Given all Emily is facing, Cancer, blood clot, blocked intestine, Neuropathy, edema, and mood swings from Prednisone, she managed to put in an impressive day. So did Tracy, Haley, and I.
After my daily run to Walgreen's pharmacy, I came home and Tracy and I put Haley down for her nap. While she was napping we gave Emily a shower. I don't want to embarrass Emily, but she hasn't had a bath or shower in over 3 weeks. She really needed it, and her skin was also starting to get really flaky. I cleaned off a plastic lawn chair and we put it in the shower and moved Emily in. We gave her a really nice shower, and rinsed her hair. She didn't want us to scrub her hair because it's really coming out now and she wants it to stay as long as possible. Then Tracy put lotion all over Emily just after the shower. She looked so much better, and she also told us she felt so much better. Her skin feels the way it should and that is so nice. Tracy and I also think she's starting to become less swollen since we are tapering from the Prednisone. After the shower, we dressed Emily. Haley woke up from her nap, and all four of us went outside. It was 80 degrees here today, and just the perfect amount of humidity, it was gorgeous. Emily commented how nice it was outside. She was in Haley's stroller and Haley was walking. One of our neighbors had offered to watch Haley so we stopped by and dropped Haley off. After we got home, Emily and I played to Wii, and Tracy is taking a long afternoon nap.
Obviously from this post you can tell today was a much better day. We have to go to Packard tomorrow, because Emily needs a blood draw to ensure that the blood thinner is at a level that is therapeutic and to check her sodium. Our NP seemed like it would be a big deal with us to come in on the weekend, she said "if you wouldn't mind I would feel a little more comfortable if you could come in on Saturday", it sounded like some parents complain about having to come in on weekends. Tracy and I are the opposite, if they even think they want to see us, we will make it happen.
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9 comments:
We are so happy to hear that today has been a better day. It's been so horrible, we are grateful you all could enjoy the beautiful weather and a nice shower. Little things can bring great joy. We're happy you were able to have some.
Love and continual prayer,
Auntie Diana ~^..^~ and Uncle Marty
After all you've been through, it's nice to see you're having a good day! Let's hope there are more sunny days ahead with leisurely walks outside and rejuvenating naps. Wishing you all the best!
xoxoxoxo (That's a hug and a kiss for each of ya!)
It just had to happen - a good day! And perfect timing. So glad you got Emily all cleaned up and feeling good today.
We're headed to Disneyland next week- is there anything Emily might like?
Jessica, John & gang...
Dear Tracy & Chris -
After being there Wednesday & Thursday and seeing Emily in so much pain and so uncomfortable just being in her skin, it is a relief to see in the blog that she had a better day today and even a shower. I am so happy to learn that the gradual dropping off of Prednisone is having an effect already. The only time I saw Emily look happy the past two days was when she told me it was time to taper off the Prednisone! She is such a brave girl and she will get through this with the help of both her parents and all the wonderful people who are supporting her and the whole family. Emily is strong and brave, but she is in a horrible fight that not many of us could endure. Please tell Emily how proud we are of her, that we miss her already, and will see her when we get back from our trip.
Love, Grannie & Grampa
Hello, Theresa Downey again. Emily's blood clot is so very much like my daughters was. My daugher also developed very noticable veins all over her chest...i know how scary it is. Keep up the good work on those shots...we also gave them for a few months and it was so nice to see those veins slowly disapear. She sounds like such a brave little girl. I am guessing you give the shots in the tummy...lots of brusing there. It takes quite awhile for all the discoloration on the tummy to go away...but it eventually does. How nice that mommy is a nurse. I too used a stroller...even in the hosptial. I am so excited for you guys to be done with the prednisone. Between stoping the prednisone and the doing the Luvenox shots she will start to look a little more like the old Emily. You guys sound like great parents...very aware of any and all symptoms that Emily shows. I am glad to hear she had a better day..all nice and clean...we went many a days with no shower either...that is just the way it has to go. My heart is with you guys.
Theresa
We are glad to see that Emily had a better day and hope that continues throughout the weekend. Emily you are so strong and brave; all of us continue to be amazed by your attitude and spirit. Sending lots of hugs your way. Good luck at Packard today.
keep up the positive spirits and let us know how we can help, as always.
all our love,
the smith's
Dear Pepper Family,
I am so happy to hear that today was a better day for all of you and that Emily had a chance to enjoy the wonderful weather....I am keeping you in my thoughts and prayers and I know that one day we will all look back on the difficult times and feel so proud of what fighters you all have been. I hope you are able to enjoy some more of the sunshine tomorrow.
Gosh, this post could have been written by me. We use the little lawn chair in the shower and a stroller for Mollie.
And we got the same comments about coming into the hospital on the weekends. If there's a chance that being in the hospital will help my child I don't care if it's the weekend, the middle of the night, or Christmas- we'll be there!
-Sarah
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