Other possible titles for this post: Not My Favorite Week, "You're in the Right Place" - Really?, and How to Traumatize a 4-Year Old.
But first, the fun stuff! Maia's birthday party was great. We had a big crowd of family - all the grandparents! - an aunt and cousin, a couple of our best friends, and our neighbors. Sofia led the scavenger hunt for the fairy pieces of clothing, and the little fairy guests were just precious.
We brought the fairy clothes, wings, and hats inside to complete our fairy clothespin dolls, and here is how they turned out...
Then we had cream cheese and jam bagels, strawberries, and of course woodland fairy mushroom cupcakes.
Then came Monday. Luckily Grandma (my mom) had offered to stay and help out with the whole treatment thing and we gladly accepted, not knowing what to expect. I suppose Monday was the hardest. They tried putting the IV in Maia's right arm (she's a leftie) and got it in, but while they were wrapping, taping, etc. it slipped out of the vein. Meanwhile Maia had completely lost it and was trying to crawl up my face to get away from the nurses. So we did it again on the other side. This time, Grandma held her and I put my head against Maia's and sang Twinkle Twinkle Little Star in her ear, over and over, until they were done. I couldn't think of anything else. After that, she was pretty calm. She had expended most of her energy. We held her, watched a video, and finally got to go home.
Thankfully, we managed to keep the IV in and functional for the three days so Tuesday and Wednesday were mainly mellow. At this stage Maia is traumatized by any sort of poke and she needed one more on Wednesday. This will be a weekly shot and they suggested that we give it to her at home. Um, really? Because that wasn't on my list of things to do before I turn 38.
When we first met the rheumatologist a few weeks ago, she spent a lot of time with us, listening to our whole story of how Maia's condition had progressed over the last year, including some of my commentary about all the missteps (in my opinion) by our former doctors. She said to me, "You're in the right place now." At the time it was comforting because I knew that she felt confident that they would be able to help Maia. But this week, I couldn't help but feel like, "What the hell am I doing here?" All the sick kids, all the supporting family, the toy cabinet for the kids when their treatment was done, the nurses coming in to check blood pressure, temperature, etc. - these things were not part of my life. But they are now.
I have a good friend from work who's daughter has an ongoing medical condition that has required similar drugs and various treatments and hospital stays since she was 7 months old. She knew exactly what I meant, which made me feel better. All those people who seem so comfortable there, or seem like they are supposed to be there, feel just like me, they don't feel like they should be there either. And they are going along, just like us, fumbling through, feeling sad and sometimes crappy that their kid has to go through this. I'm sure I'll eventually get over this, and Maia will hopefully get better at all the pokes, but for now we are going to whine and complain about it, just a little.
Here's the little trooper after the first day. Thank goodness for Hello Kitty bandaids.
Sofia invited a few friends over for her Kings and Queens Brunch. The crowns were lovely but I didn't expect the kids to wear them much. One friend wore hers the entire time and she was an adorable queen. The crowns were made using a process similar to that described at Bitterbetty's blog here.
The kids seemed to enjoy the restaurant-like party. I took their drink orders, brought them drinks, took their food orders and helped Chris briefly in the kitchen. Then we played a few rounds of 20 questions while waiting for their food. They were very polite (mostly) and I had fun being their server. Chris did an excellent job preparing the food. We served it all at once and most of the kids cleared their plates - those who didn't had eyes bigger than their stomachs ;)
After the party, she opened some presents. Part of Sofia's gift from us was her own knitting basket with a starter skein of red wool and size 8 needles. We also gave her three horse books. Her face says it all. She was very happy.
We spent the afternoon working on a puzzle and rounded the day off with a movie and bean and cheese burritos for dinner (Sofia's request).
I've heard 7 is about the right time to learn knitting. She has been asking for a couple years for me to teach her but I have held her off. We started a simple garter stitch scarf. I was a little nervous about teaching her to knit because I'm not the most patient teacher and she's not the most patient apprentice. That and I'm left handed and she is not, so I am learning to knit right handed along with her. She seems to be picking it up pretty well.
