I love cold, fall mornings. I love sleeping with the windows open and waking up to a chilly house. I love how the brisk, morning air fills my lungs as I wait outside with my children for their busses to arrive.
My daughter, however, does not.
She's not a big fan of the cold mornings when her joints are flaring. Yes, she is flaring again. As many of you know, cold mornings are always challenging for very stiff, very swollen joints. It takes her a while to get out of bed because she knows the first morning steps are always painful ones. She has a difficult time walking back and forth to the bathroom, and standing at the sink to brush her teeth is no easy task. Most of the time, she has to sit down.
As we go about our morning routine, I silently pray for my sweet girly. I pray that today will be better than yesterday. We've been down this road enough times to know what to do first - pray and
give it to God. And, then we do what we know to do for her physically - heat up the rice sock, warm baths, massage therapy, stay on top of meds (Indocin - 9mls per day), and alert her teacher and the school nurse.
About a month-and-a-half ago, her PT noticed her big toe on her right foot (the first joint that flared when she was 15-months-old) and the outside of her right ankle were very swollen. I got her in to see her rheumatologist immediately. He confirmed what the PT suspected - she is flaring again.
(big toe on right foot)
(rear view of swollen right ankle)
(side view of right ankle)
(front view of right ankle)
The rheumatologist recommended she have another drain and injection done because she has responded so well to them in the past. With that said, this Thursday Mia will be going back to Tufts for another joint drain and steroid injection. This will be her
fifth time having this done, making this joint drain
#5 &
#6 for her. She will be sedated for the procedure, as she is not a big fan of watching the needle go in the extract the fluid (what kid would be?? I'd want to be sedated, too!)
For those of you who are new to Mia's journey to complete and total health, here are the other drain and injection procedures she's had done to date:
#1- left knee (3.5 years)
#2 - right elbow (3.5 years)
#3 - left knee (6.5 years)
#4 - right knee (6.5 years)
#5 - right ankle (6.5 years)
#6 - big toe on right foot (6.5 years)
She won't be going through the pediatric rheumatologist this time, though, as they don't drain and inject smaller joints like ankles and toes. They referred us to a hand and foot orthopaedist at Tufts and it has taken a MONTH-AND-A-HALF to get the appointment (Grrr!). I was hoping to get this taken care of before school started last month and dance started this month, but this new doctor is always "out of the office" and the only other doctor who does this procedure is "out on medical leave." (*sigh*)
So, third week in September it is, and we're happy it is finally here!
To ease her pain in the meantime, Mia had custom-made orthotics created for both of her feet, not only to provide her with more support and comfort to her joints, but because she has "collapsed arches." This issue is causing her ankles to cave inward, putting even more strain and pressure on her knees. Once she got the orthotics made, she said her feet have felt much better. We've had a bit of a challenge trying to find sneakers that will accommodate them - Keens and Sauconys seem to work, but they can't be laces because she can't get her foot in (and we can't get the orthotic in!).
This school year, Mia not only has a new teacher and all new friends in her class, but she has a new school nurse. And, since school has started, she hasn't wanted anyone to know that she is in pain. So, she does not tell anyone....ALL DAY LONG! We've had numerous talks in the last three weeks about how it is okay to let her teacher know she is hurting. However, she still won't tell anyone. She doesn't want to miss out on what her class is doing and she doesn't want other "new friends" to know she is "different." I finally had to call the school nurse last week and give her a "heads up." She was so great! She talked to Mia's teacher and explained the problem. She even schedule times during the day when Mia would be "taking a bathroom break," but really going down to see the nurse to ice her ankle so her friends would not know. We are blessed to be working with another great nurse this year!
In regards to dance, she expressed a deep desire to do tap this year. She didn't do tap last year because it was too hard on her joints, and we wanted to see how well she could handle ballet and jazz. While she did such a great job during recital time last year, it was very hard for her to sit in the audience and watch her class perform their tap routine during recital last year. She wanted to be up there with them. And then, all summer long we heard, 'I REALLY want to do tap next year! Pleeeeeeeaaaase!" So, we had to ask ourselves, "Do we withhold her dreams from her because we are afraid she might flare?" No, that would be "living in fear," and teaching her to say "I can't...," something we definitely did not want her to learn.
So, we are going for it! When we went to purchase her tap shoes, we got the kindest saleslady (whose daughter also has arthritis). She gave Mia little pads to put in the toes of her tap shoes to give her extra cushioning - great idea! And, I called her dance school and worked out a Plan B, in the event that she did flare before recital next year. But, we have faith she will not and she will be able to perform with her class next spring. We are standing behind her dreams!!
Thank you, friends, for always standing with us, for praying for our children, and for the extra hugs and much-needed laughs on the hards days. God is good and our future is bright!
"They have no struggles; their bodies are healthy and strong." (Psalm 73:4, NIV).
