Wednesday, May 19, 2010

Halfway There... 6 Months Old :)

Today is Skylar's 6 month "birthday" so we're halfway to beating the odds of seeing her first year birthday celebration! It was a glorious day, but more on that later. Here's my little angel :) Her brown mullet disappeared a few months ago and this strawberry blond hair is growing fast! We'll see if it changes color... still got those big blue eyes though!

This past weekend was great - Kyle woke up early to meet his mom, Gramma, Aunt Wendy, and cousin Kimberly at the Flying Biscuit (yum!) for breakfast and then they brought me back a bacon, egg & cheese biscuit - so nice to have a good breakfast! They had just arrived in Atlanta and would be visiting for a few days and we were happy to have them. While they were here on Friday, the Manross family came by with the special stroller, battery hook up for the car, an extra suction machine for us, and other misc. supplies. What a HUGE blessing! The stroller is amazing and Skylar loves it! She seems really comfortable in it... I took her outside in it for the first time today - below is a picture...

We have her pretty far reclined and her pulse ox machine fits nicely on the foot rest... the canopy is detachable and the suction machine hangs on the back handle. We're still working on getting it all set up with the portable power supply and other machines, but this is a great start and a huge help.

Anyway, we had fun with family and friends and had a great start to the weekend. The rest of the weekend was spent with family over meals and movies and it was really nice. Kyle and I have decided to split up church services so that we don't have to take Skylar out (even though I am sure she enjoys seeing people and other people enjoy seeing her, it's just a pain and kind of risky without the van and power supplies). Kyle went to the first service with his family and then came back while I went to the second service. We had lunch with everyone after I got home and enjoyed the company.

Kyle's family went to Ikea and bought us a really nice shelf unit for the nursery to help us organize her machines and medical supplies (picture coming soon). Our chiropractor came over today and even noticed that it looked much more put together, lol. A friend of mine from high school came over today as well and brought lunch so we could catch up with each other (we hadn't seen each other in over a year!) and she got to meet Skylar. Again, we're so humbled and thankful for people's generosity and thoughtfulness. We've gotten some stuff in the mail from people we haven't even met in addition to gifts from friends and it just means so much words can not express. We're continually blown away by the movement of God's hands and feet through this time.

Skylar's been pretty fussy lately - I am pretty sure the tooth pains are hitting her. Last week, I thought I might have broken a rib or she might have a bad lung infection because she would cry every time right before her oxygen dropped or when I would move her. We took her to get a chest x-ray (which I think I mentioned last post) and all was good minus a little inflammation. She's been sticking her tongue out more and sucking on her bottom lip, which I think is her compensating from not being able to suck her thumb or chew on something. Skylar was actually able to get her right first finger close to her mouth though and she's almost able to chew on it... She's a cutie, even when she's fussy. She'll give a few smiles out here and there still, but you have to work for them!

As I have been watching more and more Disney/Pixar films with Skylar, I am amazed how many of them have such great messages. Kung Fu Panda has a line spoken by the wise old turtle, "Yesterday is history, tomorrow is a mystery, but today is a gift... that is why it is called the present." I think it is a great reminder to live every day one day at a time because none of us are guaranteed tomorrow. We've watched Cars, Finding Nemo, Monsters Inc., and a few others too :) She really enjoys them and usually watches the entire thing if she's not tired. I need to get Ratatouille, Over the Hedge, and some other more recent movies so I don't have all of the ones we have memorized in the next month or so. She's kind of past the Baby Einstein stage, but we still watch some of them occasionally.

Kyle and I just watched Evan Almighty recently through our netflix and it was pretty hilarious. It was also a good reminder on trusting God, knowing God doesn't always answer our prayers the way we want Him to, and knowing that God's plan ultimately is the best even if you can't understand it at the time.

I kind of feel like I am stuck just waiting right now. There is a lot of progress being made with SMA research, some testing has succeeded in mice trials and is now being tested on primates, but it could take a year or two for the FDA to approve clinical trials. I don't know that we have the time for that. Also, if there is a "cure" I am wondering if it will even work fully for Skylar since she has scar tissue already in her limbs and the effects and damage may not be reversible. What if we give her the "cure" and it doesn't work? Or it only works partly? Anyway, I am just waiting on God and not worrying about tomorrow, because it is a mystery and I could go nuts thinking about all the "what ifs" and such. A friend of mine passed on some song lyrics to me and although I am not crazy about the actual tune, I really loved the lyrics:

I'm waiting
I'm waiting on You, Lord
And I am hopeful
I'm waiting on You, Lord
Though it is painful
But patiently, I will wait

I will move ahead, bold and confident
Taking every step in obedience
While I'm waiting
I will serve You
While I'm waiting
I will worship
While I'm waiting
I will not faint
I'll be running the race
Even while I wait

I'm waiting
I'm waiting on You, Lord
And I am peaceful
I'm waiting on You, Lord
Though it's not easy
But faithfully, I will wait
Yes, I will wait

Thanks for reading - hope you enjoyed the new pictures :) Peace to you.


  1. Love the pics! Her hair is so funny. That EasyS stroller looks to be in almost new shape. wow that was a HUGE gift for your guys. I think they make a umbrella attachment too. That sun shade is the only thing crappy about the stroller. It makes so much noise to move around and it doesn't cover too well.
    don't forget to send me your address so we can ship out the vent bags to you.

  2. Happy 'Belated' 6 Month Birthday to Miss Skylar! Thanks for the update Ashley. The pictures are wonderful too! One of my friends asked about you guys the other day-just thought you'd like to know you have some prayers coming from MD too. :) Hugs to all. xoxo

  3. great pics of Skylar!! It was such a blessing to get to see ya'll and meet her. yeah for her new stroller!!


  4. Happy 6 month bday to Skylar!!! Love the sweet pictures. Skylar looks snug as a bug in that stroller. love the lyrics to that song...i'm the same way. not crazy about the tune, but we played it in Sunday school not too long ago as part of the study that day. it made me think of ya'll.

    DON'T get I have a little something for you all for Skylar's 6 month bday that MIGHT involve something to do with Ratatouille..=). I am home Mon-Wed of next week, so if your schedule works, I'll bring some food over and we can hang out!!

  5. Your ability to live each day as a blessing is an inspiration to me to not be fooled by worldly definitions of what constitutes happiness, joy, and a fulfilling life.