Sunday, March 6, 2011

Major Updates!

Well, don't get too excited because I have no news to report on the shutterfly contest or extreme makeover, but I still have some major updates! Thank you to all who have already "liked" our "ABC Extreme Makeover - Pick The Jones Family" fan page and written comments on how you would be willing to get involved. If you haven't done so yet and you're on facebook, make sure you like our fan page and write if you'd be willing to help in some way... the link is to the right!

This is Skylar's new knit hat made by a good friend of ours. Sometimes I feel like I get a glimpse of what Skylar might look like as a young lady - this was one of those moments. Simply stunning.

Okay, on to the updates :)

First off - we had some family come into town all the way from Maryland to visit/meet Skylar which was very exciting! Uncle Tad had been here before with our cousins, but this was Aunt Kim's first time meeting Skylar and it was such a treat! We were so happy to have them and enjoyed some great meals together. We didn't have Skylar's room quite put together by then and they really wanted to buy her bedding for us. I had already picked it out, but the Target near us only had the picture of what I wanted - not the actual quilt for her big girl bed. They didn't have it online either. Uncle Tad and Aunt Kim found it in the suburbs along with some other super cute things and surprised us with some awesome goodies!!!

Not only did they find the bedding, but they found a matching rug and the canvas print to match that we had seen in the store picture. I was so excited to have her room finally come together. We also got some additional fun pillows for her bed and it's just the cutest little girl's room now :) We have some ideas of what we want to do with the walls in her room, but I am not sure if we'll get around to it or not... Reese has completely adopted the rug in Skylar's room as his own and could lay there forever I think.

Second big update - we're letting go of Hospice for now. Skylar has been so stable the past few months that we don't really feel like we need their services (especially since Nurse Natalie is here). We love everyone on Hospice Atlanta's pediatric team and will miss them for now, but it's nice that we don't need them. Now it's just a matter of getting insurance stuff taken care of so we don't have to switch out all of our equipment again (a royal pain). I'm not too sure why we don't have a case manager still but we're working on it. As long as we get the supplies we need on a regular basis still, we should be okay!

Third - we're in the planning of another family outing! We ordered a battery and inverter for her stroller and hope to test it out this week or next with walks around the neighborhood before we go far from home. The aquarium was so much fun that we are hoping to do it again. I am not sure if we can get to the aquarium again, but we're working on a trip to the zoo since the weather is starting to warm up! We even got her a dvd about zoo animals so she could learn about them before our trip :) A wonderful woman from Children's in Atlanta is helping us get a special visit worked out and she's also going to help me try to get some awareness for SMA - such a blessing!

Most of you know that I, along with three other awesome ladies, started the GA Chapter of Families of SMA last fall. We are excited to announce that we're planning our first big fundraiser - a Walk-n-Roll event for early Summer (hopefully June). I wanted to give you a heads up in case you would like to come out and walk (and/or roll a stroller or wheelchair) or be a sponsor or donate money - more details will be coming soon with the exact date, location, etc. so stay tuned.

Health Updates - we've had some random health issues come up between me and Kyle. Last month, my extremities would get wicked cold and my toes would turn purple and my fingers would turn white (Raynaud's syndrome). My toes would actually break out in hives due to an allergic reaction to the cold - completely random! In addition to the circulation issues, my heart was fluttering and I was getting concerned that something was wrong with my heart. After some blood work, I found out that my thyroid is hyperactive and all of these things could be related. Still working on getting that resolved, but at least my heart should be okay. The weirdest part about it all was my blood work in November showed everything to be completely normal so this all was very random. A few months ago, I pulled some tendons in my wrist and those are not healing because I can't give them the rest they need caring for Skylar. Also, Kyle found out that a nerve in his tooth is dying even though his tooth doesn't have a cavity and he'll have to get a root canal. This may seem trivial, but for us, it's annoying and one more thing to add to our plate with more doctors appointments and things to think about. However, I will say, we're extremely thankful that we've been able to stay healthy from illnesses and not come down with anything that is contagious!!!

Skylar's teeth are still fighting their way through. I actually can feel the edges of her four front teeth and can feel a molar trying to poke through, but nothing visible to the eye yet... Natalie and I really thought we would've seen them by now, but now we're guessing by the end of March! Sometimes she's really uncomfortable and I can't tell if it is because of her teeth or something else. With SMA kiddos, it could be a number of things. Lately though, I am guessing it's her teeth because when she's off bi-pap, I can give her a gum massage (sometimes for over an hour) and she's happy as a clam.

Here is a picture of Skylar with her "sister" Anna. They've been sharing breast milk for months and months now. I definitely think the breast milk has been a huge part of Skylar doing as well as she has been and am so grateful for this family and their willingness to share. For Christmas, I got Anna a matching sleep sack so they could be twins for a day. They're the cutest girls ever!

One last thing - Skylar has moved up to size 3 diapers!!! I don't know if any of you use to order stuff, but we are going to start ordering all of our diapers and formula from them! Not only do they give you free shipping on orders of $49 or more (easy to do) but they deliver in two days and there's no tax! The Alimentum formula that we use for Skylar is pretty expensive and so far, has the best deal on it. If you're ordering diapers for the first time, you can use our code SKYLAR10 to get $10 off. If you're ordering for the first time period, you can usually save an additional $10 with promo codes.

This week I have some family coming into town - my aunt and uncle and 92 year old grandma! She's awesome - you would seriously guess she was in her 60s... I think the secret is doughnuts and miller lite, hahaha. Anyway, they were all here when we thought we were going to lose Skylar over labor day (we actually had to ask them all to leave through our tears), so I am super excited they have a chance to come back to visit and meet Skylar again when she's doing well and we're all in good spirits. I'll update you next post on our visit together.

I hope you all have enjoyed the warmer weather. We're excited for spring. I haven't seen the sun in over 1.5 years and got my first sunburn Thursday when I sat outside on our back patio for lunch with my mother-in-law. Pretty hilarious farmer's tan... I should know better. Now we're back to winter weather, but it was a nice teaser to remind us that Spring is coming soon!

That's all for now. Peace.


  1. Such a good update! Love the photos of Skylar - she's so beautiful!!!!! AND I love her new room additions. So cute!!! Send more info on the walk and roll - I'm in if the dates work!! Let me know if you need me to man a registration table, whatever!!!!

  2. What a wonderful update Ashley! Mom told me she found some super cute things for Skylar's big girl room so it's great to finally see pictures of all those goodies! I hope you continue to have good days together. And I hope you are able to have another family outing! Big hugs and love to all!

    <3 Amanda

  3. I am very interested in the walk! My husband and I started doing 5k last year. Skylar looks so beautiful in the purple hat. Great update!

  4. Oh my goodness! i'm in love with her new bedroom. Love to all of you!

  5. This is a great update on Skylar, thanks for keeping me posted now that I don't get to see ya'll (or Kyle) anymore. Think of you often and you're always in my prayers. Sending lots of love XOXO