Love it!

Nicholas got a package in the mail today from our dear friend, Teresa.

Teresa, I guess this means you think Nicholas is as adorable as we do!

Thanks for thinking of us and I am so sorry we missed you while you were here for a visit. Hope you enjoyed your trip!

A Day of Firsts

Today Nicholas had a lot of first-time experiences. Yesterday we had dinner at Jeff's grandparents' house and his Aunt Stacy gave Nicholas a mylar balloon. Now he has always loved playing with balloons, but today was the first time he actually hit the thing with some force! So much force that he toppled over after I took this photo.

A few weeks ago I was driving by Hathaway Elementary School's park and noticed these great swings. I thought that Nicholas would love them and I was right! He sat perfectly upright in this one and enjoyed me pushing him on the swing, unless I pushed too hard and then he fussed, so it was little tiny pushes that he liked best.

As you can see from the previous photo, Nicholas had a hard time keeping his eyes open to take a picture because the sun was just so bright, and mama forgot his sunglasses, so we tried mine, but, unfortunately they were slightly too big!

After a ride on the swings we went through the Dairy Queen drive-thru to get Nicholas a blizzard. (For those of you wondering...yes I made it through the drive-thru, car unscathed). Anyway, I bought Nicholas an Oreo Blizzard and got myself some vanilla soft serve that I topped with fresh raspberries when we got home. As I was feeding Nicholas his heavenly deliciousness, I read the Blizzard cup that said that Dairy Queen has donated over 77 million dollars to children's hospitals! Way to go, DQ!

Here he is enjoying his very first Blizzard...I know he was dying to say, "Yummy, thanks mama!" And of course he couldn't finish all of it before nap time, so Jeff got to enjoy the remaining yummy-ness when he got home from a long, hot day of work.

A Wave of Sadness

Most of the time I'm fine. Most of the time I focus on all of the positive things in my life: our sweet son, my wonderful husband, amazing parents, good friends, a home, etc. But sometimes the seriousness of Nicholas' illness completely overwhelms me and I just...feel...sad.


I look at other kids in our neighborhood running through sprinklers on hot summer days and am sad that Nicholas may never do that. I see babies taking first steps on chubby little legs and am I sad that our baby boy never achieved that milestone. I look at Nicholas's angelic little face and wonder how long I get to stare into those beautiful hazel eyes of his. Five months? Five years? Thirty-five years? And no matter how long it will never be long enough.


The one thing that completely overwhelms me and makes me feel completely helpless is when I read comments on the Petition to Cure SMA from parents/loved ones/friends/family members who have lost a child to SMA. "How do they get through it?" I think. "How in the world do they do it?" My hearts breaks for each and every loss and I spend several minutes reading each comment and heaving heavy hard sobs, my eyes blurred with hot tears. Then my thoughts wander to my own strength and I wonder if I can do it, or if I will even have to.



I pray every single day without fail for a cure for our son and the many other children who are affected by Spinal Muscular Atrophy. I want him to stay as healthy as he is now for as long as possible so that one day in the very near future his neurologist will call us and say, "Come in right away! Researchers have approved a cure for children with SMA, come in to our hospital and get Nicholas the treatment that will save his life!" That day will be the best day. I will be happy. I won't have to constantly worry about losing my child. I won't feel this sadness anymore. My little boy will be okay. The wishes and dreams his daddy and I had for him before he entered this world will come true. That is my perfect ending.

Busy As A Bee

Nicholas has been absolutely LOVING blueberries this summer! He wants to eat them for breakfast, lunch, and dinner.
He has also really enjoyed playing with a musical toy given to him by my co-worker, Diane. The parts move much easier than most of his toys, so he has no problem manipulating the animals and buttons to produce noise!

I honestly thought the Gustafson household was going to enjoy a lazy, relaxing summer, but nothing could be further from the truth! After our Vegas trip things have been getting much more busy around here. I finally finished my summer class today, but I still need to work on my research paper for my final thesis which I will present to my committee in November. I can't wait to graduate with my masters degree in education in December!!!

We have also had some fun at events...

My mom and I threw a bridal shower for my cousin, Danae, who is getting married in August...



and Nicholas and I went to Talon's Transformers-themed birthday party at Big Al's.



Dr. Sussman, Nicholas's orthopedic doctor, asked that Nicholas start wearing his KAFO's during the night while he sleeps to help straighten his legs. He slept in them successfully all night last Thursday. But with this heat wave, we have decided to keep them off of him for the next few nights. It's just too darn hot!

