It's been awhile since I updated our blog... I guess I should go do that. Facebook is SOOO easy to use though, and its really easy for everyone to just glance at our Staus Updates...so I'm sure most of you know what Kayli has been up to. :) I think my last MAJOR update was during school, shortly after Kayli had accompanied Ryan to his Senior prom and they had traveled to Disney with the high school band and where in the middle of CYT's production of Cinderella where Emily was a mouse, Kayli was a townsperson and servant, and Ryan was in the orchestra. Since then, not a whole lot has happened...well okay NOTHING MAJOR OR SCARY has happened. :) We have been busy though. My neice Kinsey came to stay with us for a short time, and Kayli's doctor was not happy and said it was not a good idea since she was enrolled in daycare, and pre-schoolers have LOTS of germs that could be really dangerous for Kayli. So i then flew to California to take her back to stay with my mom and her siblings.
School's out, and she scraped by grade-wise. We were hoping for better, but I guess you can't expect too much out of someone who missed 4 months of her Freshman year to save her life. She was very much looking forward to summer, and spending time with her friends, but seems her friends have all been a little busy and I have gone back to work full-time...which makes for a pretty boring summer for her. She got a job though!! She loves it!! She is a Party Coordinator at Sweet & Sassy, and is pretty excited that she gets paid to put make-up on little girls and sing and dance with them!!! OH and she also started Driver's Ed and got her driving permit a couple of weeks ago- so now she asks to drive ALOT. :) She doesdrive pretty good though for a beginner. She is doing everything she can to be a normal teenager, and being very successful at it :P (stubborness and all). She has a little under a month before summer band practices start...so hopefully she will get a chance to get out and enjoy herself a little more before then.
So the news you have all been looking for- haha I purposely made you read through my dribble :)
At Kayli's last doctor's appointment, her numbers were all perfect and liver function tests are all great. They have cut several of her medications, and she is now down to only 3. They have also reduced her lab draws/bloodwork to every other week instead of weekly... which means less needles and poking!! AND they also moved her followup appointments from once a month to every 3 months!!!!! Her next appointment is in September (unless any of her bloodwork changes). We still hold our breath for a couple of days after she has had labs drawn, but usually by the 3rd day we are relaxed that all is still well.
As of tomorrow- her official 6 month mark, she is officially released for physical activity. Dr Mieles wants her exercising regularly and encouraged her to get back involved with sports and everything. She now has no restrictions (aside from changing the littler box! haha) She said riding her bike is boring and its too easy to just coast and not get the exercise she needs and I know she is not motivated enough to run regularly...so we are compromising and getting her a pair of rollerblades as her "Liver-versary" gift. She actually used to roller blade ALOT, but has been so busy with softball the past few years that she got away from it. We also found out that she can play softball if she ever wants to get back to it, but not sure she could ever compete at the level she was before. I would love to see her start playing again and so would Mark, but we both know its gonna have to be on her terms.
Both her and Dr Mieles were a little sad that it was time to reduce her follow-up appointments, and we found out that normally patients are transferred back to the GI specialist at the 3 month mark...whereas Dr Mieles has held on to Kayli as his patient and will continue to do so, his assistant said he got pretty attached to her. WHO WOULDN'T??? I have never met such a brave young woman. There are still days that I break down and cry on my drive home from work, or I re-tell the story of her plight to my new co-workers, or I am browsing the pictures on my cell phone and come across the pictures of Kayli on life support. I can't believe my little girl has been through what she has been through, and I cant believe what a strong and amazing young woman she has become because of it. She is beautiful, and I can only hope that I am doing everything that I can do to be a good mom to this totally incredible miracle.
Happy 6 months "LIVER-versary" Kayli- I love you and I hope you continue to live your new life to the absolute fullest and don't ever let anyone tell you that you are living it wrong...and don't let ANYONE bring you down. Your happiness is first- remember that, and you can do ANYTHING you put your mind to- you just have to believe in yourself.
