It's been about two weeks since posting last and we have had a few extra trips in between our regular clinic visits. About a week and a half ago Evelyn woke up with a weird rash on her inner thighs and a few spots elsewhere. Any type of rash needs to be addressed right away so I called clinic and we were told to come in. They had a suspicion it was chicken pox but it was hard to tell over the phone. It gave us a good scare because it can be very dangerous for Evelyn to get them. After a few hours at clinic they reassured us it wasn't chicken pox and may have just been a reaction to something. By the next morning it had disappeared!
In isolation at clinic because the rash could have been contagious -
We had our weekly clinic visits on Thursdays with the usual blood work and chemo then this past Monday Evelyn had a bone density test - she will get these every 6 months. This test will assess the strength of her bones since chemo can affect them. It was a quick test but Evelyn did so well - climbed right up on the table and laid still the whole time. She was such a good girl she got to push the buttons on the machine and left with a bunch of stickers and a freezie in hand. We were so proud of her. It's in these little moments where she doesn't put up a fight and treats it like no big deal that we realize how courageous our little girl is - God has truly blessed us with an amazing daughter. Even though our hearts are heavy at times and we wish we could take her place she reminds us that she's got it handled :)
And yesterday we had to head to clinic to get Evelyn's NG tube put back in - it was pulled out again climbing into her car seat.
Evelyn just finished another steroid round this past week. We are adding more food that she likes when she is on steroids, this week it was soup, saltines and the usual meat -
Steroids also make Evelyn an early riser and random napper -
Always being silly -
Lindsey and Steve
Colossians 2:6-7 "So then, just as you received Christ Jesus as Lord continue to live your lives in him, rooted and built up in him, strengthened in the faith as you were taught, and overflowing with thankfulness."
I can't get over her smile. She is just gorgeous! She is also such a fighter what a gift from God, He always knows what to give and when! What a beautiful testimony she and your family is to those around you. Always praying for you all.
ReplyDeleteWhat a trooper! I always think of her when I see children like her at Give Kids the World Village here in Florida. The daughter of one of our park friends returned to GKTW this past week to find her "star". She was there with a life threatening condition when she was 5. She is now a beautiful, healthy 23 year-old young lady. I pray that this is the road for Evelyn.
ReplyDeleteWe always pinned our sons NG tube at the back of his shirt so it wouldn't hang lose and get caught on things. Usually we had a pin around his shoulder to pull it back away from his face and then a second pin kelts it in place further down his shirt keeping it from swinging forward and getting tugged on if he was crawling, rolling or something. We also found these pins meant that usually if the NG tube got tugged it tugged at the shirt before it tugged out of the nose.
ReplyDeleteUnfortunately she hates it pinned to her shirt and prefers it dangling in front of her - not sure why! Haha.. She usually gets mad and pulls on the pin, ruining her clothes in the process. We manage to convince her sometimes though - thanks for the advice Steph! :)
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