Yes, it's been a while since I blogged about Phoebe. I guess that's a good thing, but in other ways, I feel behind. There are two posts I started writing and didn't finish and it's kind of hard to go back to when it no longer feels like a diary entry. So I'll just sum up some of the notes on our arthritis journey in that time.
In October we did a JA Day in Sacramento and went to a pumpkin patch. It was a bit far, but we had fun. Lunch was provided and they gave us wristbands for the whole farm and all the activities except the pony rides. The girls loved it. We met two rheumatologists, one of whom did her residency at Stanford, so she knew Dr. B, of course. It was nice to meet a few other parents and their children, but after the lunch was over, everyone kind of went and did their own pumpkin patch activities, so it wasn't the most social of outings.
I also joined the Pediatric Rheumatologist Care and Outcomes Improvement Network (PR-COIN) for a representative of their parent working group. They have monthly phone conference calls and also a few meetings a year, which you can attend--- with travel funding! The first one is in January, but another teacher had already taken one of the days off and I already miss plenty of work, so I'm not going to go to it. But hopefully I can go to another one, because it would be very interesting and I'd like to meet some of these moms in person.
Thanksgiving marked the "first" of diagnosis anniversaries that are coming up.... it has been one year since Phoebe had the virus and ear infection that really triggered her flare. I am thinking about to do a bigger reflection post on those days as we come up on our first year as a JIA family.
For Giving Tuesday, I did register Team Phoebe Steps for the Sacramento Jingle Bell Run for arthritis. Judy and my aunt gave me a donation, so that was very nice. We did not actually go to the Run--- too busy--- but the Sacramento arthritis folks sent us a box of goodies, tshirts, snacks, medals, and jingle bells after the event. So sweet!
I also had lunch with someone from the arthritis foundation, who was asking if I wanted to apply to go to DC to talk about policy stuff too. But the application deadline was when I was also doing a class presentation and also preparing to help teach a 3 night class on Attachment Theory to our teaching staff.... also while Hanukkah was going on.... yes, definitely overbooked myself for early December!
Cordelia and I had strep. Phoebe was minorly sick with something, and threw up a couple of times, but was immediately fine again and running around after. She also threw up a couple of time later, during vacation, but I think that was from having a lot of icky phlegm.
Phoebe had an infusion on Jason's birthday. Cordelia came with us, which I have mixed feelings about. I think she is already so nervous about pokes and shots, so seeing Phoebe get poked was pretty difficult for her. Jason thinks it will make her more empathetic, whereas, I think 5 is still young to worry about all the medical stuff that is happening to her sister. But well, this affects our whole family. She definitely already is plenty aware of Shot Night.
Anyway, of course, this was the time we had a strange occurrence with Phoebe's IV. 😖
They had to poke her twice to get it in, and when they did, the nurse commented "Great blood return."
But apparently her IV was actually "too good." When they started the drip, her IV tube started filling up with blood. I immediately called the nurse back and she consulted with two others before deciding to just take the tube off and replace it, to not risk a clot. So that was kind of disturbing and not normal, even if a relatively easy problem to fix.
After the infusion, Jason's dad put us up in a hotel in Palo Alto for the night. When we went to stay there, we found we our room had gotten upgraded, so that was really cool. The girls loved the hotel suite-- Cordelia got her own bed and Phoebe had the pull out couch bed. In the morning, we continued down to LA to see my family for a few days. While we were there, we went to Disneyland, just Jason and I and the girls. They loved it! It was fun doing all the kiddie rides and doing some things I'd never even gone on before, like the steamboat. There were still so many things we didn't even get to do with just one day, but I doubt we'll be going back any time soon. Jason and I don't have much vacation overlap and once Phoebe turns 3, it'll just be too insanely expensive.
💸💸💸
Shot nights the last few weeks have been getting rough again, with Phoebe getting much more distressed and protesting. Last night, when Jason started to get ready, she realized what was going on and went in her room and shut the door. When I came in, she immediately wanted to shut the door again-- not wanting to do the shot. Some days she asks if it is a poke day. It is hard to know how much to tell her. Like, she's only two years old, she can't understand a calendar. I don't want her worrying about the shot-three-days-from-now. I'd love to read some more literature on pediatric pain and shot routines, etc, like how do diabetes families handle it multiple times a day?? I'm sure there must be quite a bit of research out there!
On Tuesday, I am very very excited because Phoebe FINALLY has a dermatology appointment. She has been having a rash on her palms and feet since November and I have been going crazy not knowing what it is.
I have recently connected with another JIA mom of a two year old in our area. I am thinking about trying to set up a playdate with her and the other mom I met at the Phoebe's walk, but not sure about what location would be good as we're a bit spread out.
Ok, lots of JIA news, huh? I'm also trying to be a bit more active about posting on the Phoebe Steps Facebook and Twitter pages.... we'll see what 2019 brings. Maybe a JIA conference trip over the summer.
This post could really use some pictures, but oh well, bedtime.
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