Sunday Fun Day

This afternoon we took the boat out on the Columbia River to one of our favorite spots: Ackerman Island. We were joined by lots of friends and family and had a fun day! We set up the volleyball net and played several games while the kids splashed in the water, dug for fresh water clams, and ate lots of sugary treats. Spending the last days of summer out on the water is a great way to soak up the last of summer's fun before fall makes its arrival. 

Toddler Bed

Last night Jeff converted Ella's crib into a toddler bed. We decided to do this because our little escape artist was crawling out every day and we hope the toddler rail will decrease the likelihood of an accident. We discussed the option of buying a crib tent to place over the top of the crib which allows children to get out only when a parent lets them out. After some discussion, we felt it best to just convert the crib to allow our munchkin some independence. We are happy to report that the first night was a total success (which is ironic because our expectations were not high). Ella went to bed at 9:45 p.m. and slept until 9:20 a.m. I fully expected to walk in her room in the morning and see toys and books strewn about, but there were none. We can only assume she slept peacefully all night. She is also napping there right now and hasn't been up once. She seems very excited about being able to get and out of her bed as she pleases, and because she loves her sleep, is perfectly fine with staying put when its rest time. My good friend, Leslie, has promised to transform her crib bumper into pillows for her new bed and I know Ella will love them and that they will add another dimension of comfort from her baby days. We are so proud of our big girl!!

SMA Awareness Month

 

For us, the month of August is all about awareness for Spinal Muscular Atrophy (SMA). Our four-year-old son, Nicholas, has SMA along with thousands of other people. In fact, 1 in 6,000 babies are born with SMA. That means that 1 baby born every 12 hours world-wide will be diagnosed with SMA. Spinal Muscular Atrophy is a genetic condition that affects a child's ability to move. Children with SMA usually never crawl or walk and most never achieve the ability to sit-up on their own. This also means that they cannot do simple things that most people take for grated: scratch an itch, wave hello, or turn pages in a book. SMA is similar to ALS (Lou Gehrig's disease) as it deteriorates a person's muscle tone over time, eventually resulting in death when the person affected can longer swallow or breathe on their own.

 The illustration above shows how SMA is passed on from parent to child. Both parents must be carrier of the SMA gene and almost every family who has had a child diagnosed has absolutely no history of the disease. Every time a couple conceives a child, there is a 25% chance that child will have SMA, like Nicholas. There is also a 25% chance the child will not have SMA and will not be a carrier for SMA, like our daughter, Ella. Ella will never have to worry about having a child with SMA as she is not a carrier. Even if she married someone who carries the SMA gene, there is no possible way she can conceive a child who will be affected. There is also a 50% chance that the child conceived by two carrier parents will not be affected but will be carriers of the gene like his/her parents.  A simple blood test can determine whether or not parents or children are carriers. Both Jeff and I were tested after Nicholas's diagnosis and Ella was tested tested in utero. If you are pregnant or thinking about starting a family, you can ask your ob/gyn about the SMA blood test. 

I love this photo of American Idol artist, Kelly Clarkson wearing a Gwendolyn Strong Foundation (GSF) awareness bracelet at a recent concert! Celebrities are starting to help spread awareness which is very exciting for everyone in the SMA community. Another awesome celebrity, Josh Duhamel, who is an actor, recently posted on his facebook page about Cashel Gardner's SMA project: SMA it Forward. Cashel is a fifteen-year-old boy living with SMA and he wants to get 1 million likes on his facebook page by his birthday in January 2013. You can click on the link above to like his page and do your part to help spread awareness.

There are such wonderful things going on in the efforts of medical research to find a cure for SMA. We recently learned that a very promising gene therapy program has been fully funded to begin human clinical trials in 2013. The trial will most likely start with type 1 newly diagnosed babies, and then older children and adults will be able to join in the trials if everything goes as expected. This means that a cure for Nicholas is probably several years away, but in the meantime we pray that many, many other lives may be saved!! In order for this trial to begin FDA approval is needed. You can read more about this exciting news on angel Avery's blog. Even though Avery's life was very short, she continues to do BIG things for the SMA community. Her story touched so many hearts, she is the main reason this trial has now been fully funded. You will never know how grateful we are, Avery!!!

To learn more about SMA and how you can help spread awareness, please visit the Families of SMA website.  

Lil' Helper

Yesterday afternoon Ella got out the kids' little piano and helped Nicholas play it. It was one of the sweetest things I have ever witnessed. His gigantic smile shows how happy he was to play with his little sister and how much he loved that she initiated play with him. These are the moments I live for as a mother. These are the moments I treasure in my heart and will remember forever. I am so blessed to have these two munchkins in my life. 

