21 Months-Old

And brushing his teeth like a big boy!

Nicholas got his first "real" toothbrush and toothpaste today. We had been using the infant toothbrush for way too long, I think! Anyway, he seems to like getting his teeth brushed better and he loves the taste of his toothpaste. It smells like bubble gum and what kid wouldn't love that, anyway?

It was beautiful outside today so I took advantage of it and did lots of yard work while Nicholas napped. I was surprised to see the rose bushes and hydrangeas starting to grow new leaves and the crocus flowers are already blooming while the tulips are starting to poke through. I guess February seems a bit too early for me, but I am looking forward to spring all the same!

It's hard to believe that in 3 months Nicholas will turn two! It seems like just yesterday we were anxiously awaiting his arrival and soon our "baby" boy won't be much of a baby anymore. He's definitely growing up right before our eyes!

This and That

Nicholas playing "crash" with his cars
Lovely Valentine's Day roses from Jeff

Nicholas's Cars Valentine's Day tattoo from his PT



Soooo...it's been quite awhile since I've updated our blog and I guess because there hasn't been too much going on lately. No news is always good news, I say.



Here's what we've been up to:

• The weather has been pretty nice here this month so Nicholas and I have enjoyed some leisurely walks around our neighborhood while soaking up some winter sunshine.
• Jeff's been busy selling all of his Jeep parts so he can make some modifications and improvements on his Toyota.
• We've been enjoying watching the winter Olympics together...I feel very patriotic about our country this year and love rooting for USA!
• Nicholas and I have been enjoying afternoon naps together. He's been teething, and I can always use a nap after a long day.
• I have been reading like crazy. At one point, I was reading three books at once. Now I am just reading one book at a time.
• I had to work on Valentine's Day so Jeff and Nicholas spent the afternoon together. Jeff surprised me with roses when I got home from work and he got some Butterfinger chocolate hearts. The best part of that day was when Nicholas said "wuv you" before I left.
• Nicholas had a play date last week with Claire and Logan Brumfield, two little cuties from church.
• Nicholas had a speech evaluation with Megan through the ESD. We don't have the results of the eval. yet, but Megan said she will probably start seeing him monthly.

That's pretty much it! Not too many exciting things happening here, just looking forward to some warmer spring weather!

A Beautiful Poem

Today, a college friend of mine, sent me this poem that she had found on a friend's blog. It's so beautiful, I just had to share...

Little boy, my little man, light and love of my life,
So precious, so gentle, you are my shelter, my shining light.

You are totally dependant on me, on your own there is nothing you can do,
But little man, this may surprise you, for I am just as dependant on you.

We seem to make each other stronger, just by us being together,
Sometimes when I hold you, I wish that moment would last forever.

At times when things get me down, I want to just sit with you for a while,
So you can speak to me with your eyes, and run to me with your smile.

Moments we've spent together are some of the happiest I've ever had,
I want to laugh with you when you are happy, and cry with you when you are sad.

I want us to lean on each other as we continue to grow together,
Because the love I have for you, little man, is a love that will last forever.

Some people may see a mountain and think it's much too high to climb,
But to you and I it's simply another hill, it's just a bit bigger this time.

We have some challenges ahead of us, but together these challenges we'll get through,
And I thank God everyday for this special gift, this special gift that is you.
~Kim Ambrose

Happy Birthday, Jeff!

Happy 28th birthday to my wonderful husband, Jeff. You are my best friend, an amazing father to our child, and an all-around wonderful guy. You have brought laughter, joy, and peace into my life and I am better person because of you. I am looking forward to dinner at Skamania Lodge tonight and your poker party tomorrow. I hope your 28th year is one of the best!

Love you, honey!

Winning Feels Great

Wow! What an exhilarating week! The Gwendolyn Strong Foundation was one of the winners in the Chase Community Giving campaign on Facebook. And while they didn't win the one million dollar grand-prize, they placed 6th out of 100 charities which is simply amazing in itself! Over 51,000 people voted which means over 51,000 know about SMA. They money for research is awesome, but I think the awareness is so important. Awareness brings support which is what SMA needs right now, especially in a time when a cure is so close.

