Taylor has not thrown up since wed, which is awesome. So I guess that was the end of that bug. Thursday she woke up after an awesome night's sleep hungry and ate a decent breakfast. Then, soon after that she was on the couch all day, really tired and no energy. She took a long morning nap and was a little whiney after and then watched some tv. She kept complaining about her tummy hurting. She took another nap and woke up with the terror nightmare stuff. This one was really bad. It took forever to snap her out of it. It is so hard to watch her like that and also to not to be able to help her much.
Friday she woke up, after another pretty good night sleeping, hungry too! So that is good. But she only ate a little this time. During devo/worship time she danced a little bit. She had a genetics appt today, so it worked out perfect for getting the NG tube put back in. Taylor felt great today. The genetics appt went really well. She was actually scheduled to see the NP today instead of her normal MD, but since all this new stuff is going on, Doc made a trip over from her clinic to see Taylor. The NP was really nice and the Doc was really sweet, checking on how we all were doing. We really like her. There was really nothing much to talk about at this visit thought since we have been going through everything with the tumor and have had many checkups though all that. When they weighed her she was back down to before she gained the weight with the NG tube help. They weighed her without her boots/ She was also an inche shorter? So I am thinking that something is messed up in their calculations from one scale to another. Who knows how much she has really gained or lost. When we were done, we went across the hall (convenient that this doc is on same floor as chemo unit) and waited for the nurse to come get us. It was a bit of a wait (even though I called hours beforehand for them to expect us) but then it didn't take long to ge the tube back in. Again, she hated it of course. They put the tube on the other side this time and it seemed to bother her a bit more than the last one. She kept rubbing it and saying it was hurting. After the first day she stopped rubbing on it so much. Now it is just here and there and no complaining. She ate ok today.
Saturday she woke up after an ok night sleeping. I am wondering if the tube feeding affects her sleep. She wasn't hungry and was not that energetic. She wanted to be with me a lot, so daddy took big bro to baseball practice instead of me. She started feeling more energetic later in the day and played outside for a little bit. She complained about her tummy a lot this day. So, I gave her pain meds and nausea meds to see if either of those would help. She seemed to feel better later, so I guess at least one of them did the trick; not sure which though lol. She ate pretty good part of today. SHe has been scared to go to the bathroom lately. She says it hurts her teetee. Right now I think she is dealing with a small constipation type issue to add to the pain factor down there though.
Sunday she woke up and her tummy was still hurting. She slept ok the night before, no major issues. The time change messed us up a bit and her tummy was hurting so much that we stayed home from church. But the kids and I had a good time watching veggie tales and listening to worship music. Then Taylor stayed sitting with me while I watched our church on tv. I gave her some more meds for her pain. She still doesn't like going potty. I have to keep making her go, but she cries. It is like she isn't potty trained anymore, I am so not wanting to divert to those days, ugh! She finally had some good potty time and she was feeling a little better, not complaining about tummy anymore. She played well today and she ate really good (for Taylor anyway)! She is into sliced cheese and cherries lately.
Today, Monday, is her 6wk follow up MRI. She slept well last night and woke up hungry this morning, although she is not allowed to et today until after the MRI is over :( Of course the one day she can't eat, she wants to. She wants to so bad that she is throwing a fit and crying about it. Poor thing, it really sucks... chemo sucks! Anyway, this morning was crazy. I had to get brother off to school then turn around and come home and get the girls ready because my oldest daughter had an OT appt. All of this in the pouring rain. I didn't even have time to eat breakfast or feed the baby. So, dropped big sis at OT then took the lil girls with me to Starbucks. We ran in and then I realized I forgot the baby bag. So we had to run back out into the rain to get it and go back in. Doing that with a whiney "sick" 4 yr old and an infant carseat and a bad back is no fun. Taylor got some appljuice but then refused to drink it because she was hungry and she wasn't allowed to eat. So she protested and cried almost the whole time we sat there. I bribed her to behave by promising her whatever she wanted to eat and a gift later that day if she could be a big girl and make it through the day. After OT, I had to drop big sis off at a friends house for the day; this was a big help. Then I had a couple of hours at home to get finally get myself ready for the day and relax a bit.
We got to Vandy about 15 min early. I grabbed a subway to eat when I had a chance and then went to check in. They called us back exactly when they said we should be there! Then, they got everything done really fast and had her taken back right on time! So the baby and I went to sit down and eat lunch and that is when I started to update this blog, lol. On hour later, they called to say she was already starting to wake up and to come on back to the room. So I packed everything up and headed down there. She was sleeping when I got there. We were able to rouse her about 15 min later. She woke up and said I want some coffee, LOL! She is too funny! She knew it was now time to eat and drink. So, they gave her some sprite and I gave her some cheetos, then within 30 min of coming out of the MRI, we were out of there! We headed back up to the cafeteria and she got some hot cocoa and a cookie.
She is doing well, still a bit clingy to me all day, but that is expected after an MRI. She ate pretty good at dinner time and now she is chilling before bed. I am guessing we won't hear the results until we go in on Wed. Will update when I can!
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