Good morning! I thought we'd give you a quick update before Rick has to head in to Burlington with Katie on Friday.
We are riding a roller coaster, but its pace is decreasing, I think. Katie had a quiet day Wednesday, but she did have her first bloody nose. We're Vermonters, it's winter, and we heat the house with a biomass stove; this should not have been a big deal. In this case, however, a bloody nose is a big deal. Thankfully, the remaining platelets did their job, and Katie was comfortable just minutes later. She finally decided to clear all that food out of her system, so diapering was pretty interesting yesterday, but I would guess that she must feel a lot better now.
That is one challenge: Katie is just too inexperienced with the language of pain to communicate what she needs or how she feels. She is learning, however, and we are getting better at guessing what she needs. The VNA nurse, who is terrific, has us training Katie to point to pictures with smiling faces or frowns to indicate just how sick she feels at any one time. She came to draw blood today and Katie was a much better patient. (She wasn't perfect, but her behavior has certainly improved...)
Katie's appetite continues to improve, too. I'm embarrassed to tell you that she was happily eating tacos at 8:30 this morning. She requested chicken soup goop for lunch, and she helped me cook it. For those new to our custom food lingo, chicken soup goop is cut up chicken breast simmered in mushroom soup and served on rice or egg noodles. It is so much fun to have time with her when she feels well enough to play. We watered plants, too. I hope this means that she has adjusted to the steroids and that my strong but polite and cheerful child has returned.
I will ask Rick to post pictures of Katie that I took this morning. She likes her new butterfly hat. It did me a world of good to see her dressed in bright colors. About the most recent picture: Notice that Katie is sleeping on a Dora couch? It was a gift from Jeff and Jean Cota, Katie's day care provider and her husband. One difficult aspect of this for Katie is that she wants to go play at Jeanie's house when she feels well enough. She misses her buddies, especially Camden and Abbie. It's amazing how quickly children become attached to one another and how much they are capable of missing each other when they are separated. Thanks to Jean and Jeff, Katie can now watch Dora while curled up with Dora--paradise. Katie will be happy to return to Jeanie's house next fall!
1 comment:
Hi, Katie Grace and family: My name is Suzanne, I live in Sheffield and am good friends with Gloria and Greg Hennemuth. I wanted to share my experience of the last 10 months with you and also wanted you to stay positive and as upbeat as you can. In late March, I was(at age 66) diagnosed with CML(chronic meloygonic leukemia). It has been a roller coaster , with adjusting medications and learning to live with a life-changing illness. The thing that has kept me going is the love and support of my family and friends. It helps to know that so many people love and care for you and are there to help you through whatever you have to go through.It is even worse with a child. I hope and pray that Katie Grace and you will continue to make progress and I thank the Lord every day for "modern medicine". I will be sending Katie Grace something to snuggle with and know that it is sent with love and caring.I won't pre-wash it because I know you will have to do that before she can have it. I know all about those compromised immune systems.I hope this will give you hope, as after ten months, I am living a pretty normal life(except for those daily naps I seem to have to take!)Life is precious and I have learned to appreciate every day. Love and hugs, Suzanne.
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