I personally had over 370 friends and family members vote for the Gwendolyn Strong Foundation and had about 30 friends constantly posting the voting link, encouraging all of their friends and family members to vote. Instead of feeling like I ran a race by myself this week, I feel like so many loved ones carried me through the finish line. When I would get discouraged by the leader board votes, I would read my wall filled with messages of love and support and that is what kept me going. I have never been so humbled by such unwavering support of not only our family, but all of the other families affected by SMA. The stories and videos that other SMA families posted touched so many hearts that I know this disease will never be the same. People know what SMA is. They know how heart-wrenching it is for a parent to watch a child suffer from SMA. I am confident that a cure is within our grasp.

Thank you to all the supporters of the Gwendolyn Strong Foundation! We appreciate your votes more than you will ever know!! If you would like to read Bill and Victoria Strong's message, please click HERE.

A Mother's Worries

Every mother will tell you she worries about her child. A scraped knee, a lost teddy bear, a teenager's first broken heart. But as a mother of child living with a terminal illness, my worries are very different...

I worry when my child sleeps an hour past his regular waking time, for fear that he's no longer breathing.

I worry when my child cannot cough up mucus from a regular cold, for fear that the mucus is entering his lungs causing pneumonia.

I worry when my child has difficulty holding a spoon or a crayon, for fear that his muscles are deteriorating faster than we think.

I worry that if my child does not start putting on some weight, he will need to have a feeding tube surgically inserted into his stomach to feed him.

I worry that someday when he realizes he is different from other kids, he will ask us, "Why can't I walk?"

I worry that kids will make fun of him when they see him in his wheelchair.

I worry about leaving Nicholas, even just for a few hours, for fear that he might not be alive when I return.

I worry that someday if Jeff and I have healthy children, they will never know their wonderful big brother. They will never know how smart he was, how silly he was, how he could tell you exactly what he wanted with his facial expressions, how much he loved to cuddle, to sing, to play. They will never know how much he loved Dora or Max & Ruby, they will never know how happy he made his mommy and daddy, or how many lives he touched.

I worry that every day is the last day with my child.

This is just a short list of the numerous worries I have for Nicholas. I would give anything to worry about a scraped knee, a lost teddy bear, a broken heart.

My friends and loved ones, what would you do if this was your child, your nephew, your cousin, your grandchild? Wouldn't you do absolutely ANYTHING you could so another parent wouldn't have to experience these kinds of worries?

Please take 30 seconds of your day and vote for The Gwendolyn Strong Foundation in the Chase Community Giving campaign before Friday, Jan. 22nd at midnight. http://voteforsma.com/. Please post this note and ask your friends to vote as well. It may just help save our child's life.

Guess Who Turned 20 Months-Old Today?

Our little munchkin is now only 4 months away from turning two...and as Nicholas would say, "Wow, wow!" I can hardly believe so much time has passed since he was born, it literally seems like we brought him home from the hospital yesterday.

Today was very busy for us. Nicholas had a 9:00 a.m. therapy appointment a Shriner's, then a two hour nap, then more therapy with Julie and Ashlee (pictured above). Then this afternoon the Lewis kids came to visit and after they left Nicholas and I took a two-hour nap because we were worn out! Jeff, Nicholas, and I enjoyed a yummy pizza dinner (it was Jeff's night to cook), and spent some time cuddling together watching TV and reading. Daddy gave Nicholas his bedtime bath and the bottom photo is a cute little smile after he got out of the tub and was getting his jammies on. What a wonderful day to turn 20 months!

Nicholas, you are the strongest, bravest, cutest, most lovable boy I know. I would not have changed one second of these 20 months. Mommy and daddy love you with our whole hearts!

