Thank you for the many emails and calls...sorry that I haven't posted. Honestly, I haven't wanted to and really find it hard even now to find the right words to say. From the moment we walked in the door Thursday evening until about lunch on Friday, all I could do was cry, uncontrollably at times. The reality that I brought Ashley home just as sick as when we left after spending a week in the hospital, was more than I could bear.
We did talk a bunch with UVA yesterday, I am grateful for our nurse Shelly. We had a bed all lined up for her to stay for the weekend and start the NG tube, but then I got on the phone with dietician. When I asked the details of what would happen, I got the answer that they would just use Elecare, which we are using at home, in higher doses. We then talked thru a detailed eating plan of what she would need to get in her shake and food wise and are giving it a shot this weekend. We have ordered several different kinds of high power supplement drinks to give her a variety because most of this stuff doesn't taste soo hot (which you can pray that our insurance will help us cover). I know many of you think we're crazy, but we made this decision with UVA's approval. We haven't closed that door by any means. She still has a cold and is blowing her nose and coughing often, which will be even more miserable with the tube. We also weighed the fact that she has been thru much medical trauma and asked not to return to the hospital. I'm not saying this will never be the case, but when Brittany asked us in Sept. not to medicate, thru much prayer we had a peace about honoring her request. AND THE LORD HAS BEEN FAITHFUL! It hasn't been easy, as we are really pressing Ashley's ability to intake at this point, but this hasn't been easy for months.
We have a follow-up appt at CHOP on 3/11 and will be heading back to Philly. She will have some other tests at this point as well. Struggling Celiacs can have weak bones, so one of the things they will do is a bone scan to see how much calcium she might need to supplement. They have other things planned and I am looking forward to learning more. This is a very complex disease.
I have to say a heartfelt thanks to my parents at this point. Like Pam, they went above and beyond. They drove up from Florida and served us in any way that they could. They traveled with us to help get Ashley home and totally hooked us up at Whole Foods before they left. We will miss you and pray for safe travels back to Florida. We love you soo much!
So...pray for increased intake, pray that Ashley will lift her head, open her eyes and talk! While you're at it, you can pray that I can lift my head as well...grateful friends!
Lori
Lori- thanks for doing this Blog...we are reading it and praying multiple times a day. I will be praying specifically for you this week, Friend....for strength for your Mama's heart and for constant wisdom and encouragement. Love, K
ReplyDelete"The power of the gospel can be fully shown only when the Christian is subjected to some fiery trial. if God would make manifest the fact that 'He giveth songs in the night,' he must first make it night." William Taylor
ReplyDeleteI hate that you are going through such a long, dark night. Thru tears, I am praying for your dawn to come quickly, and for strength to keep pressing on.
I love you, Cramers'
wise
Praying for you, Lori, as you are feeling the weight right now. May God give you the strength to face each moment. Last night I was listening to the gospel of Luke, chapter 8. Stories of Jesus healing many. The one that stood out to me the most was the one about Jairus' daughter. Jesus said to Jairus, "Don't be afraid; just believe, and she will be healed." Praying now for Ashley's healing...for the cold to go away...for nutrients to be absorbed in her body...for her to have the desire to eat again. Praying for the doctors, dietician and all involved in her care. Praying for your husband & children. Lifting you all up this morning before the almighty throne of our Lord.
ReplyDeleteshared your story with liz last night - she and chris are praying too.
ReplyDeletein praying for ashley yesterday - I just had such a sweet picture of Jesus literally with his hands on her stomach - cleaning it - cleansing it -
i love you guys. praying - keep us updated.
We were so glad to get your post this morning. We have checked it each day and appreciate being in touch.
ReplyDeleteOur thoughts and prayers are with all of you as you try this plan of supplements. Hopefully Ashley will get enough nourishment to give her hope of being well again.
All of the folks here at MBG have you and your family on their prayer lists and we hope that all of the prayers will give all of you the strength that you need.
GOD DOES WORK MIRACLES AND ASHLEY IS DUE FOR ONE
With love,
Ginni and Bill and the MBG group
Dear Lori,
ReplyDeleteWhat an unbelievable battle. I am continuing to pray for you and your swet Ashley!!! My heart is aching with you and my prayers go out for you!! God is faithful! I love you dear friend!!
Love,
nancy gillespie
Thank you for sharing the Casting Crowns song. Here's a link to the song that has spoken so deeply to ME on behalf of friends who are hurting — "You Are Good" - Nichole Nordeman with Erin O'Donnell:
ReplyDeletehttp://www.youtube.com/watch?v=rCSIGY8-Hs8
"When it's dark and it's cold and I can't feel my soul, You are so good. When the world is gone gray and the rain's here to stay, you are still good. So with every breath I take in, I'll tell you I'm grateful again. And the storm may swell, even then it is well. And you are good. . . . It's more than enough to know I am loved and you're good."
You and your family are in many prayers — so good to see you at church yesterday, Mike,
Diane