The Draz Fam

Gillette 02/03

Nana Barb — Sat, 04 Feb 2012 18:33:18 +0000

You know that lock-down is creating a bit of cabin fever when Karli gets excited about accompanying Drew and me to Gillette. On Monday I mentioned that we would be going on Friday. Thereafter, every few hours she asked me to count the days. You would think we were heading off on a Disney cruise.

When the day finally came Karli even took off her pajamas and put on real CLOTHES! With all that anticipation I decided I better make sure she had a good time. We had only two appointments: one with a doctor and the other with a technician to adjust Drew’s AFOs. We were done in about 45 minutes; then it was time to have some “fun.” We had lunch, Karli played with some of the toys, we enjoyed a golden retriever therapy dog and we ended the day with a special request by Drew. Gillette is connected to Regions hospital where all the Draz children were born. Drew loves to visit the Birth Center, so we often include a visit on our Gillette days. When we enter one of the nurses asks if she can help us. When Drew explains that he and his sibs were born there he gets the royal treatment. Yesterday he watched a newly born baby have his first bath. Then the nurse put the baby right by the window. Drew was mesmerized.

It’s hard to hear Drew in the Animoto video above. He is telling “his fans” why he loves to visit the Birth Center. This is so adorable that I posted it below. Turn up your volume and enjoy:

Nana Barb
Enjoy the little things, for one day you may look back and realize they were the big things. ~ Robert Brault

Karli Moments

Nana Barb — Fri, 03 Feb 2012 00:01:20 +0000

We continue to take a picture of Karli each day. Actually we usually end up with several images. The only days we have missed since her birth were a couple when Drew was in PICU. The following pictures (along with the story of each image) are some of my favorites from the last few days:
Now that Ryan is at school during the day, Karli and Drew are really developing a close brother/sister bond.

“Nana, let’s have a tea party.”

Karli is very attached to her “blankies.” She even sits on the washing machine to keep an eye on them while they are being washed.

“I’m wearing Drewbie’s turtle shell.” (That’s what we call his brace.)

I had some packages delivered from Amazon. Karli thought one looked especially interesting and took it upon herself to open it. We were all puzzled as to how it got opened until Karli announced, “I’m sorry!”

Last but not least, my favorite. This morning Karli picked up her “cell phone” and announced, “I’m sending a text to mom.”

Nana Barb
Today Drew, Karli and I spent some time learning and reading about Groundhog Day. We looked at videos on YouTube, learned about groundhogs and checked outside to see whether the groundhog would see his shadow in Woodbury. The quote of the day follows:
Me: Today we learned all about groundhogs because it’s Groundhog Day.
Karli: Well, tomorrow must be Giraffe Day.

Drew’s Video

Nana Barb — Thu, 02 Feb 2012 01:23:42 +0000

Drew loves the Draz Fam Animoto videos. Last weekend he asked me to export them all to YouTube so that he can watch them without scrolling through the blog to find his favorites. Now he can go to my YouTube channel (NanaMeland) and quickly select any video.

On Saturday Drew decided to make an Animoto video of the day. I took pictures throughout the day and today we uploaded them to Animoto. Then Drew spent about an hour choosing the perfect song.

Saturday was a typical winter weekend day. In the morning the children spent some time playing in bed; I’m not sure why they were playing with my robes or why Ryan wrote all over Drew with markers??? In the afternoon they drew (an American flag) and played with snow. Of course there was some iPad time and reading. I hope you enjoy Drew’s video:

Nana Barb
Having Parkinson’s “is part of an amazing life. And not an ‘otherwise” amazing life, it’s part of what makes my life amazing.
Michael J. Fox

Helping Ry

Nana Barb — Sat, 28 Jan 2012 20:14:16 +0000

When Drew and Ry were little, they always said, “Drew does the thinking and Ry does the doing.” Of course, Ry continues to do most of the “doing” when they play. However, the other day there was an interesting twist on this. They were playing a current favorite iPad app. The game required some skill with special timing and movements to get past a certain point. I had failed miserably to master the movements earlier in the week when Drew asked for help. Drew, however, showed uncharacteristic persistence in mastering this part of the game. Eventually Ry reached that part and, unable to master it, asked Drew to do it for him. Drew proceeded to make a few swipes on the iPad and Ry was set to go. Way to go, Drewbie!

Nana Barb
Carpé diem quam minimum credula postero. ~ Horace (Roman poet).
Translation: Seize the Day, put no trust in tomorrow.

