Monday, August 8, 2011

SMA Awareness Month

Well it's been a long second half of July. We're still trying to figure out what's going on with Skylar... We went to the doctor a few weeks ago and there weren't any definite symptoms of anything, and there hasn't really been any this whole time. We're seeing high heart rates regularly (letting us know she's uncomfortable and possibly in pain) but no fever or anything else. We've gotten a few stomach issues that have come and gone, but nothing consistent (which makes us think it's not just teething). We think there might be some bladder issues, but have no definite test results to stand on with that either.

She's not really able to come off her bi-pap anymore and so we're learning how to live with the equipment 24/7 until she gets better... we know there's a chance that she won't be better though. That's the unfortunate thing with a degenerative disease. We're still getting giggles here and there and tylenol is our new best friend so we're doing alright.

Please pray for our Nurse Natalie. She suffered a severe broken arm last week and will be out of work for months. Not only will we miss her tremendously, but she's got 4 kids at home and won't be getting a paycheck while she's out of work. We are trying to find out what her needs are at this time to see if we can help her family as a community. We'll keep you posted if there is a way to help if you're interested.

A few weeks ago, some good friends of ours from high school had an emergency c-section (the cord was wrapped around the baby's neck multiple times and her movement had slowed) and both survived and were doing well. However, shortly after, the baby was moved to the NICU and was struggling to eat well. Days later, they received the diagnosis of down syndrome (unrelated to the emergency c-section). I went to visit and took some pictures for them. It was a great visit and was so much more full of hope than my last visit to the NICU at Northside. Even though they were facing a serious diagnosis that will change their lives, their child has the hope of living a full life. It may be different than what they imagined, but that doesn't mean the future holds any less importance. In fact, I think it's quite the opposite.

So like I said at the beginning of this post - it's been a long second half of July. As more and more suffering is made visible to me (I learned of a new disease called EB when I found a mom's blog about her child with it and was completely horrified, a friend's family member was murdered last month, a husband abusing his wife and family, etc.), I am just so thankful for the hope that one day we will no longer have to deal with the broken world we live in. I look forward to the time when there are no more tears, no more pain, no diseases, and we are able to live how we were originally created to live. I am so looking forward to getting a hug from my little girl!

I don't want to be a Debby Downer so I'll leave you with some positive updates as well...

Here's the swing picture I promised... Daddy did a great job! We ended up using foam that we had in her crib to make the swing comfortable and it also holds her in place better. We obviously are gentle with the swinging so she doesn't roll out, but she really seems to enjoy it! Her tv is mounted in such a way that we can turn it and watch movies while we swing :)

The GA Chapter of Families of SMA is finally moving forward with events now that we've had some time to get established. We are looking to have a family meet & greet this month so that families in GA can put faces to names and hopefully build relationships with people who are going through the same things in life. More details coming soon.

Our first fundraiser is scheduled for AUGUST 27th! Mark your calendars if you like to paint, want to learn how to paint, or just want to have fun while getting messy to raise money for SMA. We'll be painting a funky owl that you can give to a friend with kids, hang it in your own kids room, or just have in your amazing art collection :) Many of you who keep up with my blog know that I went to a "Paint Away SMA" event in Knoxville, TN to support one of our favorite SMA families - the Gooden Family. I had so much fun that I wanted to do the same thing here in Atlanta and found out the store, Sips N Strokes, has a location in Sandy Springs. The studio holds up to 80 people so make sure you register online at by going to their calendar of events for the Sandy Springs location and then click on the funky owl on August 27th to sign up. The cost is $35 and Families of SMA will be getting around $10 for every person who comes. If you can't make it this time around, don't worry because we'll be doing one again in the winter when there's not much to do outside.

We also support the Hope & Light Foundation and are extremely excited for the "Dine Out Night" event where restaurants donate a portion of the proceeds from one evening of operations to the Hope and Light Foundation. YEAH Burger, which is one of my favorite places to eat (best bison burger and onion rings!!!) will be participating this year so come and join us for the fun on September 22!

Okay, I'll be updating the blog soon with any new details so the next post shouldn't be as long :) Thanks for reading and stay tuned!!!

1 comment:

  1. hey Ashley, keep me posted how we can help Nurse Natalie. I'm going to tell my small group about the Aug 27 event! see y'all soon. praying for y'all.