Saturday, December 14, 2013

It's Beginning To Look A Lot Like Christmas

Chad continues to send me pictures of the kids with funny captions on the days I'm at school. Here is one of Little Sis...

Archer dropped his glasses down the storm drain. No one is sure how they got down there...

 I was down at Sprinkles Cupcakes and a news reporter stopped and asked if I would answer a couple questions on camera! She asked for my thoughts on stores decorating for Christmas before Thanksgiving and I gave some brilliant answer about how I didn't really care. It aired the next morning around 6:30 AM but I was already on the bus headed for school. Someone in my 8:30 AM class asked me if I had been on the morning news. A few minutes later, someone sent me a text asking me the same thing. That afternoon Chad went to the school for our yearly meeting with Della's "team" and a few of them said they had seen me on the news. Random! Who knew so many people watched the same local news channel? 

 My grandparents came all the way from California to visit us over Thanksgiving. Della was thrilled to have snuggle companions on the couch and Archer was even more thrilled to have a captive audience for his card tricks. We had such a wonderful visit with them and it was hard to say goodbye...

Grandma made a delicious Thanksgiving dinner. She did most of the cooking by herself while I finished two term papers. The turkey was probably the best I've ever had and even Archer ate some of it. He also contributed his hand lettering skills to make place settings for everyone...

We got to see Santa at our church Christmas activity. Archer (who is no longer a believer) immediately tried to amaze Santa with a card trick. But much to his surprise, Santa also dabbles in card tricks. Archer was speechless, which is a rare occurrence...

 Della has made Santa her new boyfriend. He offered her a candy cane and she was smitten...

We volunteered Archer to be a shepherd in the nativity and he was a (reluctant) good sport...

My littles and me...

Sunday, November 10, 2013

School Days

Archer started 4th grade and Della has moved up into the Life Skills class. Here they are on the first day...

I also started school at the University of Houston....

Archer made me a special drawing for the front of my binder. It says "Finn! Brainiacs are Fragile!!!" and has some of his favorite characters from "Adventure Time." I smile everytime I look at it...

I am at school twice a week for about 10 hours a day and Chad has taken over getting the kids off to school when I'm gone. Every day he sends me pictures and updates of how the morning is going. Here is a picture of Sis on the bus...

And here is a picture of Archer on a day that he went to the school nurse saying he was "sick" and needed to go home. He's already done this twice and both days have coincidentally been while I was at school and Chad had to pick him up...

Chad has taken over chores, getting kids to school, and taking them to their various activities while I am at school.  I sent him a picture of my student ID and he whipped up these new ID's in Photoshop and sent them back to me...

Chad got me this super cute backpack. He even purchased some vintage Girl Scout patches from eBay.

Chad and I have acquired some school spirit and last month we went to the UH vs. BYU football game. It was a really good game but unfortunately we lost by one point in the 4th quarter and I honestly felt sadness in my heart about it. To add insult to injury, our family also watched the game but they were all rooting for BYU. That's OK, there's always next year! Go Coogs!

I leave you with videos from the kids' hoedown at school. Only in Texas do they have a square dancing unit in PE. The first video is of Archer. I'm having trouble with Della's and I'm working on it

Sunday, October 13, 2013

The End of Summer 2013

Here is the official Calder Summer Playlist 2013 that Archer and I created. Since the kids are out of school and always with me in the car, it's family friendly. Archer also gets credit for the cover art below:

Uncle Devin came to visit and it may have been the best week of Archer's life. They were able to program Archer's Raspberry Pi. (We are already well aware of Archer's hair style and it's just the way he likes it)...

I'm so proud of my brother Devin. He is back in India for another year working for NextDrop, a start-up that helps aid municipal infrastructure and residents gain access to clean water. You can read more in the Huffington Post and at Tech Cocktail. He turned 20 last month and somehow he's 11 years younger but 8 inches taller than me...

Chad celebrated a birthday and we gave him a mini Strandbeest model for him to put together. The Dutch creator is named Theo Jansen and he builds these 20 foot "beasts" out of PVC. They are wind powered and have an amazing ability to walk using a unique algorithm Jansen came up with. Here is a video Chad shot.

Next Update: Back To School

Saturday, August 10, 2013

Family Vacation to Austin

This year for the first time ever, our family vacation did not entail visiting family. We decided to go to Austin, or more specifically, Bastrop which is 15 miles outside of the capital. We were nervous to travel with Della as she likes her routine and her bed and her couch and her potty and, well, you get the picture. The drive went well and we were hoping this was a good Della omen.

 We stayed at Lost Pines Resort and it was by far the nicest hotel we have ever visited. This was Archer's first hotel experience and clearly all future hotels will be a major let down.

The first thing sis did was lay on the bed showing that our offering was acceptable to her. Again, we hoped it was another good omen. 
After asking some local kids working at the resort for BBQ recommendations we ended up at "Fitties." It was literally a shack on the side of the freeway. The only place to eat your meal was outside on some benches. It was so hot that I rolled up my pants because my ankles were sweating. The owner charmed my kids by giving them free chips (it doesn't take much). He then freaked them out with his warning to not pet the "bi-polar" cat. As soon as we sat down the scary beast climbed out from a tangle of stinging nettle, hissed at us, and then retreated back into it's lair.

The food was amazing. Probably the best BBQ I've had since we moved to Texas. We ordered sausage and brisket (we told Archer it was steak) and they were smoked to perfection. The potato salad was sweet and the coleslaw tangy (and I don't even like coleslaw). For dessert we had peach cobbler and it's hands down the best I've ever had. Ever.

