
Hissyfits Photography Blog
Aug
18
2008

Aug
15
2008
A long day that is! WHEW! The kids are both whiny and sick…not fun! And although it is completely NOT their fault and I feel horrible that they feel horrible, it does wear on a mom after a while, ya know? It’s nothing major…just colds or allergies. After I dropped Huntler off at school yesterday Gentry and I ran errands and I noticed that her nose was a tad on the runny side, but not a big deal at all. The moment I walked into Huntler’s classroom I could tell he wasn’t feeling well…his nose was red and I could tell that he had been wiping it. His teacher said he had been “blowing it” all morning! Which really just means it would start to run and he would panic and grab a wad of kleenex like he does around here!! I think he used a half of a roll of toilet paper in a 30 minute time span yesterday! I finally got out a new box of kleenex and told him just one at a time…funny how there is a giant pile of barely used ones on the bathroom counter right now, isn’t it?!!
< div>Ahhh Huntler. I took this one while Chris and his mom were on a ride with Gentry. We were in Toon Town and the loud sounds of this little house were about to send him over the edge!

Aug
13
2008
So here we are in the middle of August and while temperatures are sweltering to say the least, my mind is on fall! I have never liked the summer…and at this point in my life I am quite certain I never will! But fall and winter? Oh how I love those seasons and long for the cool, crisp weather…

Aug
12
2008
Hello Hello Hello! Life continues to move right along out here in the desert! The weekend flew by and here it is Tuesday afternoon already!!

Aug
11
2008
If you have been following along for awhile, you have most definitely heard me talk about my dear friend Lisa and her family. Not too long ago we were neighbors. However, life had other plans for us and we ended up out here in Arizona and her sweet family has also since moved on and started another chapter in their lives. However, the old phrase says, “Distance Makes the Heart Grow Fonder,” and indeed it does! We continue to be great friends and are maybe even closer now than we ever were before. Although we don’t live right down the street these days and the chaos we call life keeps us from chatting every single day as we used to, my heart will forever hold a special place for this darling family.
Now read her story…this is all her mommy’s writing…I took it off of her care page to share with you all.
Little Miss Avery came home from the hospital on Christmas Eve of 2005. I guess we should have known from her incredible birth weight- a whopping 10lb 3oz!!! that this little girl was anything but ordinary. On April 17th of 2005, when Avery was just shy of four months old she had a grand mal (genralized tonic clonic) seizure in my arms. At that moment I knew, I just knew that we were in big trouble. Forty eight miserable hours later we learned that Avery has Tuberous Sclerosis Complex (see www.tsalliance.org). TSC is a genetic disorder that causes tumors to grow in major organs, primarily the brain, heart, kidneys, lungs, and skin. Avery has multiple brain tumors, (also called “tubers” because of their ‘potato shape’), skin, heart, and kidney tumors.
On January 9th of 2007, after battling daily seizures for six months Avery underwent a two stage brain resection surgery to remove two large calcified tumors in her left frontal lobe. Avery suffered life threatening post operative complications, including infection, and a blood clot that traveled to her lungs. Yet Avery defied the odds and came home from Cicinnati Children’s three weeks after the first sugery. She then spent twelve weeks in an intensive rehabilitative therapy program in Kansas City.
Avery experienced almost six months of blissful seizure freedom before they returned in June of ’07. Since then we have worked to gain seizure control with medication. Unfortunately on November the 2nd this year, Avery suffered a status seizure that lasted an hour. At first we didn’t feel that she experienced any lasting effects from this prolonged seizure, but we are now noticing issues with balance, coordination, and the use of her right side. Avery continues to receive speech, physical, and occupational therapies each week. Further brain surgery is never out of the question, but something we are hoping to avoid. Despite the challenges Avery faces on a daily basis, she greets me every morning with a big smile. She is extremely curious, ornery, and loving. She LOVES trains (whoo! whoo!), cows (Mooooo!), and her big sissy, Kaylen (Day! Day!) Avery enjoys reading her books, playing with her toy piano, and chasing Kaylen. As many other families affected by TSC we live by the motto, “Avery may have TSC, but TSC does NOT have Avery!”
Now here is the deal. I need YOUR help to raise money and awareness for this amazing cause! I know you are out there…I have over 16,000 hits now and although I love my blog, they certainly aren’t all from me!! This is your chance to stop lurking and make a difference! So please do just that!! And for the non-lurkers who do leave comments from time to time, we need your help too! The TS Alliance is hosting a walk in September in Kansas City. I have been planning to attend since last year’s walk but since that is now not going to be possible, I am still registering as a walker and trying to earn as much money as I can for this great cause!!
It is REALLY easy! Just follow this link which will take you directly to “My Personal Fundraising” page. Click on “Sponsor Me” and just follow the steps. It appears to be pretty easy to follow but be sure to let me know if you have any questions!! You can also play around on there and visit the “Walkathon’s Team Page” and see the other walkers and sponsors!!
**I posted this last night but I am adding in a tad bit more info!! I didn’t mention above that all donations go to the TS Alliance and are put to use funding research on TS and the ultimate search for a cure. Also, if you do not have a credit card or would prefer to donate an amount NOT listed on the online link, you are more than welcome to send a check to me (made out to the TS Alliance) and it will get to the right place. ALL donations, no matter the amount, are just as important. Just click the “Email Me” link above and I’ll get ya my address!!
Thank you all in advance…your help is appreciated far more than you will ever know!!

Aug
10
2008
Have you ever seen a bathroom you had to PAY to use?!! Seriously?! When we were in Hollywood last weekend we stopped at an Arby’s on Sunset Boulevard for lunch and a bathroom break. I am not so big on bathrooms that are on the outside of gas stations, fast food places, etc…but when you gotta go, you gotta go! So, anyway, we pulled up at Arby’s and I was in shock! Call me a small town girl, but I have never seen such a thing as this!

Aug
9
2008
So I just haven’t had the time to blog since we got home! WOW! Things around here have been crazy busy the last few days! But I have managed to steal away a few moments this morning to edit some pictures and collect my thoughts for this post.

Aug
6
2008
We’re home!! Betcha didn’t even know we were gone, did ya?!! Love the little “postdating” feature on Blogger!! Since I am a bit paranoid and don’t like to share with the masses that we are going out of town and our house will be left unattended, I postdate blog entries and set them to pop up at various times while we are gone…and when those pop up, it is just like me updating each and every day!!

Aug
5
2008
So this week I thought it would be fun to switch things up a bit and give you two bits of random “domestic” advice I have recently heard and thought worth sharing!
Hope you found something in there you can use!! Maybe this is stuff everyone knows already, but it was news to me so I decided to pass it along!

Aug
4
2008
So I did my first swap earlier this summer and although it did not go quite like I had it all planned out in my mind (my swap partner sent my gift really late and was just not quite on top of things!), I think I am ready to give it a whirl again! How could I not?! Just look at how fun this Fall Swap looks!!