Ryan

Nana Barb — Wed, 25 Jan 2012 20:29:49 +0000

I’m going to begin this post about Ryan with a statement about Drew. Despite Drew’s considerable physical disabilities, his quality of life is amazing; no one who knows Drew would dispute that fact. What may be surprising to some readers is the identity of the person I feel is most responsible. While Drew’s parents, aunts and uncles, grandparents, cousins, sister, doctors, teachers, and therapists all contribute; there is absolutely no question in my mind that Ryan is, hands down, number ONE!

Yesterday as I sorted the laundry I noted that Ryan’s jeans had a hole in one knee.

Believe it or not, this is a first for Ry. Why? Because, unlike most children, he did not spend time playing on the floor during his toddler years. Rather, day after day, he sat in a chair across from Drew so that they could play on Drew’s tray.

Ry is having a great year in first grade. He is a good reader and catches on to math. Ry has always struggled with small motor skills. Although he is improving, his printing is very difficult to read. Interestingly, at home he loves to write, color cut and paste. This is an attribute I especially admire in Ry: while most of us avoid things that are hard for us, Ryan embraces them.

Ryan is the middle child; he has a physically disabled, smart, savvy older brother and an adorable, sassy younger sister. Yet Ryan is most definitely his own person. Although, like any child, he has his off days he describes most of his days as “fabulous.”

Ryan has decided he is going to buy a home being built down the street from us.

Ry chose the enormous house because he has invited everyone (including me) to move in with him after he buys the house. He and Drew have big plans.

Ryan’s position in the family gives him an advantage in developing people skills. Those skills, along with his enthusiasm about working on things that are difficult for him lead me to predict future success in whatever path he chooses. I can’t wait to see how he chooses to use these skills in the years and decades ahead.

Go, Ry!
Nana Barb
Don’t be afraid to fail. Be afraid not to try. ~ Michael Jordan

Making Memories

Nana Barb — Tue, 17 Jan 2012 21:32:06 +0000

Three quick stories:
1. Karli’s big-girl bed.
When Jen was about six she decided that she HAD to have a canopy bed. After an extensive search we found the perfect one. She loved it so much that I was determined so save it in case she had a little girl of her own. Every time we moved over the years Jim patiently moved the frame and canopy. Finally it was time to pass the bed on to Karli. We retrieved it from the basement, made a few repairs and set it up. Karli was thrilled–until it was actually time to go to sleep in it, that is. It has now been set up in her room for several weeks. Each night we ask her whether she wants to sleep in her big-girl bed and each night the answer is, “Maybe tomorrow!”

2. Picture time.
Karli is certainly accustomed to having her picture taken; after all we’ve taken at least one picture every single day since her birth. Usually she is cooperative, knowing that the sooner she gives us her “pretty smile,” the sooner we’ll be done. Lately she has become more resistant; guess it was inevitable. Here’s what happened when I saw her playing in the shower the other day.
Me: Karli, you look so cute. Let me take your picture.
Karli’s response:

Me: Karli, I’ll give you a treat if you let me take your picture.
Karli: What kind of treat?

Me: Some ice cream.
Karli’s response:

3. Fun with Auntie Dana.
Dana visited on Saturday. She cooked a wonderful dinner for us and built a paper towel tower with the children.

Nana Barb
“A life-long blessing for children is to fill them with warm memories of times together. Happy memories become treasures in the heart to pull out on the tough days of adulthood.” Charlotte Davis Kasl

Another Day at Gillette

Nana Barb — Mon, 16 Jan 2012 05:21:36 +0000

On Wednesday Drew had several appointments at Gillette Children’s Specialty Center. Drew, Karli and I dropped Ry off at the bus stop and then headed for Gillette. We saw three doctors and two technicians; every single one of these professionals were amazing. They are competent, compassionate, creative and open-minded. They listen, ask questions and confer with caregivers when making decisions. When we first visited Gillette about six years ago, the center occupied a small space next to Regions Hospital. Since then Gillette has expanded many times over and has become the go-to center for children with neuro-muscular diseases. I am virtually certain that there is no place on this planet that Drew could receive better care. In addition to the three physicians he saw last Wednesday, he sees an additional four docs on a regular basis. I am so very thankful for the care that Drew receives; I only wish that every child with SMA could receive similar care from this amazing team of doctors!

If you are a regular visitor to the Draz Fam blog you probably noticed that Karli is wearing clothes rather than pajamas in the video. I began the day before the visit to Gillette telling her that all the other children would most likely be wearing clothes rather than PJs. On Tuesday evening she was till adamant that she preferred to wear her pajamas. On Wednesday I asked her to reconsider; she ran to her dresser and put on a pair of shorts. I told her that it was cold and we were expecting snow that day. At that point she ran to the dining room window and spent the next 15 minutes watching for snow. Eventually she tried on a couple pairs of tights. They were “too tight.” This was not surprising since we have not updated her clothes for several weeks due to the fact she will only wear pajamas. Finally I suggested she try a pair of jeans. She added a Christmas shirt, I breathed a sigh of relief, and off we went!
Nana Barb
All I really need is love, but a little chocolate now and then doesn’t hurt. ~ Charles Schultz

A January Weekend

Nana Barb — Wed, 11 Jan 2012 00:43:59 +0000

With the holidays over and lock-down in full force I thought it might be fun to blog a typical January weekend. I began taking pictures early Saturday morning. As it turned out, the weekend wasn’t exactly typical as we had more visitors than usual.

