Saturday, November 28, 2009

Family Fun

We have had an excellent Thanksgiving break. It has been nice to be home and have Justin around all week too.




Earlier in the week, Kamden graduated to an advanced blue belt in Karate. He's doing so well, he's decided to sign up for another year. He seems to really enjoy it.



Thursday morning, my friend Jill and I ran the Turkey Trot 10k...which I was not prepared for at all. (hanging out in high heels all weekend may have permanently damaged my feet, so running 6.2 miles wasn't the best idea!) But we had a great time running/talking the entire way, and it made me feel a lot less guilty about all the pie and junk I proceeded to eat.




Then we went to my sister's for a wonderful dinner. Kendall didn't get to enjoy any food :(


Yesterday, Kendall's uncle Josh came to visit. It was great to see him, and Kendall enjoyed being smooched on. I had to post this picture because it is somewhat ridiculous. I tease them all the time about the arsenal the Briggs boys have. I thought it hilarious that Kendall is just in the back chilling while a machine gun (OK, I don't really know what it is, but its scary) is being inspected in front of her. Really. In my house! Remember, I'm a Democrat!! I've come a long way.


Today Kamden and I went to see New Moon. When we came home we were discussing the movie and Kamden made a werewolf sound that had Kendall in stitches. Justin caught it on video:

video

Anyway, I hope you all have had a blessed Thanksgiving. And enjoy the rest of your weekend.










Tuesday, November 24, 2009

Train Concert



We made it home. We're alive. And I recharged my juices.


I couldn't even begin to put into words how important this weekend was to me. Its no secret the past two years have been rough. Very rough. I've gone through my pity parties of leaving my old life behind. I have had to reinvent myself in ways I never thought I could. But at the end of the day... when its all said and done...I'm still me.


Kristin and I had an amazing time. We laughed til our tummies hurt, stood in heels til our feet went numb, sang our voices hoarse, and made enough memories to last a lifetime. Seriously. We met the most amazing people on this trip and had an the very best time. Here's a few snapshots of the weekend:








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

Cause and Effect

I haven't posted all week, because it's been a really crazy week! We had a ton of appointments, and I spent down time either holding Kendall or with a phone attached to my ear sorting out insurance stuff! It didn't leave much time for blogging. I'm behind on every body's posts and don't really know what's going on in the world either. Some days it seems like I can't get outside my little bubble. There just aren't enough hours in the day to return phone calls or e-mails and do homework, pack lunches, make dinner, etc. (sigh...I'm such a frazzled housewife! ha!)

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

I Wonder...

if Kendall is trying to tell us something!!



She actually did this on her own in the middle of a feed. With some kids I'm sure this would get old real quick. With Kendall, it makes me very happy for so many reasons. :)
Hope you all are enjoying your weekend.


Friday, November 13, 2009

TRAIN

We have had a super week. Kendall is back on a schedule. She's sleeping better, eating well, and getting closer to where she was a month ago before our hospital saga. Her g-button looks a ton better....granulation tissue definitely still there...but the irritation around it is better.


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

It's Official

I am officially a stay at home mom.

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

Teeth Grinding


I absolutely positively can NOT take it anymore.


It is REALLY REALLY REALLY wearing on my last nerve. It makes me want to crawl out of my skin. And she's doing it non-stop.


How do you make it stop?!

Sunday, November 8, 2009

Anniversary Dinner



Justin and I will be celebrating 3 years of marital bliss on Wednesday...so he took me out to a beautiful dinner last night. My mom and dad babysat starting at 6. Our plan was to make it home by 9 so we could give Kendall her dinner, meds, blood checks, etc. Then head back out for drinks with some friends. When we got home she was asleep, so we had to hook her up while she was sleeping and give shots in her crib. Her button was a mess again, and she was pretty cranky. We decided to stay home and go to sleep! 10 minutes later she was awake again...so we didn't sleep.




This morning, possibly due to her lack of sleep, she had a pretty forceful cluster of seizures for about an hour. She's sleeping off the medication right now.




It was nice to get out and be among the living. Our restaurant was amazing, the food was great. But of course, Justin and I found ourselves talking about the kids most of the time. Guess that's to be expected!




I've bragged about my amazing husband before, but can I just say I am so blessed. He is my very best friend, and I can't imagine going through all of this with anyone else. He is so patient, level headed, nurturing, and loving. But can always, always, always make me laugh until my tummy hurts. I am grateful for that.




We can have fun laying in bed with Kendall between us in the morning gushing over her precious personality, or laughing at Kamden's latest invention or experiment. I certainly don't need lots of fancy dinners or vacations (thought they are nice once in a while!) As long as we're all together...I'm good.




