Yesterday, the orthopedist pulled strings to get us in to see the pediatric rhuematologist today.
Today started out normal. We all got up and had breakfast. Natalie and I made bunny hand prints. William took a nap and we decorated the windows for Easter and watched the beginning of WALL-E. We rushed out to the library for storytime, where they both managed to not cry during the stories, then they played for a bit before we met some friends at the park.
The park was a mistake. Natalie didn't have a good time. While all the other kids are playing, her stiffness is preventing her from walking up stairs and down, running, and climbing off and on equipment. I have to hold her hand sometimes and the other kids try to encourage and help her and are confused when Natalie gets upset with them. Add to that, there are three dogs and even though only the two small ones go near her, she shrieks in fears. William tries to eat wood chips and Natalie trips over a rock. The only good things are William gets a nice ride on a swing and I get a picture of Natalie and her friend on the seesaw together. This trip to the park highlights all the reasons we need to see the rhuematologist.
Our appointment is at 3, so we leave at 2. But this means waking Natalie up from a dead sleep and putting William back in his car seat 10 minutes after taking him out. He cries most of the car ride. When we arrive, Natalie is in good spirts and we don't wait long before we see the actual doctor.
The doctor asks us a bunch of questions, none of which are surprising. He watches our video of her stiffness in the morning. Then he examines her, which Natalie hates, even though she remains in Mike's lap the whole time.. she says, I don't like it over and over and over crying as he checks her joints.
It turns out far more joints are affected than we thought. Her knees and wrists were most obvious to us. He says her wrists are impressively swallow more than once. Her ankles are also swollen, as our all of her fingers. He asks if she has trouble grasping, which we thought she might, but weren't sure of what was appropriate for her age. She can inflect her wrists, its hard to curl her fingers, and she can't fully straighten or bend her knees. This is all somewhat fulfilling that a doctor is validating that all Natalie's complaints are from this pain and stiffness, though it is sad that she has been suffering for five months..
The doctor says bluntly that she has juvenile rheumatoid arthritis, the type where many joints are affected. The next 30 minutes at least we are bombarded with information as we try to keep both kids happy. If we had not researched JRA ourselves and felt so sure of it, it would have been extremely overwhelming. Instead its just mildly overwhelming. At one point I think I might start crying, but keeping William busy prevents me.
The doctor tells us mostly about the aggressive treatment he wants to take and explains why he wants to do each step.
1. Shots to her joints to relieve the swelling right away. She will need several so she will be put under like I was for my wisdom teeth extraction. This will be done at Barbara Bush Children's Hospital.
2. Start her on a drug called methotrexate which will work over time to end the swelling. Bad news: this drug is most affected when injected so we will need to learn to give the injections. Good news: its only once a week.
3. Physical therapy once the first two treatments have a short time to work.
Before we leave the office, there is still a lot to do. First, we get her hands including her wrists and her knees x-rayed. Natalie doesn't cry but has a hard time keeping her hands still. She is proud of herself after the knee xray, but needs to redo the hands. Mike races her to see who can hold still the longest. Natalie and I manage a nice couple minutes together.
Natalie needs blood drawn, which she does from Mike's lap while I talk
to her. She says her arm is stuck because the nurses are holding it
down. She cheers up right away once the needle is removed and I'm
holding the gauze. She picks a red race car as her prize (even though
Mommy comments on the pretty gem rings!). The blood test will look for
Lyme disease as well as help characterize her arthritis. She holds her car the whole car ride home.
Now its time for me to learn the give the injection. I have wondered if I could do this before in my life, but faced with it its not so bad. I practice on their kit at least ten times before doing it for real on Natalie's leg. While I practice, Natalie and Mike play with her new car and William bawls, and is passed off to a nurse who walks him around the office. When its time to do the shot, I forget to do a 45 degree angel, but otherwise do alright. Natalie does not like it, but we are prescribed a numbing cream to help in the future. We are also prescribed the little vial of medicine and syringes. They give us a red box for the needles. I never even considered how people who do home injections depose of needles, but apparently, they buy the red boxes and bring them to the pharmacy, as we will now do.
After one more prick to check for TB as a routine safeguard for the medicine, we are able to pack up and go. Natalie has three band-aids, two stickers, and her race car. William is a wreck - tired and hungry, but too wound up to eat or sleep and he cries the whole car ride home.
We both call our moms to share the news. My mom talks about how she dealt with my asthma and medicines and such and she (and my dad from the background) say I can manage this. Mike's mom gets very sad about it, especially since she can't be here. She feels horrible that Natalie has been suffering and worries that her mom's arthritis is to blame. Mike tells her that my grandma had it, too, but it was too far removed to be much of a factor. Hearing his mom upset gets Mike upset. Natalie says from the back seat "oh, guys don't be sad. Its okay. Its just wind." It is overwhelming adorable that she is so sweet about us being sad when it is over her discomfort, yet she is oblivious about the reason we are sad.
I put William to bed immediately once we get home and he is very happy. Natalie doesn't want dinner or bath. I worry about her stomach since this sounds like a couple nights ago. She tells us "I not throwing up" a few times during stories and says "I be happy" when we ask if her tummy hurts. I am not surprised when she throws up in bed about 15 minutes later. Again there are obvious chunks of food, but it is more like regular vomit. We strip her bed and pjs and give her a bath. After another book, she is back in bed. Its been over three hours and she hasn't gotten sick again. We are both a wreck about if she needs to see the pediatrician about this, and I worry its something we should have mentioned to the rhuematologist. We figure if she makes it the night, we will bringing it up on Thursday when we go to have her TB test checked.