Fun Updates!!!

Hey Everyone,

Thank you to all who voted in the shutterfly contest! We have not heard the results yet, but we will let you know as soon as we hear something. We appreciate all of your support - even something as small as a click to vote!

We survived the snow and never had to use the generator, although we were very prepared :) It was funny because most people were getting stir crazy after three days of the crazy ice that wouldn't go away, but nothing really changed for us. If anything, it was nice because we were staying warm had a beautiful snowy scenery to look at out the window.

So before I get to the fun news, I just want to share with you all that the 19th was Skylar's 14 month "birthday" and our 1 year anniversary of getting an official SMA diagnosis from our pediatrician at her 2 month check-up. That day, I was supposed to have lunch with Kyle's mom after our appointment. I remember leaving the pediatrician's office hysterical crying and people at the check out desk asking me if I needed a room to calm down. I remember thinking, "lady, this is as good as it's going to get for a while" but I think I said politely that I was okay to drive. I called Kyle's mom crying to tell her what had just happened. We still met for lunch and I remember being very encouraged by her words despite the diagnosis. I was also in shock. It felt so surreal. Sitting at Taqueria Del Sol on the patio, looking at the ATL skyline with Skylar in her car seat next to me... Surely this is not happening. This can't be real. My daughter can't be dying.

Today, the 22nd is the one year anniversary of hearing the diagnosis from the neurologist. Even though I had heard it just two days before from the pediatrician, hearing it again for the second time cut just as deep and made it all the more real. I cried a little bit, but luckily Kyle was there to hug me and comfort me. We left from the neurologist's office to go to Florida for a cousin's wedding since Skylar was still "okay" and we could travel with her. Our doctor's motto was "the sooner, the better" for everything. We enjoyed a break from reality with extended family and didn't let them know about Skylar until after the trip.

As much as those are days I don't like to remember (reading back to "The Night Shift" post this past March), it is so nice to celebrate these "1 year" marks with Skylar still with us and doing well all things considered. It's also very funny to read my past posts knowing what I know now. I have learned so much in such a short period of time... I feel like I have gone through college all over again with a pre-med degree between the genetics, nursing, respiratory therapy, physical therapy, pulmonology, GI, medical equipment, etc. To think I started Clemson majoring in biochemistry... who knew!

Anyway, enough of the flashbacks - onto the fun stuff!!! We got a lot of fun packages this week!

First of all - a huge thanks to the Grindle family for sending us a switch-adapted toy for Skylar to play with. For those of you who don't know, Skylar can barely move her arms and even her hands are getting weaker so she can't hold stuff or pick something up to move it. Ben's grandpa has been making switch adapted toys for him since he is very similar to Skylar and has a lot of extra ones. They are typically really expensive, but Ben's grandpa figured out how to make them at a relatively low cost. This enables Skylar to actually close her hand around a "switch" to activate a toy instead of pushing a hard button or something more difficult. THANK YOU SO MUCH! What a fun package to get this week!

Speaking of fun packages, Blankets4SMA sent Skylar a wonderful spring fleece blanket that is very nice and bigger than our other blankets which is perfect for her to grow into a little bit. Thank you B4SMA!!!

Drum roll please... Skylar is getting a big girl bed!!! In fact, she is going to be using Kyle's twin bed from when he was little. Grandpa Jones brought it to our house for us and now Kyle just has to put it together. We'll get pictures posted soon. It's fun because now that I know my baby is a girl, I can pick out some girlie colors for the bedding if Kyle will let me :) I love what we have now, but it might be fun to change...

An even bigger drum roll please... We went to the GA Aquarium!!! That's right, we got out together as a family and went somewhere fun :) Not only did we go somewhere fun, but we got a special private tour after hours so we didn't have to come in contact with all the kiddos carrying germs during normal hours or deal with the stress of crowds and creating a scene if she needed to be suctioned or anything worse.

I mentioned doing this a while back to our hospice social worker and she put is in contact with Meg, a lovely woman from Children's Hospital in the PR dept., who worked with the aquarium to get it set up. A really sweet lady named Martha was our volunteer tour guide and was fabulous! She was patient with our taking care of Skylar and went at our pace. We were able to see everything close up and Skylar was totally captivated. She was a little cranky at first because we had to wake her up from her nap to get there on time, but I think she forgave us once we got there. It was amazing!!!

We first went into the Ocean's Ballroom where there is a big glass wall looking into the large tank with the whale sharks and Skylar loved watching the sharks swim by. Her eyes would follow them every time!


Our next stop was the window to the beluga whales. As soon as we got there, I had to suction Skylar so I had my back to the window and Skylar was facing the tank. As I was suctioning, I could tell something had her attention... I turned around and saw a huge beluga whale literally right over my shoulder head to head with us. It was nodding and turning and seemed to know what was going on and was communicating with us. It freaked me out at first, but I am so fascinated by animals it was really a very neat experience. The belugas were so full of personality and very friendly. I think we could have stayed there all night! I know I could have!


This was a fun picture to take because in January or 2006, Kyle and I went to a black tie event here with my dad and step-mom and had our picture taken in front of the very same window when we were dating. It's one of my favorites pictures although I can't find it on my computer to post right now...


We walked through the huge tunnel and it was fun to have all the fish swim over and around us. Skylar seemed to enjoy it! The huge rays and different varieties of sharks were incredible! We had watched Finding Nemo (still her favorite) before Skylar's nap to get pumped up for the aquarium visit :)


This was Skylar's face most of the time... no smiles, but she typically doesn't smile for things like this. We could tell she was really enjoying it because she was completely relaxed and entertained and didn't need suctioning all that much. Her eyes were locked on whatever we were in front of throughout the whole tour. You could tell Skylar was just taking it all in. She was such a good girl. I hope we can do this again for her in the near future.


She tuckered out at the end because she was off bi-pap for a really long time and only had an hour nap for the whole day. It was so great to finally get out somewhere fun with her to a place I know she would enjoy. She always liked sitting in front of the tall aquarium in the Children's Scottish Rite Hospital lobby so I knew this would be a hit! It was a truly special night that I will always remember. I am very thankful that we had the opportunity to do this. In the spring, we might try to get to the zoo :) It still takes us a while to pack everything up and get out the door, but watch out world - we're learning how to become more mobile!