So when I had Skylar 17 months ago, my mom gave us a pink Christmas cactus to celebrate the November birth. Around Skylar's one year birthday, there was one pink bloom, which I thought was appropriate since she was one year old. I wanted to share a picture of the cactus now :)
So to balance my past posts, I wanted this one to be full of pictures and more light and fun! I don't think I've shared Skylar's play time on the iPad with you yet... One of our best friends from college bought Skylar an iPad as a gift a while back and it's been amazing! Since Skylar doesn't have the muscle to move a whole lot, she is not able to play with normal toys. The iPad has made a huge difference because with the lightest touch of her fingertips, she is able to see a cause and effect. She is actually able to do something on her own and see it happen!
With a tap of her fingers, she can blow up balloons, create bubbles and pop them, play a piano, learn her alphabet and numbers, etc. We're always looking for new apps that would be fun for her. I actually downloaded Rock Band for the iPad (we don't have the Wii so the app is the next best thing) and Skylar is actually pretty good on the drums with my help :) Nurse Natalie and I have a good time playing with her.
Some good updates to share - Nurse Natalie is back and I am feeling better too! Skylar's belly issues seem to be almost gone and we're still working on getting in to see the pulmonologist. The good news is that I've found a home health care company able to supply the Trilogy Bi-pap for us and insurance should cover it. I'll keep you posted.
We've also been extremely blessed with three women who have stepped up and are consistently willing to pump for Skylar. That has been such a huge answer to prayer and we are very thankful for them (pumping is not a fun task).
We've also been very humbled with people willing to help our family in addition to the meals and breast milk donations. The 10K team for Skylar was started by a close friend and I just talked with an old friend from high school who wants to have a Chick-fil-a night for Skylar where 10% goes back to our family from that location (more details to come soon). A church in Dunwoody has been so wonderful with donating to us as well. We've also seen on our facebook fan page where companies have been finding out about us and voluntarily donating things in the event that we're chosen for the Extreme Makeover! It's so neat to see the word about our family and SMA spreading across the country. If nothing else, I hope we're chosen so that more awareness can be brought to this horrific disease and more research money can be raised.
That's about it :) Peace to you throughout the Holy week, Good Friday and Easter Sunday! I hope you are able to enjoy the weekend and spend quality time with the people who mean the most to you!!!