Little Friends

Tonight Nicholas and I went to my oldest friend, Katie's, house for dinner. We had some yummy food and Nicholas loved playing with both Katie & Grant and KC & Angie's kiddos. Gwendolyn (the only girl in these photos) is crazy about Nicholas and helped feed him his bottle and kept him entertained with books and songs. Jesse (the oldest boy in these photos) was so sweet to Nicholas. He tickled him and kept telling me how cute Nicholas is. Tripp (the other baby) is almost 17 months old and Nicholas lit up when he toddled over to say hello. They are all such sweet kids and we had a wonderful evening!

Thank you for having us over Lewis family!

A Gift

Remember a few weeks back when I explained how we decided to put down our dog, Jake, after he attacked and bit our neighbor? Well, rest his soul, he left us a little present...they are small and black and can jump really far...

Can you guess what it is?!

That's right...fleas!

Ugg...so disgusting! I hate those things, they make me feel all itchy and dirty. So two days ago I flea bombed our house and felt relieved to get rid of all those little buggers, except now Jeff and I have spotted 3 live ones must have been wearing gas masks because they made it through the extermination.

So my question for you is...how the heck do you get rid of them? If you know me well, you know I am a clean freak, so this is really stressing me out. Any suggestions would be greatly appreciated!

Orthopedic Devices

Look mom! I can stick my finger in the air holes!
We picked a groovy design

Today Nicholas had an appointment at Shriner's Children's Hospital. A couple of weeks ago he was fitted for a body brace and feet braces and today they were ready for us to pick up. Nicholas doesn't mind either of them at all. They fit him really well. The body brace allows him to sit up really straight. We are suppose to have him wear it more and more each day so that eventually he will wear it most of the time. The leg braces (AFO's) are to help keep his legs secure and straight when he is using the stander. We ordered a stander today for Nicholas and are exited to get it so he can start putting some weight on his little legs. It should also help his respiratory function and will help develop his hip bones.

One of the most exciting things Nicholas got to do today was drive a power wheelchair. Molly (his PT) and Denee (his OT) put him in a Spree they had at Shriner's and hooked up the joystick so it was at the right level and let him drive all over the physical therapy floor. At first he just went in circles, but after a little while he was going both forward and backward. He loves the freedom of being mobile! It was so cute to watch. My mom and I just kept smiling and giggling because it brought him so much joy! He is going to get lots of practice at Shriner's on their chair and we will order one of his own when he can manipulate it well or by his 2nd birthday (which ever comes first).

Jeff and I have noticed Nicholas's strength improving in the past few weeks, and are hoping that his new equipment will help him have even more success in everyday activities!

A Bit of Nature

The weather has been so beautiful the last two weeks, so I have been taking advantage of it and doing lots of work in our yard. Here are a couple photos of the potted plants on our patio. I am excited to use some of the fresh basil I planted in some of my summer dishes! Jeff and I have also been working very hard on putting in new flowerbeds, a sprinkler system for the grass, and planting new plants in the yard...pictures of those things to come very soon!

Tub Time Fun

Shampoo mohawk...
makes me happy!

Playing with the new boat that the Darlings bought Nicholas for his birthday. Mason Darling LOVES boats and picked it out especially for Nicholas. It came with a fishing pole, 5 fish, a captain, a life-preserver, and 3 cups. Nicholas loves his new bath toy!

Thank you Nate, Erin, McKenzie & Mason!

Time to Party!

Today was Nicholas's birthday party with family and friends. Nicholas enjoyed every second of his special day. Here he is smiling at his new Grover toy.

Sporting his birthday tee.

The other kiddos at the party enjoyed playing in my parents backyard in the beautiful sunshine!

Yummy monkey cake! So good! Thanks, Barbi!

Playtime with mama. Nicholas likes to throw himself backward and giggles uncontrollably. I guess since he can't move much, this is his fix!

Thank you to everyone who came and celebrated Nicholas's big day! Nicholas LOVES all of his gifts and we loved seeing all of you! Happy birthday baby!

