We are now beginning week 2 of our stay here at Primary's, I think I'm starting to get that glazed over look in my eyes, the "hospital eyes" that I've heard so much about. The latest news is that we will be here at least until Tuesday. Abby's body is not fighting the CMV, so they are going to reduce her immuno-suppression meds to enable her body to fight it. This is scary because that leaves a bigger risk of rejection, which is Abby's biggest fear. She absolutely does not want to have to go back on prednisone again!!! They want to be able to monitor Abby while we're making these changes. Her anti-viral medication is also a 2-week cycle, which means it will end on Tuesday, that's another reason we will just stay here. They will do labs again on Friday or Saturday to check her CMV level and her white blood count, then another echo on Monday to see how her heart is doing. If there are still no changes, we will try something different. So, our earliest departure date is Tuesday.
I do think that yesterday was Abby's best day. They gave her some medication for her nausea, and it seemed to help her want to eat more. Luckily, I think we avoided a feeding tube, but we haven't heard the final word on that yet, we'll know when the doctors come around. I think that she ate and drank enough, now she'll just have to keep it up. She was on a very strict calorie count yesterday, we had to write down everything-it reminded me of when we had to do that last May and I put Britt in charge of that. If I remember right, her list looked something like this: one bite of a grape, 2 cheerios, one spoonful of yogurt, one skittle, etc She was very exact!! We need her around again, we aren't nearly as precise, as you can see from her food list below.
As for what we've been doing, somehow, we are keeping busy! We've loved our visits from our heart friends, it's awesome to meet so many new people! At the bottom of the post, I included pictures of Brock and Abby's planking and owling adventure-yes, we were really bored! We still love to play games, and we spend lots of time just chilling and chatting it up with our favorite nurses. We go on walks every day, up and down the stairs many times to keep us strong, and across the walkway. We go visit the redbox at the University Hospital everyday too, even though we know the movies will still be the same.
Britt and Brock are learning how to live on their own. Thanks to our neighbors that have brought them dinner, I appreciate that a bunch, it makes me feel like I'm not neglecting them quite so much. It's times like these that I wish there were 2 of me, or even 3, then I could be at school too, I feel bad that I've left my classes for so long again, but I know they are in good hands with my substitute and the other teachers. Thanks to everyone at Sunrise Ridge for helping me out again, I know that it's probably getting old. Britt and Brock will both be coming up on Friday and staying with us until Sunday, I can't wait, it will be so nice to have them here, and we can all be toghether for a couple of days!! I keep forgetting it's Easter on Sunday, but we did hear the Easter bunny will be visiting-wow, Abby is looking forward to that :) And one of our favorite techs, Camilla, is planning an Easter egg hunt for us on Thursday too!!! You know, it's the little things that matter!!
We are doing okay, we are hanging in there. This isn't where we want to be right now, but I can understand why they want us here. CMV is a bit like mono, it can take a long time to fight and get rid of, but we are on our way to getting over it. Thanks for your continued thoughts and prayers, they do strengthen us and make things easier.
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I love hoe Abby sleeps with her phone in her hand! |
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I thought that someone stole my idea when I saw this sign, but they didn't!! When I get rich, "My Spa for Hospitals and Healing-SHH" idea can still happen :) It's a traveling spa for people that have to stay in the hospital, haircuts, pedicures and manicures, massages, etc. I could make millions for sure! |
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Who's idea was this?? |
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An "owling" attempt! |
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Double planking by Abby and Brock! |
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Abby wanted me to label this one as "Brock's failed attempt at planking!" |
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Another failed attempt! |
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Now here's what planking should look like!! Nice plank Abbs! |
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Another fail, but gutsy move in the coffee shack! |
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Abby's menu yesterday, good enough for no feeding tube?? I hope so, we're still waiting to hear! |
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Monopoly score, yes, I let her win sometimes :)
Jill-you're famous now too!! |
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I found the snack drawers! I'm probably the only one that's ever raided the fig newton drawer!! I love those things! |
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Abby keeping up with her homework-mean mom!!! |
Woot!! I am famous. I've had my name mentioned in two posts in a row. That's a pretty big deal and definitely solidifies me as part of the family ;) I think you guys needs to get your craft on and make a "no feeding tube sign" (think like a no smoking sign) and hang it on Abby's door. Just a little something to ward off any crazy feeding tube vibes that the docs might give off. I've seen your painting skills. I have high hopes for this sign ;) I want a pic texted to me when the sign is complete. Ready, Go!!!
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