 Then we went to bed. Della slept for 3 non-consecutive hours. Longest night of my life. By the time the sun came up I was close to tears and ready to drive her home myself. Chad talked me down and we developed a strategy.
Since little sis is the (super adorable) dictator of our family, we have to plan everything around her. A lot of people have asked us "Were you able to relax on your vacation?" Chad and I always shrug our shoulders and say "Sort of." We will never have a vacation where we can relax on a beach while the kids build sand castles or do their own thing. It just isn't possible with Della since she would be wandering around, eating other people's food, getting lost, drowning, etc. Relaxing for us means taking care of Della somewhere other than our house. We felt that an all-encompassing resort would be our best option. There were lots of activities to choose from and when Della decided she was over said activity (translation: she's screaming and kicking), our room was just a few steps away.

The highlight of our stay was the lazy river, water slide, and pools. We would go down to the pool area, find some lounge chairs under a giant oak tree, and set up shop. Archer was old enough to wander around to the different pools by himself. Chad and I spent our time together alternating between Della's chosen activities which was an 8 hour cycle of 20 minutes in the water and 20 minutes watching the iPad while eating junk food. Chad and I were able to actually spend time together. It was nice to be reminded that we are people outside of Della's care takers.

Archer is 9 1/2 which puts him in this strange limbo of "not quite old enough" and "too old for."

Pony ride = too old for.
Giant 40-foot climbing wall = not quite old enough.

Zip-line = freaking out and refusing to go down the first time. Then finally mustering up the courage to let go the second time. Then screaming YOLO the third time.

 The hotel offers s'mores every night because who wouldn't want to sit in front of a giant fire when it's 8PM and 95 degrees outside?


Della seems to be posing for someone else's picture...

The second night went better and we got a little more sleep. The next day as we were checking out Della got to take a ride on a luggage trolley. By far the best part of her vacation.

Thursday, July 25, 2013

Summer 2013 Thus Far

I guess the biggest news this summer is that we have lived in Houston for 5 years now! When we left California Archer was 4 and Della was 18 mos. Now they are 9 and 6! It was SO hard to leave our family and friends in California, but we've never regretted moving to Houston.

Chad's mom Marti was able to come and visit us for a few days and it was so nice to have her here. She helped me make my first ever black berry pie with blackberries that we grew. I may have eaten half the pie by myself.
Marti watched the kids while Chad and I went to see Twin Shadow play. We even stayed out past midnight! It felt like we were young again, except for our feet hurt after standing for 3 hours and we got tired around 10 PM. Even so, we had a great time.

Uncle Andrew came to visit this summer as well. Side note: I can't believe anyone comes to Texas during the summer. I guess we are lucky to have people who really love us. Anyway, we took Uncle Andrew to Galveston where we went through a pirate museum, ate ice cream, and then Little Sis said it was time to go home.

Archer really wanted me to take this picture...

Here he is eating pistachio ice cream. Don't you love his hair? It's his own custom style.

Della lost her first front tooth. She's clearly thrilled about it...

Chad had a hankering for "island food" and made a special trip to some crazy market. He ate corned beef from a can (450mg salt/serving), manioc, and taro.

Archer prefers to spend 18 hours of his day at the computer. We don't necessarily see eye-to-eye on this with him. His only exercise is at Jiu Jitsu and so I leave you with this video of him sparring.

Thursday, June 13, 2013

Della's ASXL3 Genetic Research Published

The genetic research that Della participated in studying children who have a mutation of the ASXL3 gene, has been published online. And bless them, they have given free access to the publication. Many medical research articles can only be viewed by those deemed appropriate (like doctors) and often require subscription fees. Anyway, the article is long and full of science-y words, so you may just want to skim. Della is "Subject 3" so you can identify her in the article. There are pictures of the four kids (one who has already passed away) and it is clear that Della is the least severe. The description of her picture uses a few medical terms to describe the physical manifestations of the disorder. I looked up the terms and they describe Della's upturned nose, full rounded cheeks, and deep creases in her palms. All the kids have the upturned nose, deeply creased palms, low set ears, high and prominent foreheads, full rounded cheeks, feeding difficulties, developmental delays, hypotonia (low muscle tone), intellectual disability, and all are completely nonverbal. 3/4 (Della included) also have a high arched palate. The other three children have symptoms that Della doesn't. Some of these include microcephaly, non-ambulatory (can't walk), failure to thrive, bottom percentiles in height and weight (Della used to be), and have a condition that causes the bones in the fingers to grow outward towards the pinkies (limiting the use of their hands). We are so thankful Della was spared some of these symptoms. But I can't help but have some "survivor's guilt" in thinking about the children who have all of the listed issues. My heart breaks for them.

A few terms you might see:

de novo: Neither parent carries the ASXL3 genetic mutation. In all 4 kids the mutation happened spontaneously instead of being inherited and that's what makes this study so interesting (according to docs).

Bohring-Opitz Syndrome: A condition caused 50% of the time by a mutation of the ASXL2 (and sometimes ASXL1) gene. Physical manifestations are very similar to Della's (ASXL3) but kids with Bohring-Opitz have a lot of medical complications and don't live past early childhood. Della doesn't have this syndrome. 

Here is the link to the article:

And for your entertainment, here is Della eating non-toxic water color paints that I diluted in water. I knew that she would "sneak" a taste whenever she thought I wasn't looking. This video shows her "naughty" side and her blatant disregard for my (apparently bunk) authority. Della knows FULL WELL what I am saying. Stinker. Also- I don't usually say no that many times, this was just a demo.