Update on Miss Lori’s daughter Jaedyn …time to exhale

Well, it’s birthday season in my household again. I call it a season because over the course of 34 days I celebrate all three of my children’s birthdays. Yes, my children’s birthdays are exactly 17 days apart each. I’m not kidding. My youngest child decided to come into this World precisely in between her sister and bother. And what a metaphor that has been for her. But that’s another blogpost. No, the task this past  weekend was to celebrate in force my youngest daughter’s 8th birthday. Which as she will tell you isn’t until Monday-just to make sure we didn’t forget to celebrate her then. Actually, Jaedyn has a right to want to celebrate every day, because for the last couple of years her birthday celebrations haven’t been all that celebratory. Illness, schedule, money and more illness have gotten in the way. Two years ago was when Jaedyn first fell ill, her birthday was the worst. She was jaundiced, lethargic, in constant pain and an emotional powder keg as a result of all of the blood draws that she’s so terrified of. Nevertheless, we still tried to put a smile on things. I scheduled a birthday spa outing for her and her sister at Sweet and Sassy. But we had to cancel, because on the day of her birthday and the appointment Jaedyn threw up, twice. Then last year everything seemed to get in the way. We were delayed in planning because we had to wait till we were sure we would have the money for a party. When we finally felt confident about moving forward, we couldn’t establish a day when her friends would be available, because her birthday fell during an early Spring Break. Add to that, with my crazy tour and appearance schedule, there just wasn’t a weekend to be found until July! Poor baby.

But this year… this year is different. As many of you have read previously I have been waiting to exhale with concern about Jaedyn’s health for the last two years. After struggling with a series of doctors who were somewhat tepid in their concern, and seemingly unwilling to take any risks on JC’s behalf, we finally found someone who was really listening to her pain. As a result Jaedyn got the ERCP and Endoscopy that she should have gotten two years earlier when she first fell deeply ill. But more than that, this doctor determined that she might benefit from a sphincterotomy. Even though he didn’t have conclusive test proof specifying what was going wrong inside Jaedyn, he felt strongly that when you added up all of the complaints, the tests from her major episode two years ago, and her ultra sound images, that you came up with a negative score that needed positive and creative intervention. That was just 23 days ago. Since the day of the surgery I have been watching JC like a hawk, trying to interpret her every move, comment, food choice etc. Desperately hoping for  good news but cautious about declaring victory prematurely. The first few days were of concern. She vomited, she writhed with pain, she slept constantly. But all of that was to be expected given the fact that she had just had an abdominal procedure. But then one morning late in the  first weekend following her surgery, I went into her room to wake her up. She turned  her face to me in the bed, smiled and said, “I slept really well Mommy. I don’t have any pain.” I had to choke back tears that were desperate to fall, so as not to alarm her. Instead I just smiled and gave her a hug, telling her how happy I was to hear that. Why didn’t I gush, and jump up and down, and shout in celebration. Well, I have learned not to make a big deal about a good health moment until I am sure it is a part of a pattern. For Jaedyn’s symptoms can change on a dime. The worst part of it all is thinking that she is alright only to find that she is not. So I watched her all day. I watched her appetite grow. I watched her use the bathroom effortlessly. I watched her smile easily. And then one day last week afterschool when I came to pick her up. I found her on the field with her friend. I asked her about her day. She said it was good. She had gym and recess, and was able to play during both without a hint of pain. And to underscore her good feeling, when I told her it was time to go to the car, that little bright eyed girl, the one who I have worried over, struggling to get her relief, challenged me to a race to the car… and won. I have never been so excited to lose in all of my life. At the end of the race I was panting heavily, not from the exertion of the run, but because my body was finally, and truly breathing… exalted breathes of relief.

Jaedyn isn’t 100%. There are still symptoms that raise questions. But the pain…the debilitating pain seems to have left the building. Her body is healing slowly on it’s own. Now it’s her psyche that needs help in repairing. She has to learn to expect to feel good after two years of unintentional training by her body to expect pain. The psychological impact of her ordeal can’t be remedied with medication or surgery. It can, however, be helped with laughter, encouragement, friend filled days and birthday trips to Navy Pier, the Children’s Museum, McDonald’s, the Navy Pier entertainment stage and Build a Bear Workshop. A perfect prescription for healing a little girls’ soul.

Thank you from the bottom of my hear to everyone who has reached out to me during this ordeal. I believe that you have cradled my daughter with your positive energy and thoughts. I am truly grateful.

ML

Miss Lori can be found Musing from her Minivan at MissLori.TV , Wearetherealdeal.com , YoungChicagonista , ChicagoMomsBlog , and ChicagoMoms.com. You can also see her Activating to Be Great at Miss Lori’s CAMPUS on Youtube, Facebook, Twitter and LinkedIn.

 

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