Writing With Chalk

I have been so busy recruiting my friends and family members to vote for The Gwendolyn Strong Foundation over on Facebook that I haven't had much time to blog! Anyway, go to http://voteforsma.com/ to cast your vote to help SMA...there's only 3 days left so we need all the support we can get. It only takes a minute and it's completely free. If you don't have a facebook account, sign up for one and if you don't want to keep it, simply delete it at the end of the week-simple as that.

Here are a couple of photos of Nicholas sitting at his little table. I painted the top of the table with chalkboard paint awhile back but Nicholas hasn't used it much because of his disability. However, now that he is wearing his body brace most of the time, he does just fine sitting in one of the little chairs and coloring on the table. We wrote his name together and then he colored a rainbow of scribbles on his own. He sat there for a good ten minutes and played and I couldn't have been more proud!

Chase Community Giving on Facebook

The Gwendolyn Strong Foundation (http://www.gwendolynstrong.com/) received a wonderful opportunity to win a $1 Million dollar grant from Chase Bank because of incredible wide ranging support, but now they need help on getting the word out there letting people know how to vote starting January 15th. And because you can only vote for GSF one time in the final round, we need to work extra hard to get beyond our networks and reach new people to vote for GSF. With your help, together we WILL see an end to this cruel disease!

So, in addition to VOTING, please commit to at least 3 things YOU will do from January 15th to January 22nd.

• VOTE: go to http://voteforsma.com/
  
• Email friends the voting link
  
• Post the voting link to your Facebook status all week long
  
• Blog about GSF and the $1M miracle to cure SMA
  
• Twitter the voting link
  
• BE ANNOYING (we mean persistent:) ALL WEEK LONG! In addition, here are some of the creative plans brewing by our supporters. Will you go the extra mile by doing one of these, too?
  
• Flyer ---> Download, print, and pass out our campaign flyer. This is especially useful for large groups or people who you don't have email addresses for such as schools, churches, and businesses who you have a personal relationship with. Click here to download the flyer.
  
• Make it Easy ---> Have your home or work computer open to the voting page - http://voteforsma.com/ - and tell every person you see to vote. Each person has to log in, but that's it. Simple and brilliant! People are setting up a voting station at local places in the community. Could you set up a voting station at your work or somewhere in your community?

• Contact Groups + Organizations ---> People have asked the organizers of groups they belong to to get involved by emailing a personal plea with the link - http://voteforsma.com/ - to sorority lists, mom's clubs, company lists, book clubs, alumna and professional organizations, etc. potentially reaching thousands of members! Do you belong to a group who would send an email to its members???

• Direct Message Facebook Friends ---> Since this is on Facebook, a direct message with a personal plea to all of your FB friends goes a long way. So in addition to posting it on your status, send an email to every Facebook friend. In fact, on http://voteforsma.com/ there is a button that reads "Invite a Friend". By simply clicking this and checking the boxes, you can message your FB friends to vote for GSF. Will you take this extra step?

• Contact BIG bloggers ---> Several people have or are planning to contact bloggers with a large following they think would be a good fit. Imagine if hundreds of people blogged about GSF and posted the video! Do you know any bloggers you can ask to help?

• Get Students Involved ---> One teacher incorporated GSF into her lesson on "grassroots" and posted the voting link - http://voteforsma.com/ - on the board for her students to write down and visit at home. They are excited about making a difference. Come Jan. 15, I smell a homework assignment :) Do you know any high school or college students willing to campaign for us on Facebook?
  

Please vote for The Gwendolyn Strong Foundation sometime between January 15-22. We NEED your help.

THANK YOU SO VERY, VERY MUCH!

Our Blog Book Has Arrived!

I was so excited when the FedEx guy dropped off our first book this afternoon! I uploaded our 2008 blog entries (after reading another SMA mom's blog about the book she made) and created this keepsake that we can enjoy for years to come! I am now working on a book for 2009...which is proving to be more work than 2008 considering how much I blogged last year! If you want to turn your blog into a book, go to: http://www.blurb.com/ and follow the directions on how to upload your information. I highly recommend making one!