This and That

Little baby in her princess towel Nicholas is starting to love Ella more and more...except when she flails her arms and legs and accidentally hits him
The kids' stockings are ready for St. Nick to fill them on Christmas Eve
Nicholas has been feeling so much better since we started him on a new amino acid diet last Thursday. He gets juiced fruits and veggies with his AA formula and gets pumped breast milk at nap time now. He is sleeping better, his stats are higher, he is talking more, and moving his hands and fingers more. His old formula was just too difficult for his body to break down and digest so we are relived to find a better diet for him!Here he is holding his "wand" and a new ping-pong ball. They are among his new favorite toys!

I mentioned in a previous post how much Nicholas loves watching Finding Nemo and my friend, Catie, took note. She sent Nicholas this faux aquarium which he enjoys watching while he falls asleep.

Catie also sent Ella a lot of clothes that her daughter has outgrown so now Ella's closet is packed full of adorable outfits. Thanks, Catie for thinking of our kiddos!

My two precious children

Family Photos

Just a few days after Ella was born, we had our first photos taken together as a family of four. My best friend, Lyndsey, who was here visiting from California took these beautiful photos of us. Photos are something I treasure because I love to have our lives documented with images. Our family photos are my most prized possessions and (as Victoria Strong said) "the first thing I would grab on my way out of the house in a fire."

Thank you, Lyndsey, for photographing our little family of four!

Click here if you are interested in seeing more of Lyndsey's fabulous work.

Christmas Tree

The cutest little elf
He wanted to hold a "ball"
Christmas jammies
The best presents under our tree
All finished!

We love unpacking the ornaments for our tree every year. It is a tree of memories. There's the Glenda the Good Witch ornament because I played her in my high school's production of the Wizard of Oz, an angel that one of my students gave me my first year of teaching, Jeff's tractor that we bought the first year he started his apprenticeship training, Nicholas's first Christmas ornament, and many, many more. I love to spend time looking at each one, trying to remember who gave it to us and how long we've had it. Our tree doesn't have a theme and it may not be the prettiest in the block, but I wouldn't have it any other way. Each ornament represents a little part of our life and that's just the way we like it.

Movin' and Shakin'

It never ceases to amaze me how much our baby girl can move! She does many things at 2.5 months that, sadly, our precious little Nicholas was never able to do. This video shows her moving and shaking one of her rattles before bedtime the other night. These simple milestones are so wonderful to witness and make me so happy.

This is SMA Video

The Strong family, who started the Gwendolyn Strong Foundation (named for their daughter), put together an awareness video about Spinal Muscular Atrophy to show at their annual golf fundraiser. It's absolutely beautiful and I hope you will all take a few minutes to watch it. Nicholas and I feel so honored that his birthday picture made the final cut...look for us at 0:40.

Click here to watch the video.

We also wanted to thank our friends and family members who left such kind comments about my previous blog post. Nicholas is doing wonderfully now and thankfully we have not had any more scares. We feel so blessed to be loved by each and every one of you.

Life is Fragile

Yesterday I had to save my child's life. It was the most scary thing I have ever had to do. I am still numb with shock and can cry at the drop of a hat because I cannot believe it happened.

Nicholas had just woken up from his afternoon nap and I suctioned him quickly, buckled him into his car seat, put Ella in the car, and began driving the six miles across town to pick Jeff up after his first day of work (he carpools). On our drive, Nicholas was coughing a little bit and I felt very guilty that I hadn't taken more time to suction him. He looked uncomfortable and tired, which is unusual for him because he loves to ride in the car. His car seat is behind my seat so I can keep an eye on him in the rear view mirror at all times while I am driving. As we drove through town, his coughing got worse and I kept talking to him to try to soothe him and to see if he was okay. Just as we were about to make a left-hand turn into the Shell Station where Jeff was waiting for us my son stopped breathing. His eyes were wide and panicked. I screamed at the top of my lungs, "Breathe, buddy, breathe!"

