Abby, the amazing

Abby is a wonder, through and through. I know I've said before how strong she is, but oh my goodness, that girl is simply amazing. The one thing we can count in with her is that she is unpredictable.

After all she's been through in the last year and a half, we all expected her to slip quietly and quickly from this world. I have been walking around with an elephant on my chest feeling like I can't breathe, and don't get me wrong, this is still sad, but she is just so Abby that I'm amazed. We are in awe.

She has somehow managed to mix her nights and days up. She's up all night, mostly unhappy because it's not daytime. She is running a fever, which is normal for this process, but she doesn't feel too bad. She also doesn't look bad. Without so much fluid swelling her up, she looks more like herself.

What is really incredible is that she wants to taste things the last few days. She was loving apple juice on the sponge. Then she wanted lemonade. Today, she had all sorts of juices, milk, and loved a grape popsicle.

After all the months of trying, begging, and bribing her to taste anything, I can't believe that now, now, she wants it. She's not getting much, and she can't swallow well, but the fact is she really wants it. At first, I felt awful because I thought she was thirsty, but she doesn't actually want to drink, she just likes the taste of things. It reminds us all so much of Abby before she got sick, that it's a very strange mix of joy and heartbreak. Somewhere in my brain, I can't help but wonder if she could actually turn around.




All the things she wants to try!

The doctor says that her body hasn't been processing fluids well in a long time and it placed a lot of stress on her organs. She is more comfortable without the fluid, and even though it's only temporary, she feels better. She feels like tasting for the first time. How weird is that? Hospice says they have never seen a child like Abby. She really is our Amazing Abby-Grace!

Jeff and I are exhausted with Abby not sleeping, but we can't help but smile at how unbelievably resilient she is.

Emily is on her second antibiotic, and her white count is still rising. She had a chest X-ray this morning. Jeff is back at the doctors with her now. She is still running high fevers. She is also still mad about not being able to go to school. I'm with her there.

I have no idea about how the rest of this week will progress, but for today, I can only be grateful, albeit completely shocked, awed, and surprised by how it's been so far. Things can and likely will change quickly, but I wanted to remember this day.

Abby sticking out her purple Popsicle tongue.

Stretched thin

Abby is hanging in there. She is still herself, although she has very little energy and ran a bit of a fever today. She answers us, which we all love and appreciate. I didn't know what to expect and no two situations are the same, so hospice couldn't tell me what to expect. We all have had time with her throughout the day today. We hold her and talk to her. She likes the little tooth sponge dipped in apple juice. She sucks on it, and it seems to make her happy. She keeps her eyes closed a lot, but she's listening to what's going on around her. I thought she was sleeping on me today when Jeff mentioned putting Emily in the shower, but she quickly opened her eyes and fussed at him. Very Abby. Overall, she seems very peaceful most of the time.

Emily is my biggest problem right now. That is a completely insane statement considering where Abby is. This time with Abby is heartbreaking, and precious, but there isn't much I can do for her other than be sure she has meds and is comfortable. We hold and love on her, I talk to her and pray with her, and then pass her so someone else can have a turn.

Emily on the other hand needs A LOT! She is very upset that she missed her first day of school. She is fussing with me all day long about going to school, but the little stinker is sick. She is running very consistent 102-103 fevers. 2 hours before Motrin is due it's back up every single time. I'm sure she is not on the right antibiotic and under any other circumstance I would have taken her back in. She's trying hard to eat and drink, but she really doesn't feel well.

Tonight for the first time we heard a few coughs and she seemed to be breathing just a little harder. Thankfully I was able to check her O2 sats when the hospice nurse was here for Abby and knew she was hanging out around 94-95, so even though she's breathing slightly more labored,I feel like she's safe for now. We elevated the head of her bed, and continue to treat symptoms.

I would love to say what a wonderful faith lesson I'm learning, but so far, no. I am exhausted in every way possible. Emotionally, physically, and mentally exhausted. Emily being sick now has added another massive layer. I have to try to make plans for this to go lots of different ways. Hopefully a different antibiotic will turn everything around, but who knows? So far, I've been here and able to spend time with Abby, and I just don't want anything to change that. At the same time, I want to be sure Emily is taken care of. I know grandparents or Jeff could step in with either girl, but I definitely don't want to leave Abby, and I to be absolutely need to be sure that Emily is safe right now.

The pediatrician is coming over tomorrow morning, so hopefully she can help us out. Now, I'm going to get some sleep (I hope). Thanks for all the thoughts and prayers. Even with all that's going on, we can feel them!


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Good news

Emily came home at 5am. Her ct showed left lobe pneumonia.

They let her come home, but we just have to watch her very closely. She was also dehydrated, so she got lots of fluids.

Overall, the best news possible for what we were all thinking. Still, weird symptoms for pneumonia. She has not coughed, not even once. No one heard anything in her chest, but that may have been because she was dry.

Who knows? Just so thankful to be home!


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Twins

I'm trying to think of how to title this post. There isn't a single appropriate suggestion running through my head.

I'm in the ER with Emily anticipating a long night.



We visited the pediatrician today where we learned Em does not have strep, mono, infected ears, or congestion in her chest.

He did a blood count and her white count was 16,000. That's really high for her. He wanted me to take her to the ER and find the source of infection. I talked him into giving me an antibiotic and promised to bring her in if she got worse.

Welcome to worse. This afternoon her temperature spiked to almost 104. She's refused to eat for two days, but I thought I was getting enough fluid in her. At bedtime, Jeff and I realized she hadn't pee'd all day. 12 hours no pee= not good. Then she started moaning in pain and said her back hurt. We could barely touch her without her screaming. Her fever is barely staying down on Motrin, so I decided to leave Abby and bring her in.

I'm trying to think of how it feels to be in the ER with Abby at home and I guess just numb. I can't process this. We are running IV fluids, and waiting for CT to rule out appendicitis or other belly ailments.

I would love to sit in a corner and cry for a while, but I won't. I am going to take care of this child, and then head home and take care of the other one. Twins. I think that for today, that says it all.