Hope is back on antibiotics and appears to have another infection, likely in her PICC line once again. We're getting sick of this and ready for the line to be replaced or no longer needed. This has been a week of frustrations and as they rise, we fight harder. This can sometimes be a good thing as we get more aggressive with the doctors to get things done for Hope. It sounds like we'll be having a meeting with GI and Cardiology this week to discuss Hope and what is next for her.
Hope continues to retch and throws up often. She is also having continual diarrhea and we are going through 10 or more sleepers per day and the laundry seems to never end now. Hope is smiling less and clearly not feeling well, the fever is likely to blame. We need our little girl to light up again, it gives us strength when we see her smile.
We continue to push forward with Hope's feeds in order to get her off the liquid nutrients. It's not easy on her, but she's a tough little girl. It's hard to believe she's already 9 months old. Please pray that she will be able to handle getting to her full feeds.
Thank you to everyone that has encouraged us this week. It's been really difficult and we would not be able to carry on without the support of those around us. Today I stood in the hallway of the hospital and hugged another patient's mother. She is all alone, after having a child in the hospital for 18 months and those around her getting tired. We really appreciate everyone that continues to stand with us, we know this journey is long.
:( Oh noooo.. I was hoping no news yesterday was good news... :( So sorry to hear this Amy...I hope the doctors come up with something positive this week and that the smiles return and the fever and infection go away... :( Tammy
ReplyDeletePraying with you all! Never give up! God doesn't! Praising HIM that she is still with you. How awesome for you to hug the Pt's mom, and give her your support! Wow...can't imagine how she feels after 18 months and no one there for her, and her child.
ReplyDeleteSo glad that you are there, and the LORD with His angels is protecting you, and watching over your little HOPE!!!!
What a little trooper! Wow....!!! 9 months old....so hard to believe!
Praying always!!!
Continually praying for you and your family. I wish I lived near by to help you out.
ReplyDeleteYou guys inspire me. I am fighting cancer and each day seems like a struggle. But I read about your beautiful baby and your faith as a family and I am inspired to fight for my life like your little girl is doing. I will continue to pray for Hope and your family.
ReplyDeleteI don't have any words that can help... but I am praying and interceding for you. What a road you are on, and what a road that other mama is on... 18 months... wow. Lord, have mercy on your children. Even when I dont comment, I'm reading everyday and praying. You are all close to my thoughts throughout the day. Pls... if there's any way we can support you more, let us know! - Annie and family in Toronto
ReplyDeleteI have been following your story through a friend's FB page, and just wanted to let you know that I have been praying for you and Hope for months now. I have 2 little boys and can't imagine what you are going through....I sincerely hope that you get your smiles back :)
ReplyDeleteDear Loving, Healing, All-Knowing Heavenly Father
ReplyDeleteThank you for using Amy in another Momma's life. Please replenish her and encourage her. Be the One who puts Your arms around her and Shawn and Sadi AND Hope when not one of us can be right there. Multiply, Lord, her army of nearby supporters. Fill Amy with supernatural strength and wisdom. Give her humour. Father, shake her with a good old fashion laugh-till-you-cry --- can't explain it situation. Give her someone like her Mom who can turn frustration into silliness. Bring to Amy's mind whatever will lighten her heart. Father help her realize there is a future outside of the hospital walls...one that is filled with days of fun with her two wee girls. With an outfit that stays clean and fresh all day. With a little girl who chews and swallows real food and whose body thrives and grows. Give her a vision of Hope with hair in pigtails, little dresses and shiny patent leather shoes. Allow her to think of Hope with a little monkey back-pack on that is filled with her favourite activity books and crayons and a favorite doll. Make Amy's quiet moments full of happiness and hope for their future, and make her sleeping moments full of sweet dreams. God, we can tell her we love her...and we do, but please fill her with the constant confidence of that knowledge and please God...keep us praying. In Jesus' name! Amen.
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