Saturday, November 28, 2009
Tuesday, November 24, 2009
Of course Train was amazing. They are so great live. Each show was different, and perfect in my eyes.
I also kinda decided I don't really like Uncle Kracker. At all. I affectionately have dubbed him Uncle Clapper...cause they clap...a lot. I'm just not that big of a fan, so no love lost last night when they didn't make it to Dallas.
I missed Kendall. And Justin and Kamden too. But being gone for those three nights was the best thing I could have done.
Big thanks to my incredible sister for a fantastic trip...and two super cute t-shirts! And my husband. Who insisted I go, have fun, not look back, and just enjoy myself. He was right. The house is still standing, Kendall's OK, and he didn't kill my dog.
Friday, November 20, 2009
Anyway, tomorrow we leave for our road(ie)trip! I'm really excited. It will be hard though to leave Justin, the kids, and the dogs behind for a few days of good music, food, and sleep. (actually...it won't be that hard at all...who am I kidding?) I'm extremely ready to get away and this week made it even more needed!
We picked up Kendall's AFO's today. And surprisingly, she didn't mind them one bit. I think they're pretty cute, but given the cost of those darn things, she has a much more expensive shoe collection than Mommy now.
Despite her constant need to be held and danced around during waking hours, Kendall's had a pretty good week. Her seizures have not shown their ugly faces since the last time...I think about 2 weeks ago. So, the diet, g-button, and insulin regimen have been going really well. I pray they continue through the weekend.
Thankfully we got this really cool baby carrier for bigger kids from Holly. Caleigh weighs a little more than Kendall (he!he!) so she no longer uses it. I absolutely love it and wonder why I didn't get one sooner. It has saved my neck and back the past few days. It also helped me realize a new skill Kendall has. She understands cause and effect. This is really the only time other than activating switches I have noticed it. She loves to be flipped upside down and laughs uncontrollably when Justin does it. She figured out if she drops her pacifier, I have to bend over and she gets the same sensation. She must have dropped that darn thing 100 times today. She thinks its great :)
Oh, and I almost forgot. Kamden found out today he got the lead role in the 3rd grade play! Its in December and he gets to stand to the side in front of a microphone the entire time! He's very proud of himself. I'm already stressed about it. If you followed my blog last year, you know the excruciating embarrassment I found in his booger picking/eating. Hopefully this year he will abstain. And not forget his lines!!
So, I'm off to get packing and prepare Kendall's food for the next few days. Wish Justin luck....
Saturday, November 14, 2009
Friday, November 13, 2009
We have a huge week next week with multiple Dr.'s appointments and follow ups. We get her AFO's and should have her new stander very soon.
I've been very busy getting everything with our insurance worked out. I thought transitioning to Justin's insurance would be seamless. Its not! And when you're juggling an Endocrinologist, Ophthalmologist, Neurologist, Epileptologist, Hematologist, Geneticist, Physical Therapist, Speech Therapist, Orthopedist, Occupational Therapist (yeah, I like to write all of them, cause I'm proud I know how to spell each of them...and I'm still working on pronouncing them) and home health agencies, its a slightly difficult transition.
But, I have a very exciting event coming up!
Barring any unforeseen medical issues with Kendall (fingers crossed) My sister and I are going to the Train concerts next weekend. Not one, not two, but three! We're making a road trip to Austin Saturday night, then Houston Sunday night, then back to Dallas Monday night. I guess you could say we're big fans!! :) I'm quite fond of Uncle Kracker too...and he's touring with them.
Jimmy Stafford (pictured above) is probably the nicest guy in the world. My sister and I have met him before in Ft. Worth and in Vegas (back in the day!) Anyway, he told me he's very grateful his daughter is healthy and feels for my family. So, he offered to give Kristin and I tickets to the shows. We already had them, so he's going to leave us after show passes at will call under my name. Yeah, I'm cool like that. And totally excited.
This will be the first time I've left Kendall for a weekend since she's been born. And other than business trips, I haven't really ever been away from Justin for a weekend.
I can't wait for a dark hotel room to sleep in. And I'm very much looking forward to a sister bonding road trip!! I'll be kid free and Austin bound in a week. YAHOO!!
I'll leave you with a little TRAIN for your listening pleasure...
Wednesday, November 11, 2009
I had 12 weeks of unpaid family medical leave to ease me into it. Now, I can say it...I have officially quit my job to stay home and care for Kendall.
It may seem like a no-brainer to most. I mean, I have a very "medically fragile" daughter who needs skilled care 24/7. But for the past 12 weeks, I have run every scenario in my head. But the bottom line is this: Will I ever look back on my life and say..."gosh, I sure wish I hadn't spent that much time with that little girl?" And the answer is clearly no.
So I am a bit saddened leaving my career. I loved my job. I love the people I worked with. I loved having extra money and freedom during the day. I loved using my brain.
But I also know this world of special needs momism will provide me lots of love too. Already, the nurses, Dr.'s, and other friends in the same boat have oddly become my co-workers. And honestly, I have never used my brain so much in a job before.
I feel a weight has been lifted. When I left teaching for a career change, I never looked back and had a great sense of peace. Now, I feel the same peace.
I am grateful I have a husband who is such a great provider (no pressure now honey!) Who also has managed our finances (and mine) such that we are able to live comfortably on one income. We are blessed.
So, I'd better get off the computer now and go eat some bon-bons and watch some soaps or something. That is what stay at home mom's do right?!
TOTALLY KIDDING!!! Please don't leave any hate mail for that. It was a joke. But this is the first time 16 years I haven't had a job.
Monday, November 9, 2009
Sunday, November 8, 2009
Friday, November 6, 2009
Holly is organizing a condolence gift for the family. If you are interested in contributing, please contact her at firstname.lastname@example.org.
I am so thankful to all of you for your ideas and support regarding Kendall's button situation. I wish I could say it's better, but it's actually worse. The granulation that was burned off has grown back with a vengence. It is huge and spreading. I know it will get better, it just looks miserable right now.
You guys gave great suggestions. And actually, we have tried all of them! Holly brought a goodie bag by yesterday with the pink ointment, stomahesive, some fancy pads, and a bunch of ideas....so I feel ready to wage war on this stinking granulation tissue. Thank you Holly.
Kendall was casted for her bilateral AFO's. We should be getting them in 2 weeks. Right around the time her stander should be in. And just in time for our loaner gait trainer from ECI.
Kendall is recovering from the trauma at the hospital. She's smiling more and laughing more each day. Her strength is slowly but surely returning.
Oh, and she had blood in her urine again. She was also running a fever last night and this morning. Please pray this isn't the beginning of yet another issue. Please, please, please!