It was 5:00 p.m. and there were dozens of cars zooming past us. I couldn't make a left turn. My son couldn't breathe. I put my car in park in the turn lane, unbuckled Nicholas from his car seat and pulled him from the car, saw that his lips were starting to turn a purplish-blue. I cleared his airway with my finger, turned him upside-down and swept his airway again (and this time cleared a large amount of mucus), saw that he was still not breathing, and laid him down on the drivers seat to administer CPR. I gave him one huge breath, checked for breathing, swept his airway again, and gave him another huge breath. After I gave him the second breath, he began to cry and breathe on his own again. I scooped him up and held him close to me and sobbed. By this time, a woman across from us in her car, who was taking a right-hand turn, started yelling, "Are you okay? Can I help you?" I told her my son stopped breathing and that now he was fine and I was going to cross the street and pick-up my husband. I put Nicholas back into his car seat and drove to get Jeff.

As soon as I saw my husband, I lost it. I started sobbing uncontrollably. Jeff got Nicholas out of the back of the car and held him in his arms the six miles back to our house.

As we were driving home I realized that no one stopped to help us. No one stopped to make sure we were okay. The only person who seemed concerned at all was the woman across the street. At one point there was a car that pulled up behind me to take a left turn, and they just went around us. Now, this whole situation only lasted a couple of minutes, and it was dark so passerbys couldn't really see what was going on, but it left me with a sense that others just don't take time to care. People are so busy in the mundane tasks of everyday life, that they cannot see that a child almost lost his life last night. It made me feel really, truly alone.

Nicholas is fine now. We brought him home after that scare and gave him what we call a treatment, his respiratory therapy, to clear out the rest of his secretions. He spent the rest of the evening watching his favorite cartoons, talking, and playing like nothing eventful had happened at all. Jeff and I kept hugging and kissing him all night and are so thankful he is still here with us. It make us realize that

life

is

fragile

We don't know how much time Nicholas has, or how much time any of us has, for that matter. It makes us remember that we should live each day to the fullest. We need to tell our friends and family how much we love them, how important they are to us. Every moment with our son is so special and we are so glad we will continue to have many more moments with him.

Just Us

Brother and sister tees

Our not-so-little guy lounging on the couch watching his new favorite movie: Finding Nemo
Daddy adores his baby girl


She's an excellent sleeper

A bit of snowfall at home this week (can you tell Jeff took this picture)

The following photos are all from Thanksgiving...

Eric and Tina

Dinner at my Mom and Dad's house. Nicholas wasn't feeling so great and wasn't too happy about getting his photo taken

We had dessert at Kris and Jami's house-Grandma Steph, cousin Zoie, and Ella

Me with my sister-in-laws-Jami and Eva

a turkey day nap

This Thanksgiving a spent a great deal of time reflecting on what I am thankful for this year:

1. That Nicholas is still here with us, and all things considered, doing pretty well despite his SMA.


2. Our sweet baby girl who joined our family just 10 weeks ago. She's a wonderfully delightful baby. God knew we needed another easy-going baby because having a child with special needs monopolizes much of our time and He sent us the perfect girl.


3. The fact that Jeff just got a job after being laid-off for three months! We desperately need to keep our health insurance for the kids (especially Nicholas) and with Jeff working, we won't have to worry about losing it or paying a ton for it.


4. Having a warm home during these downright chilly autumn days. I know that in this economy many people no longer have a place to call home and I know that we are very lucky to have our own little place to live.


5. That we live in a country where we have rights and freedom. There are many countries that are under the control of their government and we are blessed to live where we can make choices based on how we believe.

There are many, many more things I am thankful for, but these five top the list this Thanksgiving.

Shop to End SMA

It's that time of year again...time for holiday shopping! If you are a person who does their Christmas shopping online, then please consider using this website:

http://www.shoptoendsma.com/

There are thousands of national retailers to choose from and all retailers donate a portion of your order to SMA research via the Gwendolyn Strong Foundation. It's fast and easy and the best part is-it's free! Just click the link above and shop to your hearts content!

Thank you & Happy shopping!

Tummy Time

Baby Ella is growing up right before our eyes! Last night she was spending some time on her tummy and she lifted her head so high off the ground. I was surprised and amazed being that she's only nine weeks old and also because Nicholas never was able to achieve this milestone. We are so proud of our little munchkin!

Snow Adventure

This morning Jeff and his brother-in-law, Kris, went four wheeling in Jeff's truck at Three Corner Rock which is ten miles Northeast of Skamania. There was 36-40 inches of snow to play in and they had a great time. They only got stuck once and used Jeff's wench to get the truck out. All the photos of snow makes me hope that we will have a white winter this year!