Weekend Fun

We had such a fun weekend! This is a photo of some Caprese Naan I made on Friday. It was delicious!!

 Ella is starting to be more interested in playing games on the iPad. She really likes the Duck Duck Moose Apps.

 Friday afternoon was super hot so Ella spent some time playing outside in the pool. Nicholas opted to stay indoors since temps in the high 90s are no fun for him. 

 On Saturday Jeff surprised Nicholas with this little plane they put together. Nicholas thought it was so cool and was excited to fly it when we went to the park later that day.

 Ella loved the swings more than ever and wanted to swing almost the entire time we were at the park. 

 She also liked the slide.

 Nicholas enjoyed watching Ella...

 but he liked flying his new airplane with daddy even more!

 Ella and I went to an antique store when my friend, Lyndsey, was here and I came home with half of a glass chicken since Ella broke the bottom half. Any ideas what I can do with it?

 I didn't get any photos...but Saturday night Jeff and I had a date night with friends and went to dinner at Fuji Sushi and watched the new Batman movie at Cinetopia. It's so nice to spend time with my husband, sans kids.

 Sunday afternoon we went to our annual block party for the first time after living in our neighborhood for six years! All the other years we always had some other event to attend or Nicholas was in the hospital, so it was nice to finally make it and meet some more of our awesome neighbors!

 Nicholas loved watching the kids play soccer.

 Ella ran around everywhere chasing the kids and eating her weight in desserts and sugary drinks.

 Ella was worn out at the evening's end, so sweet Grace gave her the princess treatment and pulled her around in a make-shift wagon. She loved every minute of it.

I love weekends that we can spend so much quality time together as a family. I feel abundantly blessed!

Global SMA Candle Lighting Event

August is Spinal Muscular Atrophy (SMA) awareness month, so I have been posing lots of facts and links on my facebook page. I haven't been as diligent about posting here on the blog, so this will be one of a few more I will post this month. This is a photo I took last Saturday night. Every year on August 11th, people around the world light a candle for all those warriors (still living) and angels (gone to Heaven) affected by SMA. We were happy to do something so simple, yet so extraordinary to honor our son and all his sweet little friends. Looking at all the candle photos on facebook warmed my heart and brought a smile to my face. Thank you to all of our friends and loved ones who participated in this candle lighting awareness event!!

We Love The Yeomans Family!!

Last Saturday my bestie, Lyndsey, arrived with her husband, Keith, and their adorable baby boy, Henry. It was so wonderful to see the three of them and as always, the trip was much too quick. They left to go back to California on Tuesday afternoon and we have been missing them ever since. 

Isn't Henry the most adorable baby?! I could stare into his bright blue eyes all day long!

 Ella shared her rocking giraffe with Hen and he enjoying rocking with his daddy's help.

 Lyndsey read Hen and Ella some books. I loved watching Ella give Henry his first taste of juice.

 Henry and Ella took a bath together one morning. It would have been fun to put Nicholas in there too, but he is getting so big, I know they would not have been comfortable. 

 Story time again. Ella just followed Lyndsey and Keith and Henry everywhere. She was enamored with our guests and wanted to be in on all the action. 

 Thanks, Adriane, for this awesome book! Ella loves it!!

 I took a bunch of photos right before the Yeomans left...

 It's surreal to see our kids together. After twenty years of friendship, spending most of them talking about marriage and kids, to finally see our babies together is simply amazing!

I love my godson!!!

 Ella copied Henry and crawled all over the house following him. Maybe she needs a younger sibling? 

We did lots of other fun things while the Yeomans were here: we went boating on the Columbia River, had a BBQ with high school friends, shopped at Camas Antiques, and Lyndsey took Ella's two-year photos and some of our family. I was having so much fun, I didn't think about taking pictures of those things, I guess. We had a simply wonderful time and so did our kids. Luckily all the children slept well at night and had a blast together during the day. I was so emotional when they left. I think I cried most of the afternoon and my kids kept looking at me like I was crazy. It's just really, really hard to live so far away from my best friend. It's difficult now more than ever because she has such a sweet son who I wish I could see all the time. It was so hard knowing that the next time I see Henry he will have grown and will be walking and talking more. Thank goodness for Skype and FaceTime! I don't know what we would do without the amazing technology we have at our fingertips. All in all, it was the BEST VISIT EVER but much, much too short. I could have added on a few more days of kissing Hen's adorable, chubby cheeks!

We love you so much Lyndsey, Keith, and Henry!! Please come visit again soon!