Our princess is still hanging in there and doing very well considering she’s not suppose to be with us at all. We are not hearing an irregular heartbeat like we were told she should have. Aside from the occassional low o2 stat and high hr and of coarse the posturing/vomiting she’s doing surprisingly well. The ped called Friday when he got back in town because he hadn’t heard anything from us. He was very surprised that Danielle was doing as well as she is. When I say she’s doing well what I mean is that she’s mostly comfortable and sleeping. That now defines a good day. Needless to say Danielle continues to surprise and make a liar out of everyone. LOL!!!! We are taking the advice of her doctors very seriously but there is a part of me that is laughing at how baffled they are by her and how they don’t understand why she’s still living. Ah, the lesson keep coming!!!!!
She was running a real fever today (102 ax) but since we started her on scheduled tylenol a couple of days ago (for myalgia’s from the posturing) the fever has been masked.
We took advantage of the beautiful weekend we had and spent most of it outside. We brought Danielle outside w/us as we put up x-mas lights. I know a bit early…..but we don’t want to be out there when it’s 20 degrees.
So for now it’s one day at a time and being thankful for every minute I can hold her, kiss her and physically connect with her. We picked out her final resting place this evening, underneath a tree that will hopefully bloom beautifully in the spring.
Well, that’s all for now. Thanks for checking in on Danielle today.
With love,
Megan
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Thinking of you!
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I thin k about all of you every day. Thank you for the update. Hugs and love to all of you..
Cyndy -
Megan, you, Tony, Anthony, and the rest of your family are in our thoughts & prayers daily. I’m so grateful you include me in these updates. You’ve got one little fighter in Danielle, don’t you? Keep us posted as you can, and know that while we’re far away, we love you guys and are holding you in our hearts. Susie
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Megan,
Our hearts, thoughts and prayers are with you all and with Danielle. Only God knows when it’s time to bring His angels home! Enjoy the time you have to be with Danielle physically. The time is blessings from above.Butterfly Hugs,
Teryn -
Megan, I know you are not surprised. She is one tough little cookie. Love her and hold her for how ever long she’s here. She’s still here because of the love and kisses you and Tony give her, My prayers are with all of you and my respect goes beyond words for your courage and strength.
Love and Hugs
Aunt Gloria
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Megan, I am in the car club with Kay/Wayne and have been following Danielle for awhile now. Drs are wonderful but they do not have special insight to time/date and they do not walk on water…until they do…it is a daily process for all of you. I keep you in my prayers regularly and will continue to…God Bless.
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Hi Megan, Danielle and family,
Just wanted to let you know our thoughts, prayers and hearts are with you. I know you don’t know us but I’ve followed Danielle through this page and the MLD discussion list & have always felt Emily and Danielle were so very similar in their experiences with MLD (especially GI issues). I can’t imagine what you all are going through right now, but I am praying for special, beautiful moments for you with Danielle and for comfort and peace for her. I also pray that she continues to wow the doctors and prove them wrong (for, in the end, they are only human and only God knows the number of our days.)Much love to you all,
The Pierce family -
Megan:
We are also friends of Kay and Wayne Carlile. They were very supportive of us and some dear friends at church who’s little boy went through some very rough roads. We KNOW what the power of prayer can do! Please know we are keeping you and and Danielle in our prayers, hearts, and minds. Your attitude is amazing, and that brilliance will see you through and bring you God’s comfort.
Hang tough and know you are loved and thought of! God will continue to hold you in his arms!
Martha Koslowsky -
Dear Megan and Tony,
I know I’ve told you this before, but I wish to tell you again; you are truly an amazing woman and mother. All the research you have put in when doctor’s could not help Danielle or you, all the patient Love you show in all that you do for Danielle, etc. And not to mention the help and research that you’ve provided for the other families with her disease. We pray for Danielle, You, Tony and Anthony. For your strength, peace of mind and wisdom and especially for comfort for Danielle, who continually amazes her doctors. Thank you for keeping us posted on Danielle. We Love You and your Family and will continue to keep you in our prayers.
Love: Aunt Chris and Uncle Rodger
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