Thursday she was doing poorly, so I checked with Dr. Jenn and she said to contact the orthopedic as well, since they're the experts not her, and to keep everyone on the same page. I talked to Chuck (ok, I was practically crying), our nurse, and he said if she's not really responding to the Motrin, maybe the MRI will show it's not rheumatological, which kind of freaked me the fuck out. I'm still a little unclear on what the line between arthritis and rheumatology is even, but to me that sounded like he was cautioning me about something worse. He had me send my last video, and the orthopedic could review it later that day.
Phoebe had her appointment at 3 and then of course she did not cooperate with anything and was.... HAPPY. 😑 It was the cheerfullest I'd seen her in a while, total opposite of the previous evening. Dr Jen was pleased... she said when she'd seen Phoebe the previous Wednesday, she'd been very worried about her. Phoebe toddled around and even let Dr. Jen move her legs, touch her knee, and test her reflexes. Dr. Jen even thought her knee looked better, which it likely was! She said Phoebe is being a mystery for us! UG, how can this thing seem to come and go, changing daily?! The unpredictability is the hardest, but you can only just take it one day at a time. Dr. Jen said she could wait on getting whatever vaccination she was supposed to get at the 18 month check up.... she said it's just due in the next 6 month window and today was the first day she was eligible, and with everything else going, it was fine to wait. She also said that she was glad it didn't seem to be neurological and that Phoebe seemed to be doing very well cognitively. Clearly she has a good brain in there because of her HUGE HEAD, right, child?? 😆
Phoebe's stats were:
Height: 32.09" (60%)
Weight: 23 lb 10.3 oz (65%)
Head Circumference 19.29" (98%)
Chuck also called me back and said that Dr. H and Dr. A had reviewed the video and still basically thought it was JIA and pointed out that at least she could put weight on her foot.
Over the weekend, Phoebe had a little cold, but they weren't the worst days. I also made huge progress myself by joining a Juvenile Arthritis Facebook Group. I made a post with a video and described what we are going through. I asked for particularly if anyone had experience with their toddler. I got SO MUCH FEEDBACK. People left me all kinds of comments and sent me videos of their toddlers walking. I even got PM'd by 2 moms, including one who I chatted with in real time all the way in England. It felt really good--- like, THIS is the kind of thing the internet is meant for. After seeing the other videos, I really feel like we are on the right track and that Juvenile Arthritis will be the right diagnosis.
I have been giving Phoebe daily baths and ordered an electric blanket from Amazon to try and put on her when she wakes up.
Monday and Tuesday were GREAT DAYS. Phoebe was HAPPY and SMILEY and acting more mobile, much earlier in the day. Monday she was a much stiffer by the evening, after her nap, but Tuesday was such a strong day, she even didn't cry when she woke up, which hadn't happened since the previous Tuesday. She still was not bending her knee, but she was just seeming so much more energetic. It was really exciting. Chuck from the orthopedics called to check in, and I had to say that every day is different!
We got called about setting up the MRI. It will be next Tuesday, the 13th. I don't know what the contracted Blue Shield rate will be, but the cash price is $4000. And then you also have to pay for the anesthesia and the person who reviews the MRI etc.... It sounds like our portion is 20% of whatever the contracted costs are going to be.
And then today is Wednesday and I blew it. In the rush to leave this morning, I thought about giving Phoebe her motrin, but then forgot to actually give it to her. When I picked her up, Meme said, "Guess how much walking she has done today? ZERO." I was shocked, but as we sat there talking about it, I realized what had happened.
Phoebe was in so much discomfort, it was seriously heart breaking. I gave her Motrin as soon as we got home and she tried to stand and walk to me, just a few feet away and she could barely stand and cried and cried. She took a huge afternoon nap and still could not walk when she woke up. At one point she decided to try and crawl, but she was like dragging her leg because she didn't want to put weight on it. It looked like it was still hurting her. It was awful and I didn't let her do it, I just wanted her to rest a bit more. I scooped her up and put her in her high chair and gave her her snack. Then I started getting her and Cordelia ready for bath time, hoping that might help a bit. She finally started to take some steps then. It was just before 6 pm at night. She didn't do more than a few steps before plopping down and then opted to crawl a very tiny little bit for a toy, and that was still hard for her. After the bath and after dinner, she did walk across the kitchen. But at one point, she fell and there was nothing around--- I think it was like her left leg gave out. So she was really struggling, even after getting motrin at 2pm.
I am not sure what to expect tomorrow at all, but she was so bad today, I don't know how quickly she will make it up!
Today I also consulted with the nurse about what the anesthetization process will be like. I also scheduled her follow up visit to discuss the MRI results. I also made Cordelia a dentist appointment, something I have been putting off for too long. Calling and making appointments for things is a *serious* trigger for my anxiety (it doesn't make sense, I just know it about myself) but lucky me, now I get to do it all the time!!!!! (of course, no choice now, just gotta do it!) I also texted with Dr. Jen and she has gotten approval from the orthopedics to be the one who is going to refer me to a rheumatologist, who I can call tomorrow, but I don't know how long it will take to be seen.
Too Sad! Watch at your own risk!
Some of the first steps of the day, at nearly 6pm.
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