A ONE-derful Day!

Guess who turned one today?! Nicholas was very interested in his large brightly wrapped gifts from mom and dad.
Mommy spent the morning baking cupcakes to celebrate the big day.

After a yummy dinner, Nicholas opened his gifts. He got a teddy bear from mommy's co-worker, Diane...

A car and lots of cute clothes from Gramme and Grandpa...

A water floaty for summer and a...

fun new table with a computer, a phone, a piano, and a book from mommy and daddy.

After all the present opening fun, Nicholas got into his birthday suit + diaper (how appropriate!) and we sang "Happy Birthday" to him. Gramme taught Nicholas how to blow out his candle yesterday, but he must have forgot, so mommy had to help him because he just wanted to touch the pretty flame!
Then he had his first taste of cupcake and kept looking at mommy to see if the mess he was making was okay.
What a yummy cupcake!

Happy First Birthday, buddy! Mommy and daddy love you so very much and hope you enjoy every minute of being a one-year-old!

Neurologist Visit at Shriner's

Today was Nicholas's first appointment with his neurologist, Dr. Barry Russman. Dr. Russman is extremely knowledgeable about SMA and was so friendly and personable. Nicholas, my mom, and I liked him straight away. First off, he told us about a new drug that is being used with SMA patients that is looking very promising for overall strength in children. He said that because Shriner's is a research hospital that he will be able to prescribe it as soon as it becomes available for use. He said that he is hoping it will be available to Nicholas within 6 months to 1 year. (Sorry all you SMA parents, he did not tell me the name of it-I will ask next time we see him in June).

He then asked me about Nicholas physical movement at this time and observed him for awhile and told us that Nicholas seems to be a weak type II, meaning that while he cannot sit-up on his own for an extended period of time, he can sit up for a few seconds, and he is eating well and breathing well on his own at this time. I am so glad we made the decision not to travel to Utah, because Nicholas most likely would not have qualified for that study anyway.

I had a list of questions for him and he answered them all with thoughtfulness and patience. He recommended that we not start Nicholas on Valporic Acid & L Carnitine because after listening to Dr. Kathy Swoboda speak on the data from the Carni-val Type I clinical trial in Utah, the drug showed very little improvement in gross motor function in young children. He also referred us to a pulmonologist at OHSU who will evaluate Nicholas in a sleep study. The sleep study will determine how many apnea episodes Nicholas is having at night while he sleeps, if any at all.

We also saw a speech therapist, a dietitian, and had Nicholas fitted for leg braces and a body brace. The leg braces will help keep his feet straight and steady when he begins to use a stander and the body brace will help his posture and hopefully off-set scoliosis. He did great the entire 4 1/2 hours we were there...even without a morning nap!

We are so grateful to have so many amazing doctors dedicated to helping our family. We honestly feel so lucky to live so close to such a great place that truly cares about children.

The Unofficial First Day of Summer

Today we went out on the Columbia for the first time this year. It was a beautiful 82 degree day without any clouds or wind. Nicholas enjoyed it much more this time than he did last year. His Tumble Form seat was perfect for him to sit in on the Wakesetter because he had the perfect view of daddy doing this....
He kept saying "dada, dada, woo-oh!"

Daddy dipped Nicholas's little toes into the cold water, but only for a second because the river is still very chilly!

Nicholas enjoyed lounging in the sunshine with mommy. Mommy and Nicholas were laying on the back of the boat and were looking at and talking to...
Daddy, Uncle Eric, and Aunt Jami who were standing on the platform.




Our family is looking forward to many more boating trips on the Columbia River this summer!

Yum, yum!

Nicholas is not only feeding himself crackers by hand, but he has also learned...
How to feed himself using a spoon!

And he loves to do it!

He feeds himself 5-10 spoonfuls of food at a time then likes to take a break and let mommy or daddy feed him for awhile. We know he's ready to feed himself again when he starts grabbing for the spoon.

We are so proud of our big boy!