Wordless Wednesday

Happy National Down Syndrome Awareness Month

October is National Down Syndrome Awareness Month! This year we are excited to participate in The Buddy Walk™ ! Last year we didn't go but this year we are SO there! The Buddy Walk™ is a 1-mile walk to raise funds and awareness, and to promote inclusion and acceptance of individuals with Down syndrome. We thought it would be fun to create a "team" (thanks for the encouragement Shawn & Kate) so Grace has a website. We are so thankful for our sweet little angel. We are so glad that Heavenly Father sent her to us!

Randomness

Okay, first of all, does she look like a doll? The answer would be yes...and a very cute doll at that!
While Nae Nae was visiting us, Grant was able to use his charm to get her to buy him ANOTHER Halloween costume. Every house does need a dragon around--our little "Eggbert" as he calls himself, keeps us very safe.
Grant really is such a funny boy. While we were driving to the park today, he told me that he was going to go on a mission to the mountains with polar bears. And then he stated that when he got big and was like daddy, he was going to get a girl and get married in the temple. I asked what kind of a girl he wanted to marry and he replied, "I want to marry Grace!" I explained that we don't marry our sisters and so he thought for a minute and exclaimed, "I know, I want to marry Hadlie!" He then thoughtfully asked me, "Does Hads love Heavenly Father and Jesus?" I answered that she did and so he said, "Oh good, then I will marry her and after that I will dance with her." Sounds good, Bug!
We just found out that Grace has scarring in her lungs. We will be meeting with the surgeon on Oct. 7th in regards to getting her g-tube and nissen. The scarring is from her problems with aspiration and all of the pneumonia that she gets. Hopefully, with the g-tube we won't be dealing with pneumonia every 4 to 6 weeks. She has been such a trooper through all of the testing and she is getting more and more patient with getting hooked up to her monitors every night. Pretty much we have the cutest, sweetest kids in the world!

Our Sweet Friend Lucy

Those of you that follow our blog might remember our beautiful friend Lucy. She has Spinal Muscular Atrophy (SMA) Type 1. I wanted to post the announcement that her mom, Cherisse, posted on their blog. We think this is a great cause so we wanted to pass it on. We love you little, angel Lucy.

Photo by A Little Sussy

Dear Family and Friends,

Some of you know that in March of this year, our now 10-month old daughter, Lucy, was diagnosed with Spinal Muscular Atrophy (SMA) Type 1. SMA is the leading genetic killer of infants. The disease is a terminal, degenerative disease that affects motor neurons, resulting in progressive muscular atrophy and weakness. There is no treatment and no cure for this disease.

Recently, there has been groundbreaking news on a very promising treatment for SMA. They are in need of funding to get the treatment FDA approved so the clinical trials can begin January of 2010.

Several families that have been affected by SMA are uniting to raise $5,000 each to go toward this treatment, and we have decided to unite with them! Ever since Lucy was diagnosed, I have really had a desire to do something - something more than just surviving each day. I want to help raise money to find a cure, help other families who need assistance, or just spread awareness. When I heard about this promising treatment, it brought a little hope to each day.

Being a mother to Lucy's older brother and sister and taking care of Lucy takes most of my day and I wasn't sure how I would be able to do something (or anything) more. When our friends, the Strong's, asked for families who would like to help, I thought, ‘we can do this’. I feel like this goal is attainable for us and, although I am not one to ask for help…especially for money, we have many family members and friends who have asked what they can do. So, if this is something you feel like you can/will support, please use the ‘Unite for the Cure’ button below and forward on to those you feel would be interested in this cause. Regardless of your ability or desire to donate, we are so incredibly grateful for the thoughts, prayers and kindness of all those with whom we have come in contact.

With much gratitude,

Chad and Cherisse Lunt

www.chadncherissefamily.blogspot.com

*To donate, please click on the "Unite for the cure" button below and then click the "Donate Now" Button. Read Instructions on that page and then click the "Click to Donate Now" Button. Make sure to put Lucy's name in the message box so that we can keep track of our goal.

Betrothed

Can we do a betrothal? Hadlie and Grant are so cute together. Every day, Grant asks where his "Hadwie Girwool" (Hadlie Girl) is. I seriously wish these two would get married after Grant's mission...the wedding announcements are already being drafted-

Shawn and Kate B. are delighted to announce the marriage of their daughter
Hadlie to Grant Barrow
Son of Adam and Jacqulyn Barrow

The rest of the details have yet to be worked out. Honestly though, we love Shawn, Kate, Hadlie and baby Kennedy! We have had SO much fun playing with them. Last weekend, Shawn and Adam took the kids to the little nursery across the street from us while Kate and I ran open houses for our complexes. The kids enjoyed hot dogs, lemonade, cotton candy, face painting (as you can see) and they even painted flower pots with Snapdragon's in them for me and Kate. After they came home, we had Kate come over and we all enjoyed watching BYU win another game. It was also fun to have Nae Nae here with us...we are never letting her go home! Fun times in the Barrow household!

Why Wait?

Tonight, Adam was home sick and Grace was asleep so Grant and I went on a date. What did we do, you ask? We went to the mall! And what do you do at the mall on August 24th...2 months before Halloween? Duh, you buy a Halloween costume! That's right, last week when we were walking around the mall for fun, Grant was telling everyone that he was going to be a lion for Halloween. I decided that I might as well buy his costume now and let him enjoy it.
I considered making a costume because I really enjoyed doing it last year but let's admit it- when you don't have a sewing machine...making costumes is a pain in the derriere. As soon as we got the lion ensemble, Grant wanted to put it on and "scare people!" So that is just what we did. Grant scared people, some ladies asked if they could take his picture and he said no, he ate some yummy chocolate and then our date came to an end. Sort of...
When we got home, he thought he should try on part of Grace's costume. As you can see the shoes fit him even though they are supposed to fit a 6 month old and the head thingy kind of fits him and so in the next few days we will be taking those accessories back. If they fit bug there is NO way they are going to fit our tiny, little butterfly.

Friends and A New Accessory

Gracie has a new accessory. Lucky for her she only has to wear it when she sleeps. Her oxygen saturation levels have been dropping at night (and when she eats) so we will be doing some tests in the next few weeks to figure out what is going on. In the meantime she gets to acclimate herself to her new O's.
She aspirates when she eats (every type of food from plain liquid to solids) and because of that ends up with pneumonia about every 4 to 6 weeks. Her pulmonologist thinks that there is scarring in her lungs because of this. So we are waiting to schedule her sedated CT scan. On Monday, she will have another echo done to make sure that the low oxygen levels over a long period of time have not caused damage to her heart. Her heart murmur has been more pronounced and she has been sweating a lot when she drinks a bottle. Also, her skin has been looking a lot more mottled. But hopefully everything will be okay there. We will keep you posted! Grant has been so cute with Grace (as usual). He will often ask me if Grace needs her oxygen and whenever I put her down for a nap or to bed, he tip toes in to check on her. She is lucky to have such a great big brother!

Speaking of Grant, a few weeks ago, Hadlie and baby Kennedy came to visit us. Grant was so happy to have someone to play with. Building forts is a lot more fun when you have someone other than mommy to build them with!
Plus, Hadlie can fit inside a lot better than mommy can! He is killing me lately...he hates me to take his picture!