Saturday, April 30, 2011

Diagnosis-iversary.... I don't think that's a word.


Exactly one year ago, On April 29th, 2010, I got the phone call telling me that Dallin had been diagnosed with Williams Syndrome. He has changed so much since then, it's hard to remember what it was like; not knowing why he wasn't growing, or crawling, or walking or talking.

I do remember that day very well. We were in St. Louis along with most of the rest of the Crapo family. My sister Sarah was getting married on May 1st, so we had driven to St. Louis to be there for the celebration. It had been a busy day of driving around town with my mom and sister running wedding errands, like finding goldfish and buying pond plants... you know, the usual wedding stuff. We were all home for the evening and after eating dinner, we were all (about 20+ people) watching The Office on TV.

My cell phone rang, so being at parent's house, I went outside onto the deck. Their house is a black hole with no cell phone reception and your best bet of hearing a call is outside. On the phone was Dallin's pediatrician. He said he had been away from the office for a few days and was wondering if I had heard that Dallin's test results for Williams Syndrome came back. I had not heard so he told me the results: Dallin had tested positive for Williams Syndrome. I don't really remember much else of what he said. I was just trying not to cry and to really wrap my mind around what he just said. I'm sure he was giving me a few facts about WS, things he had just looked up in the 30 seconds prior to the phone call, things I already knew and read about months before. He said that we could meet with him as soon as we got back into town and he could give us some more information (which turned out to be one tiny paragraph copied from a medical textbook, very informative!) and refer us to a Geneticist who would be able to tell us more. I hung up with him and went back inside the house.

I was wasn't quite sure how to react now. Everyone was still watching TV, laughing, totally oblivious to what was going on. I brought Mckay to our room so I could tell him the news. When I told him, I couldn't keep from crying. It's not that I was really that sad. I was actually very happy to have a diagnosis and finally have some understanding of what had been going on with him. But I was worried and nervous about the future. Along with the diagnosis came a slew of other possible complications common with WS: Thyroid problems, kidney problems, eye and ear problems, mental disability, behavior and social problems. Dallin might have more than just a heart condition and trouble gaining weight. There were a lot of emotions to process all at once and the only way to do that was crying. Mckay and I talked about a few things and decided that we should wait until after the wedding to tell people about the diagnosis. We didn't want anything to take away from Sarah and Nate's beautiful day. And it helped to give us a few days to research it more and wrap our heads around it better before telling others about it.

The wedding was wonderful, and it was a great time to reflect on the importance of family and how lucky we were to be chosen as Dallin's parents.
At the wedding reception I saw many old friends and acquaintances. As I told them about our life and how we'd been, it seemed weird not telling them about Dallin having WS. At that moment, it seemed like such a huge part of him and part of our life. Thinking back on it, I realize that it didn't really matter that we hadn't told people. WS didn't change that Dallin was our son. Knowing about it didn't make his heart condition any better or worse. Having a diagnosis didn't suddenly make him start gaining weight. He was still the same amazing little boy with the same struggles, but now we had a name for his struggles.

Over the next few days after the wedding, we started telling our family members about Dallin's diagnosis. By this time we were able to think about it very positively. Now that we knew why Dallin was having those medical problems, we could help him better. We told them that Dallin would continue to have many struggle later in life. We also told them about the wonderful parts of WS. Dallin's very pleasant personality and infectious smile were a direct result of his WS.

It's been a whole year and we've come so far. Dallin is doing so much better now through the help of therapists, doctors, and through the patience (and prayers) of his parents. He is crawling, almost walking, starting to eat food, saying a few words, signing more words, and his cognitive abilities are growing. He is doing very well with his heart and kidneys, and while there will always be new surprises popping up to deal with, his doctors are happy with how he is doing. We have been able to connect with other parents of children who have WS and it has really helped in understanding what Dallin's future will hold. Last year, just weeks after his diagnosis, we were able to participate in a Walk for Williams Syndrome. We are very excited to participate in Indiana's Walk for WS this year in 2 more weeks and we're excited to meet more people. We have the wonderful opportunity to be interviewed by the local news channel next week, and hopefully there will be a story on the news about Dallin (and another local girl with WS) in an effort to promote awareness of WS.

Dallin continues to make us smile every day. I'm constantly amazed by the things he is learning and how much he is growing up.

Wednesday, April 27, 2011

Easter

Our apartment complex had an Easter egg hunt for the kids at the clubhouse. Apparently, the eggs are all found within 2 minutes, so if you are 10 minutes late, there are no eggs left to hunt. But there were some extra not-hidden eggs that Dallin got to have. I think he was so thrilled about having his own basket full of eggs, he didn't even know he missed out on the hunt.

He didn't really care about the jelly beans inside the eggs, but he knew they made a cool noise when he shook them!
Inspecting each egg.

For Easter breakfast, I made a cinnamon "monkey bread"-like creation. It was gooey and delicious!

For dinner we had a traditional Easter dinner: Ham, cheesy potato casserole, homemade rolls, and asparagus.
Dallin liked eating the potatoes and the rolls.