So in a nutshell that's what the Gustafson's have been up to in the last few weeks! How has your summer been?

Fundraiser for a Friend

A good friend's sister-Angie (Balholm) Watts-was recently diagnosed with non-Hodgkin's Lymphoma. She is a wonderful woman who is married with three young children. There will be a fundraiser to help raise money for her treatment on Saturday, August 8th from 10:00am to 3:00pm at Washougal High School's Fishback Stadium. Adults pay $20.00 and can walk or run the track. There will also be food and beverages available with all proceeds going to the Watts family.

If you are unable to attend this event, please consider donating to the Angie Watts account at your local IQ Credit Union.

Playdate

Today a dear friend of mine from my elementary school days, Brienne, and her cute little son, Micah, spent the afternoon with Nicholas and me. Nicholas enjoyed meeting Micah for the first time, as he kept saying, "hi" over and over again. Brienne and I literally took a walk down memory lane when we walked down the street to look at the home in which she spent her childhood. It was a beautiful day and so much fun to catch up with an old friend!

Thanks for coming over Brienne & Micah...you're welcome here anytime!

14 Months Old

Sorry this photo is a little blurry, hopefully you can see Nicholas is standing in the stander that is on loan from Shriner's Children's Hospital and he is playing with a toy given to him by his physical therapist, Katie. It spins easily when Nicholas moves it and calls out alphabet letters and makes animal sounds. It's one of his favorites! We also let Nicholas watch some of his favorite cartoon-Max & Ruby-while he's in the stander. He really seems to like being in there so far!

Happy 14 months darling baby boy! Mommy & Daddy are celebrating every single day with you. We love you with all our hearts!

XOXO

Hot Summer Days

Yesterday we went over to Jeff's friend, Ben's, new house to swim and visit. Ben proudly brought out a child's water float that the previous owner had left behind and we quickly agreed to let Nicholas try it. He sat in it and cried, then laid on it and cried, so....
Daddy held him...

Then mommy held him...


and he was all better and enjoyed the day in the sunshine!

Las Vegas Trip

First night out at the Pink Taco at the Hard Rock Hotel...all the girls: Charlotte, Eva, Rachel, Jami, Sam, Shelly, me
Shelly and I in the VIP area at the nightclub

Shelly, Jami, and I


Getting Jami's hair ready for the wedding

The beautiful bride

Mr. & Mrs. Kalmbach

Jeff & I at Jami & Kris's wedding

Saying their vows

First kiss as husband and wife

The MGM Grand Hotel

One of the lions having a snack

Standing right below another one

Our huge, golden hotel Mandalay Bay

The turrets of Excalibur

Jeff & I rode this roller coaster at New York New York...one of the best ones we've ever been on!

The replica of the Statue of Liberty on NY NY

The show in Caesar's Palace Forum shops about the Roman God of water, Neptune

Jeff & I in front of the Trevi Fountain in Caesar's Palace

The fountain show in front of the Bellagio




After the water show some random guy made us balloon hats


Kris wasn't thrilled about wearing his

All of the guys in front of the Bellagio

Whitney, Jami, and me

A rockin' cover band that played at our hotel



Putting on jackets, gloves, and boots to go inside Minus 5, an ice bar inside Mandalay Bay. Unfortunately we couldn't bring a camera inside...but the whole bar was made from ice: the glasses, chairs, table, bar, walls, everything but the floor!Jami and I laughing and warming up outside of Minus 5

The fabulous wave pool at Mandalay Bay




Our visit to the Shark Reef Aquarium at Mandalay Bay

Touching sting rays at the aquariumA lion fish

The jellyfish tank
A reef shark swimming fast

Jeff & I had a great time in Vegas! We saw many of the hotels, dined at yummy restaurants, and enjoyed our time with friends and family! It was an average temperature of 112 degrees there every day, which made walking outside (even at night) very hot. We rode the tram and took cabs whenever possible to avoid heat stroke. We also enjoyed swimming in the wave pool and floating in the lazy river at our hotel. Jami and Kris's wedding was beautiful and we feel so lucky that we could be there to celebrate their special day with them. It was a memorable vacation and so nice to get out of town for a few days, however, we we thrilled to come home on Saturday and see our baby boy who we missed so very much!