Jaylie seems to be doing worse everyday this week. Today has been the worst she has felt. Her fever is fine, it's only in the 99's but she just doesn't feel good. Her mouth sores are horrible and are all over in her mouth, throat and on the outside of her mouth. The doctors say its hurts like ten times worse than the kind we get in our mouths, and she has them all over hers. So I'm not surprised shes not feeling well and she's whiny. They have some medicine she can swish around that helps to numb them but she hates it and its such a challenge to make her take it. It does help though. She's been hard to get to take any of her meds this week. She has been mean and short with me and all the nurses and doctors. She has thrown a couple fits today too, putting her head under her blanket and crying because she wanted the doctor to go away and not check her. She never throws fits anymore, so it's been a challenging day to say the least. She won't eat or drink anything either. I got her to eat a couple bites of yogurt and a couple bites of cream wheat (more than she has eaten in a while) and she threw it right up. She has been needing zofran for her nausea every morning but didn't complain about it this morning so I figured she was fine. After she puked I asked her about it and she said it was hurting all morning. I've had so many talks with her about telling me her symptoms, and she still doesn't tell me sometimes. I knew for sure we wouldn't be able to go home today (because she had fever yesterday afternoon) but was hoping for tomorrow and that's not looking too good now. Hopefully she will feel better soon so we can go home. Good thing this is the last round of this or I would be having a really hard time right now. It's so hard seeing her like this and seeing her suffer. I hate it more than anything. Knowing this is the last time we have to deal with this low count stuff makes it easier and more ok. We have been soooo blessed that she hasn't had this bad of symptoms till her last round. It's almost all over, couple more weeks. Since we have been here in the hospital we missed our weekly appointment at the clinic. We were sad not to see her nurse, Karen. Jaylie loves her and it's been a while since we have seen her bc she went to part time. I was hoping to get a date for Jaylies next MRI, I want it to be over with so bad. Hopefully next week she will be fine and totally herself. She goes in spurts being nice to me though. At one point today she snuggled with me and gave me lots of loves. I needed it after her being so snappy and mean :)
Anyways, just keep praying for Jaylie. She will get better with time, I really shouldn't complain, it just helps to get it out.
Also, I just found out yesterday that my nephew Briggs, the one with the heart problems, has to get his feeding tube put back in because he is not gaining weight. It will be more challenging now to keep it in now that he's bigger and more mobile. Hopefully he will gain weight and get it out fast. And They won't do surgery until he gains more weight. Prayers for him are appreciated too.
I also just wanted to say how thankful we are for all of you, for joining us on this hard journey, for caring and for praying. It has helped us in so many ways, helped us more than you could ever know. Thank you!
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