Sunday, May 30, 2010

Many New Things! And Pictures!

So Skylar was quite the little flirt in the hospital during our last visit a month ago... there was a pulmonologist on call who would come visit us daily and Skylar's face would just light up when he came in the room - he was tall, brown hair, big smile... She would just smile back at him all the time - it was quite hilarious. Anyway, I say this because she hasn't done that ever before or since then, until now. Our good friend Thomas Clay came to visit us this past weekend - he's tall, brown hair, blue eyes, nice smile and all the girls love him... including Skylar! She could not stop smiling at him and this was HUGE because she had been fussy, consistent elevated heart rate, etc. for two days and really made you work for smiles. Kyle and I were lucky to get one a day from her and then all of a sudden, she's just all smiles for Thomas. He officially asked Skylar to be his girlfriend so all you other women out there - just know that Thomas is taken now, lol! Here's a picture of Skylar gazing at Thomas from across the couch :) I didn't get the smile captured, but know that it was adorable! We had a fun week and weekend with friends - old and new. It was great to see everyone!!!

So to catch you up on some things... We finally ordered the waterway baby neck ring so that Skylar could hopefully enjoy her bath time more. Ever since she grew out of her infant tub, our bath options have been extremely limited. Since she can't support her head at all, it's been challenging to figure out a way to keep her above water and still wash her and play with her. The inflatable neck ring was our last hope before I invented something myself... Luckily, it worked! Skylar's neck is a little small for it, so we added a washcloth in front to help with chin support that doesn't cut off her airway, but she seems to be getting used to it. I know it looks like a cast or something, but it's actually quite nice. We've used it twice now and the second time in the tub, she moved her leg by herself (something she hadn't done for at least two months because her thighs have gotten some fat on them and are much heavier now - I think she's about 11.5 lbs now...). We're hoping that as she gets used to it, she'll feel more comfortable moving and may even gain some control back in her legs. We'll see.

We've been watching movies during the day to keep Skylar entertained. Not that I don't love trying to keep her attention, but I think after all day with mommy, she gets a little bored :) So with new additions like Ratatouille and TinkerBell (thank you friends!!!), we're staying entertained! Kyle, however, has still not given into the animated movies... he has watched The Patriot with Skylar (thankfully she fell asleep at the beginning) and has viewed films like Vitus (a foreign film) and Avatar (at least it has bright colors despite the darker parts) with her as well. Don't get me wrong, all great movies, but Skylar's still a little young, lol. I will say he and Skylar watched Robin Hood, the cartoon, because it's his all time favorite, but we're still working on the others, hahaha. Here she is asleep on the couch afterward with a fuzzy head...

We're having a fundraiser June 19th to help raise money to go towards getting a van to transport Skylar and all of her equipment. It would actually be a fun Father's Day activity if you're still looking for something to do... Because of my love of photography, and the amazing talents and generosity of a great photographer named Tessa, ( we're going to do a photo shoot fundraiser. There will be more information on the "Help Fight" page of Skylar's website and an event on facebook is coming, but basically you can pay a mini session fee to get 10-15 pictures of your family or friends and a 5x7 printed picture will be included with the fee. The pictures will be available to order online if you want more or to share with family and friends. All session fees and profit from ordering will go straight back to our family. Also, Tessa has graciously committed to donating a percentage of her profits for the month of June back to us as well so if you can't make it out June 19th and still want pictures, give her a call! She's coming to our house tomorrow to do pictures of our family - I'll put those up soon, but until then, you can have a picture of Skylar with her sweaty head mohawk :)

She's such an amazing little girl and does so well putting up with me!!! Even when I have to suction her, use the cough assist (which is pretty much like the scream extractor in Monsters, Inc.), and other torturous things, she doesn't even shed a tear anymore... She's my little champ. And then of course I do crazy things like give her mohawks :) What a trooper! At least she doesn't have to put up with scratchy lace and uncomfortable clothes... I do the best I can.

We have two check-ups this week - GI and Pulmonology. As I mentioned before, Skylar's heart rate has been a little elevated lately, but no fever or anything yet. Her mucous has been a little cloudy so we're wondering if she's fighting off an infection of some sort of if it's just the teething thing. If you could pray for her body to stay healthy, that would be much appreciated. So far, so good. We bumped up her bi-pap settings too so she's trying to adjust to the higher pressure of air at night which has been a little hard for her. I don't think she slept much at all last night (the first night on her most recent increase in a series of three) but she adjusted well to the previous ones so we're hoping tonight will be a better night. Oh shoot, I forgot to take a picture of the new additions in the nursery, but I'll just add that to my next post if I can remember!

One last thing to mention - I know it's a long post (at least there are pictures :) but a lot of people have asked lately... If you want to make a monetary donation to our family, you can do so through our church (and it can be tax-deductible) by sending it to Trinity Anglican Mission with an extra note that it is going to our family in addition to putting it in the memo line. Check the "help fight" page of Skylar's site for full details. That's all folks... Thanks for reading! I'll be updating again soon with our family pictures and more fundraiser details :) Have a great week!!!


  1. Hey Ashley and Kyle,
    Meredith and I found your website/blog this morning. I wept as I read through it. I'm so encouraged by reading about how God is working in yalls lives, and I love reading about your sweet little girl! I will definitely be praying for your family, and I look forward to more updates.

  2. Ashley,
    I came across your blog today when looking at the new pictures of your beautiful family. Skylar is an amazing blessing, and your words and walk are so encouraging. As someone who works with children with special needs and their families on a daily basis, I am inspired by your willingness to share her story and your journey to promote awareness for SMA. I will continue to pray for strength for you, Kyle, and your precious little one. God has a perfect purpose for her life! ~Kristen

  3. Jeez... the ladies really do love Thomas from birth!!!
    Loved reading the update and watching the video! I can't wait to see you all in a few weeks!! But now I feel this overwhelming competitive pressure to get Skylar to smile at me! Kyle needs to pray for another smile for Uncle Walt! haha

  4. Yall make such a beautiful family, we love you all and are praying for you!