Kendall's fever has gone, and there isn't anymore blood in her urine. Although the renal ultrasound didn't show any kidney stones a few weeks ago, I do wonder if she hasn't been passing them. She screams and screams and screams for no reason throughout the day if she's not being held, and in the night. It's exhausting. But she's so darn cute...




Friday, November 6, 2009

Thanks.

I want to start off by honoring precious Gavin Owens this evening. I know know a lot of you have followed his family's blog and are feeling the same way I am right now. Deeply saddened. Throughout the day, I have had a constant lump in my throat. Tears have flowed uncontrollably, and though I never met this family in person, I feel I know them and share in their loss. Karen has always offered constant support and encouragement to me. I can't even begin to understand how they are feeling today. So I pray their hearts and souls find peace and comfort during this very difficult time.

Holly is organizing a condolence gift for the family. If you are interested in contributing, please contact her at hollydgray@sbcglobal.net.


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!

Wednesday, November 4, 2009

Not for the squeamish...


If someone had told me this was what a g-button could look like, I would definitely have reconsidered.


Poor baby did develop granulation tissue. Apparently this isn't too common, but I sure do seem to read a lot about it. Of course...uncommon, or rare, are words synonymous with Kendall. Fortunately, it isn't really infected. The green stuff oozing out isn't puss, its mucus. (gag)


They silver nitrated it today and it does look a lot better. The red irritation is pretty annoying though. Throughout the day it looks like a really blistered diaper rash. Again, poor baby.


So, why am I posting this picture? Because, in my twisted, unique brain, I find great comfort in knowing other people have been there. So if you don't think its that bad, let me know. If you think it is, don't. If your child's button looked worse, but now looks better, please share.


But whatever you do, don't ever, ever, ever Google granulation tissue. (or tape worms...but that's a long story)


Tuesday, November 3, 2009

Someday...

Kendall will sleep through the night again.


Her g-button will not be infected.


I'll stop my gag reflex every time I use the decompression tube.


She'll hold her head up strong.


I won't hold my breath while waiting for a blood sugar or ketone result.


She'll get back to liking therapy.


And eating.


She'll drink from a sippy cup and enjoy it.


Justin and I will be able to spend time together alone.


Someday. Not today. But someday.


In the mean time, I will try to focus on the light at the end of this tunnel. There is one right?! I'm extremely claustrophobic....so there better be.


And on a totally random note, here's my son who has grown up these last 18 months way faster than I expected. (I haven't taken near enough pictures of him or his milestones. But I did this morning. He got dressed, ate his breakfast without prompting, and proceeded to brush is teeth...without a fight) I sure do love him a lot!!




Sunday, November 1, 2009

Halloween...and a little rant.

We started the day going to Toys R Us. I hate Toys R Us. Always have. But Aunt Kristin told Kamden he could pick anything he wanted out and she'd buy it for him. (she's brave) Anyway, Kendall and I decided to tag along since we didn't have anything else to do...and it was in the time frame where she wouldn't need to eat, nap, or have medication...(a small window during the day!) Kendall has had a series of terrible nights. Screaming from 1:30 when we wake her to check sugars and ending around 3:30 sometimes 4:00. Anyway, I digress...

So we went along since Kendall enjoys the car and being pushed around places. Kam picked out his toys and it was an enjoyable outing. While they were checking out I came across a pamphlet with Whoopie Goldberg on the cover. I like her, so I opened it to see what it was all about. I noticed every page filled with kids with special needs playing with normal toys, so I looked back to the cover. It was a brochure of toys for the "DIFFERENTLY ABLED" Really?! This really annoyed me. If Toys R Us is going to go there, they should have at least included some different toys like they have in the special needs catalogs at affordable prices. But no, they just came up with some fancy schmancy excerpts about the sensory benefits of regular toys. Ugh. Guess I was a little exhausted from the sleepless nights, but still. I have a suggestion for someone out there....Create cute Halloween costumes for Microcephalic kids. It would make Halloween for the parents of the "DIFFERENTLY ABLED" a little more enjoyable.

Later in the afternoon, Justin came home (he shot a 7 point Buck...in Oklahoma...and was quite proud. His truck is filled with blood and antlers...which made me a little sad) Then we went to a carnival in our town for a little while, then home to trick or treat. Kendall and Justin watched the OU game and Kamden, Grandad and I went trick or treating. I'm sure my blood sugar after trick or treating was about 150.

Here's a few pictures. Hope you all had a fun weekend.