Let’s see, Monday morning, Phoebe was fussy when she woke up, but today (Tuesday) she was not. I am having much better luck giving her the naproxen, as yesterday I went back to CVS and they added flavor to it. I picked watermelon over grape (thinking it would taste better with juice, if I still needed to dilute it), but they said that “mango” is the recommended flavor to pair with the medication, and if I will be needing it often, they will make sure to get it in stock for us.
I have also now had a conversation with Cordelia about what is going on with Phoebe. I told her that she knows how Phoebe has been having an owie in her leg and that it is making it hard for her to walk. And she knows that Phoebe had an x-ray (she was with me for it) and that there were no broken bones. And that last week, she had more pictures of her knee taken with a machine that looks at your muscles and tissues, instead of bones. (I didn’t tell her about the anesthesia process). I said that the pictures showed that Phoebe has a disease in her knee and in her joints, the parts of her body that help her move and bend. It is called arthritis, and it was going to be our job to be big helpers and make sure we take the best care of Phoebe and make sure she gets all the medicine and treatments she needs to get better, so her leg won’t be ouchie any more. As we talked, Cordelia was very interested and asked some questions: “Why does her knee hurt?” and “Why can’t she bend her knee?” She also made some along the line of, I don’t have arthritis, I’m big/strong. So I thought that was encouraging, because at other times Cordelia has occasionally been doing the classic thing of “oh younger sibling is sick/getting attention, well this is everything wrong with ME, I’m sick too....” Fortunately, my pediatrician said it’s completely normal and was more than happy to examine Cordelia too..... Now that things have gotten more serious, I’ve been taking Phoebe to all her specialist appointments without big sister distractions.
Today, Cordelia stayed with her Meme and Papa, while I took Phoebe to the TB test. Phoebe was uncooperative and did not nap at all before I picked her up! Great timing, kid! She fell asleep in the car for the less than 10 mins it took to drive there, and then, of course, had to get woken back up. She was ok in the waiting room, but started to cry as soon as she saw the nurse, Nancy. Poor little thing, this is just the start of all the shots and things she will have to have! I kissed away all her tears.
I put Phoebe in the umbrella stroller to take her to and from the car.... when I sat her down, she never even bent her left knee, just held it straight out. Usually, if I have put her in her powerwheels car or her push trike, if I put my hand behind her knee, I can help her bend it. This time she wouldn’t. She also cried a little about being put in her car seat... I don’t think it felt good. So rigid today! :(
Then we drove to Palo Alto to get checked into our hotel. I was lucky, it was still in the mid-afternoon and the rush hour build up was going the opposite direction. Phoebe had a hard time sleeping during the drive, oooh tired girl!
We got there and one of the hotel staff passed by while we were at the front desk. When he came back, he gave me a big pack of organic gummy bears for Phoebe, if I wanted. I thought that was so sweet!
Phoebe cried when we went in the hotel room, she got scared it was another doctor’s office and didn’t want to go on the bed! Ohhh boy, she is already so aware. Tomorrow is not going to be fun at all. Phoebe was so calm for the MRI, but I don’t know if we will get that lucky again.
I put on some Sesame Street and we explored the room, and she started to have more fun. We went down in the lobby where they had pizza and veggies and other snacks. Phoebe ate popcorn and donut holes for dinner. Ok and she tried jicama and later had a pouch of pears/spinach. She would not eat her blue berries, her banana (that she asked for, but then refused!), or a cutie, or cheerios.
I had a ticket for a complimentary glass of wine, which with all that’s going on, you bet I got one. Here it is with cheerios that I picked up after they were spilled on the floor. #momlife
I am slightly less impressed with this hospital than the W.C. facility in terms of preparation. Last Friday, I was called by the rheumatologist’s Palo Alto office and she said that there was an opening Wednesday at 9 and that Dr. B would even be there to do the procedure herself. I asked the address of the hospital and the girl on the phone said she didn’t actually know it, but that someone else would call me.
On Saturday, I got an online notification about the appointment for the 21st, and it had an address but it said someone else would contact me to give me an exact time. I already had a time, 9 am, but that was not included! (Side note, also so scary to read, the Upcoming Appointment description says Surgery!)
As of Tuesday, at like 4:40, no one, automated or otherwise, had called me to make any appointment confirmations or go over the anesthesia process. For the MRI, I had several phone calls and a very detailed, and very reassuring conversation with the nurse. Like, don’t feed her after midnight, and no liquids after 6:30, and when you come in, follow the purple sign to where you need to go.... very reassuring! I figured I did have enough info to probably find my way, but still would like more details about like what floor to go to and stuff, so I called Dr. B’s office. But their voicemail said they stopped taking calls at 4:30.
At like 5:15 someone from the hospital finally called me! It felt so last minute, after 5pm! Here I was already in town for this appointment, and I was honestly starting to have worries like there was going to be some sort of mix up in dates between the rheumatologist and the hospital. Fortunately, we already have the MRI under our belts, so none of it was a surprise, but now I at least know where to check in, and that they want us there as early as 7:30, which was totally new information. Why couldn’t they have called earlier?!
Jason finally made it in at like 7:30, and we did bedtime. He also called Cordelia to tell her a "light's out story".
I hope our girl sleeps well and that the ordeal tomorrow will help make her worlds better in the long run! Hopefully writing all this will get it out of my system, so I can get some sleep too!
No arthritis in her hips! She loves to kick her kicky feet!
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