Friday, July 6, 2012

What does this illness look like? (Pictures & Videos!)

**Please read archived posts for a history of how this began...

Happy almost Saturday everyone! (Only one more hour 'til midnight.)

I am ready for the weekend, that's for sure.  It's been a long week, and I have a burning desire to just be with my children.  During the day at work when I check in with Kylee, (our nanny), I wait anxiously for her responses to my text messages asking how Lucianna is doing after getting her meds and breakfast.  The past few days, her responses have been, "she's requesting to be carried a lot" or "she's sitting more than normal" or the text I received Tuesday said, "she hasn't walked at all today", {it was 11am}.  The past two days she has seemed the most active between 5pm-7pm but still struggles during the day with comfortable mobility. She has had three not-so-good days in a row this week...I really hope tomorrow is makes up for all those and is a great day!

If you have read my summary of JRA at the bottom of this blog page, you can certainly get an idea of what a child experiences with this disease.  Though we aren't sure exactly if Lucianna has this disease or not, we do know she is experiencing all the common symptoms of JRA and want to share with you all how it has affected her thus far.  Please understand when reading on --the illness affects kids differently, many children are way worse than she is and some are better, (but that's usually due to remission). 

This is how this illness, (whatever it is), is affecting her.

Her knees are swollen and remain swollen all the time.  (Her ankle and hip are also affected but much less severe.) We didn't know the ankle and hip had issues until she was examined at Johns Hopkins.



Her posture:  She walks with her back slightly hunched and her legs bent and her butt sticking out. It reminds me of Shirley Booth in the old "Hazel" TV shows, (ouch, showing my age).  Tonight she was unable to put enough weight on one leg to step up onto a stool to brush her teeth...I had to put her on the stool myself.  

This is a video taken two weekends ago that shows her posture.  At the end of the video, you can see that she is reluctant to sit down.

  video

Below is a video taken just the other day that illustrates how she sits down and stands up. (She basically tries not to bend her legs.)  Keep in mind, this was one of her "better days" so she is able to do this...most days she prefers to be on a chair or sitting on the couch, rather than the floor because it is hard for her to get up and down off the floor.

video

Another example:
video



The below photo illustrates her everyday posture - she is not a fan of mommy taking pictures - hence the covering of her face! 


She still plays and has fun, albeit - on the couch:



Below is a photo Daddy took of her on the way home from the pediatric ophthalmologist appointment to have her eyes checked.  The eye complications related to JRA are incredibly serious.  Basically the inflammation can settle in the eye and without symptoms or warning, can cause damage, vision loss or blindness if left untreated.  Some children who have the eye disease, have to use steroid eye drops that, if used too long can cause cataracts or glaucoma.   Yes, you read that right.  If this doesn't make sense you.........you are right, it doesn't make sense! I don't understand how they haven't created a better medicine yet.  If she is diagnosed with JRA, she will need eye check ups every 3-4 months to make sure her eyes are okay.  For this appointment, her eyes showed no signs of inflammation currently or in the past,  thank goodness...clearly, she was very tired!


Below is her at her visit to see Dr. Sills on June 28th, a pediatric rheumatologist, at Johns Hopkins Hospital).  

She sure can make illness look so beautiful......


No words can truly describe how it feels as a parent to watch their child in pain and the helplessness that I feel to remove this from her body.  Children should be children...running, playing, hopping, moving without the need for help and definitely without pain/discomfort. When I was kid/teen/adult and was sick, it was always so apparent that my mom would have gladly traded places with me because as a mom, she hated seeing me suffer.  I finally know how that feels.  I would give anything to take this terrible illness from her so that she is well again...anything.

Thank you all for reading; it's so therapeutic for me to share.  It would mean a lot to me if you would sign up to receive email updates when I post, so that I know you are all informed of her progress...or check the blog a couple times a week. :) 

Love,
Lucianna's proud Mama.

2 comments:

  1. thanks for posting the videos and pictures. it was very heartbreaking to watch :'( I am sorry she had a rough 3 days despite the dosage increase. :-(

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  2. Nicole, Lucianna is such a beautiful little girl, I hope she is having a good day today while you can be home from work to spend time with her, Bella n Matt. Much love n continued prayers - Kim

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