request. I guess instead of being angry, I should have looked at the comment as you did (with a loving heart) & pray that this person never be put in the situation your family has. No one knows what they would do unless as you put it - they were knee deep in it. I believe that God gives special needs children to couples that he knows will care for them as they need to be cared for - you & Aaron prove this time & time again. Rylee & Ryann are blessed little girls to be in your care. So, I am glad to know you & call you FRIEND & I continue to support you in my prayers & any other way that you need me today & everyday. I love you all.
Not ashamed to sign my name, Trish
Hey Davis Clan!
We're thrilled to hear that our Ryleebug is on the mend! We appreciate you keeping the website updated during Rylee's hospital stay - it has to be easier than all of us "Ryleebug groupies" ringing your phones off the hook! I'm sorry that you've had to deal with some negativity regarding Rylee's website and criticizing your parenting decisions. Let me remind you that Rylee is your gift from God - no matter how long He lets you have her, it's not ours to decide when He takes her home. Don't think for a second that anyone who truly knows your family thinks anything negative about you. Rylee has exceptional care - because you make sure of it! She's our angel and we love her. She has been given a direct assignment from Him, a purpose to fulfill while we have her. She reminds me daily that life is precious and that encouragement and strength in my life can be drawn from an amazing 3 year old little girl and the incredible family that loves her. Can't wait to see you! God Bless! Love and prayers,
Jessica
It was a pleasure to take care of Rylee the past couple of days.I am glad to see her getting better.Life is a story told by God and I'm proud for your family to be part of mine.I truely wish for the best and even though she can't tell you how she feels I know Rylee is happy to have you both as parents.Take in every minute and enjoy the time God has given.BUT REMEMBER TO GET SLEEP!!!Keep me updated. Tim Jobe Respiratory Care kentuckywildcatzz@hotmail.com
Hi! My name is Shari. I stumbled across your blog and have been reading. Wow! What a miracle both of your beautiful girls are! I am so sorry you have had to endure the cruel comments of others. I have another "bloggie" friend with a critically ill child who has experienced the same thing. I am so thankful for your response to them. I will keep Rylee in my daily prayers as well as the rest of your family.
Blessings,
Shari
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