Saturday, August 18, 2012

"I ask not for a lighter burden, but for broader shoulders."

Aug 4th - Family Reunion - The only thing she likes more than jelly beans, is cotton candy!

Hello everyone,

It's been a while since I've given you a status on Princess Jelly Bean.  As you saw in my previous post, this illness is a roller coaster ride.  One day we think she's starting to really respond to the Naproxen and is getting better...two days later, she barely walks.  As of late, her complaint is still of knee pain and more recently hand/wrist pain with the left hand.  The hand/wrist issues are very problematic since washing her hands, holding her hand, even bumping it, causes her to yell out that you are hurting her.  I have mistakenly done this plenty of times.

I have to admit, I'm weary about the change coming this week.  Both girls start school on Wednesday.  While I am happy for this exciting new experience for Lucianna who will be entering "Smart Start", I am fearful that I can't be there to protect her.  Will another child accidentally bump her, or push her down or grab a toy from her sore hand?   These are the concerns I have, but the reality is, they cannot be controlled.  What gives me peace of mind is that Lucianna has an amazing teacher.  She is new to the school and we met her a couple of weeks ago to make sure she understands the full scope of challenges she will have with Lucianna in her class.  We were grateful that she has been not only very receptive to taking her on as a student, but clearly is a caring, warm person who wants to do what she can to help Lucianna have as much normalcy as possible.  Bella will be in kindergarten this year...which is baffling to me.  Why does it have to go by so fast???

At this point, I know a few things for sure - things are "day to day" and sometimes "hour by hour" with Lucianna's health.  When she is feeling better, she becomes little Miss Jokester. She is silly, talkative and definitely shows her humorous side.  This is my indicator on how she is feeling on the inside.    Last Monday, she had a day that was so wonderful.  She did a little dancing in the kitchen and moved about freely without any assistance.  Almost all day she was getting around beautifully...then two days later, it all changed.   We have spent the last several weekends doing "fun stuff" despite her limitations - see pictures below.

Currently, we have blood work to be done and need to find her a physical therapist that can accommodate a 3 year old.  Her next rheumatology appointment is August 30th (Bella's birthday).  

If we have any major changes, good or bad, I will definitely post an update.

Many thanks for all the well wishes.
Lucianna's Proud Mama


Making "low-inflammation" oatmeal cookies with Daddy.

Jumping on a trampoline with Daddy & Bella at the family reunion

The Dizzy Dragon ride (with Grandma) and motorcycle ride at the fair!
At the fair checking out the animals.  (The stroller has become essential when on outings.) 

Sticker art books, compliments of Grandma & Papa (HOURS of FUN!)
My company picnic:  She looks all weird in this photo because I had to hold her hair back for the face painting.  She didn't want it washed off and LOVED IT!

This was their first experience with face-painting.  They were absolutely over the top happy. 

Demonstrating the "leaning back position" of her new umbrella stroller equipped for children up to 50lbs. Love this thing, and it was $60 delivered from Amazon.  (First Years - Elite.)  Not good sunshade or storage, but so easy to push her in!  We plan to send it with her to school.

**We find that if we continue to do things as we did "before her illness", it makes our lives feel less affected by it.  I have to think-outside-the-box at times, and plan as much as I can with regard to bringing a stroller and considering what I can do on my own, but it's important that we don't allow this to control us and to minimize our quality of life.   

She may have JRA...
but it doesn't have her.

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