My Daughter Has What?

When you have children, you don't really expect them to have any major health challenges.  You may expect a cold, a fever, maybe even an ear infection, but nothing beyond that.  My daughter, Savannah, has had your typical cold on numerous occasions, but in January of this year she caught a flu that was worse than I'd hoped.  It took out our whole family for a few weeks as we all got it from each other.  Shortly after the flu, Savannah began to have what we thought were "growing pains."  She would wake up from bed and from her nap limping and saying that her knees hurt.  After resting a bit she would be running around like normal.  My husband and I both had really bad growing pains growing up so it seemed normal to us. 

Her knee pain was on an off over the next couple of months but eventually became more constant.  It was at my sister-in-law's wedding that we began to be more alarmed.  Side note, Katee and Ash's wedding was so beautiful!  All three of us got to be in the wedding and it was such an amazing day getting to celebrate their love and the life they are beginning together in Fiji.  Yes, you read that right, they LIVE in Fiji...so cool.  Anyway, it was at the rehearsal dinner and the wedding that we noticed Savannah was limping.  The day after the wedding we noticed her right ankle was swollen.  This is when our first doctor's appointment took place.  We went in thinking she had an infection that needed to be drained, but the doctor insisted we get lab work done to see if it could be Juvenile Rheumatoid Arthritis, Lupus, or something Malignant.  Needless to say the next couple of days we were a mess as we awaited the results of the test.

After many doctors appointments, lab work, and x-rays, we were told that Savannah has Juvenile Rheumatoid Arthritis.  JRA is an autoimmune disease where your body is attacking your joints.  For Savannah, both her knees and her right ankle were severely inflamed.  She also had inflammation in the back of her eyes.

We have felt very taken care of during this process.  The doctors have been so amazing with Savannah and very accommodating to us. The first few months we had a few doctor's appointments a week, but now we only have a few a month.  We consistently see an ophthalmologist for her uveitis (inflammation in the back of her eyes), and the pediatric rheumatologist.

Savannah has been a warrior princess throughout this whole experience.  Of course the first months were very tough on her.  No two year old wants to go to a doctor as much as she has to and she hates all of the lab work and tests they have to run.  But from the beginning she has been able to accurately communicate what she feels physically.  She lets us know when her knees hurt, when her eyes hurt, when she needs to rest.  She LOVES her pediatric rheumatologists and asks about her constantly.  One of her favorite things is getting to dress up as a princess whenever we visit her office in LA.  For a period of time, we were needing to give Savannah eye drops 4 times a day.  Let me just say that I have the hardest time when I need eye drops, so I hated every second of giving them to her.  But by the third week she would lay back and open her eyes for us like a champ!  She remembers that her "pokes" are on Tuesdays, she swallows all of her pills, and she has quickly adjusted to her new diet (no processed foods).

What has amazed me the most through this whole experience is how well she has been able to communicate her emotions and how well she understands her condition.  She lets us know when she's sad that she is sick and when she is scared of getting "poked."  She prays every night and on our way to the doctor's that God will help her feel better.  She knows exactly what the doctors need to check when we get there.  She knows that her shots help her knees not hurt.  She says she has a superpower to run faster every time she gets one.  I'm constantly blown away by how much two-year-olds are able to understand and communicate what they feel. 

Though things are going better now, this has not been an easy process.  Christian and I have gone through our own ups and downs as we have been processing what having JRA means for Savannah and our family.  We've had to adjust to a new schedule.  We now have more doctors appointments and we have multiple medications we need to give Savannah each week.  We decided to get a giant calendar to put all of her health information on and it has helped us all stay in sync with each other.  Savannah gets a different kind of sticker for each day she completes her meds, for each doctor's appointment she attends, and for each time she gets a poke.  It has become a family event that she really enjoys.

We have had to watch Savannah struggle through things and that has honestly been the hardest part for me.  It was hard saying no to her eating goldfish crackers, lollipops, and cake at birthday parties.  It was hard watching her realize that she is slower at running and can't jump as high as other kids.  It was hard holding her as she would cry in the waiting room at each doctor's appointment not wanting to get a poke.  We have tried some things to make it easier on her.  We went to Build-a-Bear and she made a special fairy bear, we made her a book of her Disneyland trips, and we allow her to bring both of those things as well has her doctor set or a princess dress to each doctor's appointment.  Though those additions have made the trips better, it is still hard hearing her scream and holding her down each time she gets her shots and lab work done.  It is hard hearing her pray to God asking Him to make her better because I never thought she would have to pray that prayer so young.

We have had to process and continually think about what this could mean for her future.  How will it affect her at school, with her friends, on sports teams, how she views herself, etc.  We've also had to work through our own feelings.  Feeling sad that this is happening to her and sad to watch her in pain and sad herself.  Feeling scared of what this means for her future and that it could never go away.  Feeling mad that there is nothing that we can do to cure her. 

We received good news at her last Rheumatology appointment.  Savannah's blood work came back normal.  Her inflammation has greatly reduced and the meds and healthy lifestyle are working.  This doesn't mean she is cured but it does mean that it is getting under control and we are so happy. 

I am so grateful to the doctors who are making the process easier than we expected.  I am grateful for Savannah being a warrior through it all.  I am grateful for Christian's love and support for Savannah and our family.  I am grateful that both Christian and I have the tools and the people around us to help process our feelings and to guide Savannah through hers.  I am grateful to God for being a constant place of comfort, for being in control, and for being the miracle worker that he is. 

Thank you to everyone who has been praying for our little girl, it means more than you know.  To those of you with little ones going through health challenges, thank YOU for loving your child as much as you do; thank YOU for catering your schedule around your child; thank YOU for waking up each morning ready to be your child's advocate, listening ear, and superhero.