January 23

These last couple weeks have been pretty quiet. We've had three clinic visits since last post - things have gone well. The nurses have kept a close eye on Evelyn during treatment to see if they can find a cause for the rash that appeared a few weeks ago. Since then nothing has come up so at this point we aren't too worried about it. Despite Steve, Charlotte and I having colds Evelyn has managed to stay healthy - we are so thankful for that and continue to pray Evelyn stays healthy - she has been doing really well lately.
Last week I was able to talk to our nutritionist about Evelyn's appetite while she is on steroids - lately she's been picking one food (pretzels, chips, anything of the salty variety) and eating only that in excess for about four days straight. She suggested we supplement with Pediasure on those days and not worry too much as long as she is eating healthy the two weeks off steroids. On a regular basis we also meet with the physiotherapist, social worker, occupational therapist, child life worker, and Evelyn receives check-ups every three weeks - there are a lot of people involved in her treatment to make sure things are going well and Evelyn is developing despite her treatment. Today they have increased one of Evelyn's chemo meds so we may notice the side effects increase also - tonight she seems to be doing okay besides a being a little nauseous. This med will keep increasing slowly over the next 20 months. We are back on the steroids today and hibernating for the weekend :).
I thought I would make up for the lack of pictures in the last post and show you what's been going on around here :).

Enjoying their Christmas presents

Clinic days - always fun when Daddy comes

One of our amazing nurses, singing songs to keep Evelyn distracted while she gets her blood pressure taken

The day the rash appeared - it was a long morning :)  

 

Our wonderful Child Life worker doing crafts with Evelyn

Evelyn threw up her tube so she was Tubey-free for a whole week!

 

 

The couple days in January when it wasn't freezing cold we got out with the girls 

 

 

Evelyn got a new baby doll for Christmas so we did a quick NG tube procedure on her

 

 

Hanging out at Nana and Papa's last steroid round, it had its ups and downs

 

 

 

Steroids were a little rough last time

 

 

But in between we are blessed with a funny, energetic, full of life little girl whose smile lights up our hearts every day

 

 

Evelyn's hair is growing pretty fast :) :)

 

 

Lindsey and Stephen

Ps 86:5 “For you, O Lord, are good and forgiving, abounding in steadfast love to all who call upon you.”