And Dallin learned a trick for Easter. Back in my days of teaching school, I got a whistle so I could help out with P.E. and recess. This whistle now sits mostly unused next to my drum and sock puppet (tools every teacher should have). Dallin found the whistle and figured out how to blow into it all by himself. He couldn't blow out his birthday candles, but a whistle is no problem for him...
video

Thursday, April 21, 2011

Crackers and "Cheese"

This is what happens when Dallin asks you for food and you don't respond right away:
He goes to the pantry and gets his own food.

I'll need to start putting the crackers on a higher shelf.

Tuesday, April 12, 2011

Pictures of Dallin

Here are a few pictures of Dallin from my phone that I thought were pretty funny.

In a few public bathrooms, there is a seat attached to the wall so you can strap your kid in while you go to the bathroom.


It looked so funny to see Dallin just hanging there, kicking his feet.

Making his selection from the vending machine.

This is from one of our shopping trips when we were visiting in California.
Dallin was trying to fit in with the all the other cool kids.

Friday, April 8, 2011

Big Changes

There are some big changes coming up for our family.

One change already happening is that Dallin has started to actually eat solid foods. It's amazing to give him a piece of food and watch him chew and swallow it. He's not eating everything yet; he sticks to soft foods (like mashed potatoes and refried beans) or foods that dissolve (like graham crackers, cookies or cheese puffs). I love being able to sit him down and have him actually consume a bowl of food. It's amazing! My problem now is that I don't know what to feed him. This is new territory! I only know how to feed babies milk. What do you feed them when they start eating?!
He really likes to eat mashed potatoes:
And he makes a big mess when he does it.

Notice the ankle braces Dallin is now sporting.
Here's a close-up:
It's called a Supra-Malleolar Orthosis (or SMO).
It keeps his ankles and legs in a proper, straight alignment to keep his feet in a position more conducive to walking.

Sine he started wearing them almost a month ago, his balance has improved tremendously, and he can stand up all by himself without holding onto anything for 10-20 seconds at a time.
He has even taken a step or to by himself from this position. He's not walking yet, but he is making great progress and his physical therapy is really helping to strengthen his muscles. I imagine he'll be walking on his own sometime this summer.

Another big change is that we're in the process of buying a house. Nothing is signed yet and no decisions have been officially made, but we've been looking at neighborhoods and houses and we have a pretty good idea of what we'd like to get. We're getting very excited about the thought of living in a much bigger, much nicer house in a few more months.


The biggest change is not very big at all right now; it's only about the size of a lime.
But in the coming months, Baby Easton #2 will get much bigger, along with my belly.
I'm 11 weeks along in this picture. I know I don't look very big, but trust me, this baby is growing and I feel bigger!
Our little baby should be joining the family around October 27, 2011.

We are very excited for all the growth and change that we'll be experiencing in the next few months.

Wednesday, April 6, 2011

Dallin is 2!

Dallin turned 2 years old last week. I baked him a cake and he got to lick the spatula.
(Don't worry, I cleaned the spatula off first. I didn't feed him raw cake batter.)

He got to open lots of presents.
He loved the felt food I made him.
I'll post more detailed pictures of the felt food later.

Here he is surrounded by his spoils. We couldn't even get him to look up long enough to smile for a picture because he was having so much fun playing with his toys.
He got a plastic dish/food set to go with his felt food from Grandma and Grandpa Easton. And he got some presents earlier in the week from his Crapo grandparents, including a xylophone which he loves to bang on early in the morning. He was in heaven.

In the months leading up to his birthday, I was so hopeful that he would actually eat his birthday cake this year. And then a week before his birthday, he had a breakthrough! While we were in California, he tried a homemade chocolate chip cookie, and he actually swallowed it! And ate several cookies. Since then he's been trying more food and actually eating it!

He tried the cake...
and he ate it! It's a Birthday miracle!
Mmmmmm, finger lickin' good!

Tuesday, April 5, 2011

Bad Morning

There is a plastic spoon melted to the inside of my toaster.
How is your day going?

Friday, April 1, 2011

Hearst Castle

We're back from California and getting back to life as usual. Here are the last pictures from our trip.

My mom, Dallin and I went to Hearst Castle. It's a huge mansion about 3 hours south of San Jose that was owned and built by William Randolph Hearst. The house was built up in some hills overlooking the ocean. There were a lot of steps to climb just to get up to the house.
There was a beautiful view of the ocean from the house.

This is Neptunes Pool, one of the large outdoor pools.
This house was seriously huge.
And there were 4 separate guest houses too. Although, I don't know why you would stay in a guest house when you could stay in the huge main house.

The interior of the house was very ornate and extravagant. Look at the intricate detail in the tile of the entryway floor.
He purchased many antiques ceilings to have put in his rooms. I didn't know you could buy a ceiling and have it shipped somewhere.
Dallin liked riding on Grandma's shoulders during the tour, and he gave her a nice hairstyle.
I want to have a library like this in my house someday.
And of course, I would need to have the Gregorian Chant lampshade.
The tour was really cool and I was amazed by how much money he could spend on a house.
We stopped at Jack in the Box for dinner on the way back to San Jose.
Dallin helped Grandma finish off her Mint Oreo Shake.