Friday, February 17, 2017

Facing Forward: Lauren (A Caretaker's Perspective)

Facing Forward is a series that shares the lives of people living with arthritis and other invisible chronic illnesses. The goal of the series is to see how we are similar and how we are different - and to remind us to keep moving forward because we aren't alone!

Name: Lauren
Child's Name: Oliver, 2.5 years old
Child's Diagnosis: Juvenile Idiopathic Arthritis-Oligoarthritis (both knees and both ankles) 
Age at Diagnosis: 18 months

How are you currently treating your child's condition?
We are currently giving Oliver methotrexate injections once a week. We are on week 11 and hoping they kick in soon. Since he is still uncomfortable most of the time he is also on Naproxen (Aleve) twice per day. When all of that seems not to work we use a tiny dollop of Deep Blue Rub, which seems to help.
What are the biggest challenges you have faced since your child's diagnosis?
We have had a very hard time trying to figure out a good medication regime to help him. We started with just Naproxen and that failed in just a week. We also tried diet changes for a few months with no luck. We then started doing steroid injections, which actually worked for about 4 months until only 5 weeks after the ankle injections he was swollen and painful again. We were terrified to put him on methotrexate, but his rheumatologist reassured us and helped us understand how much it could help. Seeing Oliver not able to walk has been heartbreaking and exhausting. 

What are your favorite tips and tricks for helping your child manage everyday tasks?
Treating Oliver the same as his brother has been vital. When we change things he senses it and becomes agitated. When we start to notice he is uncomfortable (hard to tell since he isn't talking much yet, but he gets fussy) we give him either the next dose of Naproxen, do an Epsom salt bath, or the Deep Blue Rub lotion. Catching pain quickly is important. 

As a caregiver, how do you manage to keep facing forward every day?
Since the day Oliver started limping in January of last year, we have learned quickly that facing forward and continuing to live this life to better him is so important. Our faith in God has sustained us. On Oliver's worst and best days we look to the cross for God's mercies, encouragement, and promises that His plan is good. Our family is tighter knit than we were before the diagnosis and we have learned to appreciate each moment and the small things.

If you could go back to diagnosis day and tell your past self one thing, what would it be?
To breathe. Things are changing a lot but breathing is important. My little man needs a mommy with her head on straight and a brave face. Pray pray pray. 

Do you have a blog you would like to share?
Yes! I update Oliver's blog as much as I can. 

Would you like to be featured on Facing Forward? If so, please send an email to  

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