Wednesday, August 12, 2015

The Past Year In Pictures


Chad and I are both in school and it doesn't leave us much time to post updates. But here are some pictures that sum up the past year for us.


 Della wanted to be Deedee from Dexter's Lab, a cartoon that went off the air a decade ago. So we improvised with a homemade version and Chad Photoshopped the label. Della was delighted.



Archer was in the Spelling Bee and he will never spell "recluse" wrong ever again.


Della turned 8...

And she was very happy with her roller skates that she can't really use...

Archer turned it up to 11...


We went out on a date...


Chad did an amazing job painting our chairs...



Archer filmed himself eating a jalapeño and it went very badly...




 We went to California and spent time with cousins...


Our neighborhood flooded during the craziest rainstorm we've ever seen...

Chad met Santa at the post office...


 Archer helped out with the Boy Scout Food drive...

Della also (kinda) helped too...


We went to the rodeo and the boys were clearly terrified by the haunted house...


I received a scholarship and got a giant check. I got to meet the president of my school, Dr. Khator.
Then Della immediately peed her pants and we had to leave the ceremony early.

Our plum tree produced 41 pounds of fruit...


Chad and Archer have been honing their sushi skillz...

Della has gotten good at stuffing herself into really small spaces...


Caitlin somehow passed Anatomy...

Archer graduated from elementary school and he's pretty stoked to move on to middle school. He was one of only 8 who made it into the middle school's drum corps...


Archer volunteered as jr. staff at Cub Scout day camp at the beginning of the summer. I constantly had adult leaders coming to tell me how he was the best volunteer in the entire camp...



Caitlin also volunteered. It was her first year...and probably her last...

We painted our room navy and Chad hardwired and installed some rad lights...



 Caitlin was interviewed by Houston NPR about her two hour commute to school and how the new light rail system downtown will save her time. Our family went down on opening day to ride the new train. It was pretty much the highlight of Della's life...




We renewed our membership to the Houston Museum of Natural Science...

Della was really excited that she got 10% off her purchase of this spinning light toy at the museum gift shop. I think all the patrons were really happy about her using it in the specially lit mineral/rock exhibit...



And that's about it. Stay tuned...maybe I will post again in another year...




Friday, July 17, 2015

Della's Special Needs Spotlight at Little Miss Miggy


Head over to Little Miss Miggy to read our interview about Della. We are obnoxiously long winded but it's so easy to talk about our favorite girl! We are thankful for this opportunity and we hope that other families can learn from our experiences and our mistakes.  We also hope to spread the word about ASXL3 and Bainbridge-Ropers Syndrome.

Tuesday, March 04, 2014

I Love Someone Who Is Rare

February 28th was Rare Disease Day. The Global Genes Project states that Rare and genetic diseases affect 1 in 10 Americans, 30 million people in the United States, and 300 million people globally. Over 7,000 distinct rare diseases exist and approximately 80 percent are caused by faulty genes. The National Institutes of Health estimates that 50% of people affected by rare diseases are children, making rare diseases one of the most deadly and debilitating for children worldwide. http://globalgenes.org/

Tuesday, February 18, 2014

Sissy Is 7




 For Della's birthday we took her to Target and let her pick out her gifts. It took at least 30 minutes as she indecisively vacillated between 3 toys. Chad caved and bought her two toys (Dora and Lalaloopsy Baby). Afterward we took her to Baskin-Robbins where she could enjoy her favorite dessert, mint-chip ice cream. 



And let's not forget this handsome boy (who needs a haircut)...


Thursday, February 13, 2014

Merry Christmas Darling...Happy New Year Too

Are you singing The Carpenter's song now? OK, good. You may continue on...

This year Archer emailed us his wish list complete with direct links to each item. The majority of things Archer wanted weren't wrap-able. In fact, they weren't even tangible. He did get 3 new pairs of socks (not on his list) which will make an appearance later on in this post. Besides the socks, he ended up with some After Effects Plugins, a few tutorials, and a how-to video for a super cool magic trick. Chad wrote down each gift on a note card and put them in envelopes under the tree. Archer was pretty stoked...



Sis got some Monster's University toys...


She was also pretty stoked...


The past three years we have gone to the Houston Museum of Natural Science on Christmas Day. We really like doing this because the museum is practically empty and we have free reign over the exhibits. Unfortunately the museum was closed on Christmas and even more unfortunate, we didn't know that it was closed until we pulled up to the parking lot. But being the resourceful parents that we are, we quickly thought of something else to do before our kids (Della) freaked out. We decided to walk around Hermann Park which has extensive grounds (140ish acres) and is located right in the middle of the city. Here you can see Sam Houston astride his noble steed...



The first thing Archer did at the park was lose his aforementioned socks...

We spent most of our time in the Japanese Garden where I snapped a picture of a bee on a camellia (one of my favorite flowers)...

 Della was obsessed with the koi pond and somehow she just knew that Japanese koi love to eat pine needles. She spent most of her time helpfully pointing out the fish and throwing fistfuls of pine needles into the water. The park rangers were thrilled...


Della also made many attempts to swim with the koi but Dad put a stop to that...




We were disappointed that the museum was closed, but we had a nice Christmas spending time together with as a family...


Houston Museum of Natural Science: Take 2

We were able to go to the museum on New Year's Day. My favorite exhibit was the treasures of Russia's Czars; specifically the works of Fabergé. The kids thought it was "meh." Chad took this beautiful shot of a gold and diamond egg...




We saw an authentic T-Rex skeleton...


Della was less than impressed with the petrified wood display...


But the boys liked it...


Archer and a Cro-Magnon...


And with an impressive sarcophagus...


All Della wanted to do was see the butterflies.


The first video is of Della catching a butterfly mid-flight and then immediately ripping it's wings off...

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And the second video is of Della not sharing her pumpkin pie shake with anyone...


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