The children started the day with a pancake breakfast. Soon Auntie and Tommy arrived with some new games. The games were carefully selected by Auntie to be games that use the brain so Drew was able to participate fully. We also began a 50 state quarter collection. We’ll be studying the states one by one. Each time the children will add that particular coin to their collection. Years ago I began collecting the quarters, so I plenty of the first 25 that were issued. Then I got busy and stopped collecting. Once we get past the first 25 states Jen will probably be bringing rolls of quarters home from the bank as we search for the rest of the states.

During the afternoon the children played with colored play putty while Uncle Matt put up new book shelves and a huge world map in our room.

In the evening Kelly, “Big” Ry and Elliott arrived for a visit. Everyone shared pizza, time in the hot tub and had a wonderful time!

On Sunday the children were thrilled with a visit from Lindsay. Due to our unseasonably warm weather the boys went outside for some football with Papa.

We are blessed with so many caring friends and family that help make lock-down not only tolerable, but actually great fun!

Nana Barb
Act as if what you do makes a difference. It does. ~ William James

Top 11 Draz Fam Events of 2011

Nana Barb — Fri, 06 Jan 2012 15:50:20 +0000

After considerable discussion, the Draz Fam has arrived at the top 11 events of the past year. So, in no particular order, imagine a drum roll…
1. The Draz Fam visited the San Diego Zoo.

2. Drew and Ry went to Zoo Camp.

3. Jen got promoted to Senior Human Resources Manager, Assistant Vice President of US Bank.

4. The Draz and Juhl families celebrated Great Gramma’s 95th Birthday.

5. Ryan started first grade.

6. Ry moved in with Drew and me to be our nighttime buddy.

7. Jen won the waterslide contest, adult division, and Ryan won the children’s division at the Westin Resort in Scottsdale.

8. Drew and Ry went fishing on a pontoon boat.

9. Karli learned to swim.

10. Muumuu and grandpa celebrated their 50th wedding anniversary.

11. The Vikings beat the Cardinals. (This was Drew’s choice. Unfortunately I don’t have a picture as I didn’t realize it would be so noteworthy at the time of the game.)

Now it’s time to start collecting memories so that we can list the top 12 events of 2012.
Nana Barb
Carpé diem quam minimum credula postero. ~ Horace (Roman poet)
Translation: Seize the Day, put no trust in tomorrow.

New Year’s Eve and Day

Nana Barb — Wed, 04 Jan 2012 01:40:34 +0000

New Year’s Eve: Last year we were able to fool the children. We set the clocks ahead a few hours. When they read 12:00 we watched the ball fall (a previous year’s celebration on YouTube) and headed for bed. Drew was confused when he noticed the clock on my nightstand read 9:30; I pleaded ignorance.

We knew that we wouldn’t be able to get away with setting the clocks ahead again. Jay had to work and neither Jen nor I wanted to stay up until midnight with two tired boys, so we just told them that we were all going to bed at 9:00 this year. We did some celebrating during the early evening. First the boys headed outside with Papa for some football. Then we all headed for the hot tub; it was strange to have no snow as we celebrated the last day of December.

On New Year’s Day cousin Tommy came for a visit. Everyone headed back to the hot tub; it finally snowed so the ground was white as we welcomed January, 2012.

In the evening Jen and I enjoyed some wine. For whatever reason we decided that it would be fun to go to the new Woodbury Super Target???? We enlisted Papa as our sober driver, told Karli she was going on an adventure (trust me, Target is exciting when you’re in lock-down), and off we went. Drew put in a request for Quakes and Ry wanted dry erase markers. Jen and Karli spent a LONG time looking at clothes. However, since Karli wears pajamas 24/7, and there were no PJs that caught her eye, much to Jen’s dismay we left with no new clothes for Karli.

At the end of the day the children enjoyed snacks, iPad time and some bedtime stories.

It’s been a wonderful year for the Draz Fam. Watch for our top ten events of the year.
Nana Barb
Yes, I know I’ve used the following quote before. There are more profound quotes about welcoming the new year, but this is my favorite:
Cheers to a new year and another chance for us to get it right. ~Oprah Winfrey