Birthday Celebrations!

HAPPY THANKSGIVING!
I hope you all are enjoying good food with family and/or friends and have a holiday season full of love and laughter!

I am super thankful our little girl is still around to celebrate and that I have a loving husband to go through this with as we grow together. We are so grateful for all of the support we have - an amazing family and network of friends! Thanks!!!

Sorry for the delay with this post - I was trying to get pictures together and had a few other set backs, but here is the birthday update :)

On Skylar's Birthday, which was Friday, November 19th, I was so excited that we were able to celebrate together! Skylar woke up in a good mood, full of smiles (I think she knew it was her birthday :) and I was full of joy. I got to see my little girl turn 1!!!


Skylar had a great day! Our CNA came to help me bathe her, we watched all of her favorite movies and she had a really good nap. We were going to take family portraits, but our photographer had to cancel because she was feeling a little under the weather and we didn't want to risk it. Hopefully we can reschedule soon. I think I felt every emotion possible - anger (thank you Reese), excitement, disappointment (people having to cancel coming to the party because of illness), thankfulness (people not coming to spread their germs to us), love, joy, peace, anxious/worry (party and germ exposure) and sadness/suffering...

When Skylar was napping, I decided to get online and check facebook only to be shocked with the news that a 2-year old little boy named Jonas with SMA type 1 had passed away the night before. He had been fighting with a cold for a week and wasn't doing well, but I just didn't expect to see that news. Please keep the Coleman family in your prayers as they grieve the loss of their son and continue to raise their new baby girl who also has SMA type 1. I was so mixed with emotions - extreme sadness for this family and a reality check for us, but I still wanted to be happy to celebrate Skylar's birthday. I had a good cry and then decided not to think about it much more so I could be happy for Skylar.

I was telling a few people that to live "normally" and function daily, I almost have to live in denial that my daughter is going to die soon. If I focused on that, I would be depressed and a constant mess. I have to force myself to let that go, knowing I will have plenty of time to go there when she's gone. I choose to celebrate every day with her while she's here. So when I hear about another SMA child passing away, it's a harsh reality check and sends me into the grieving process, not only for that family's loss, but knowing that will be me someday as well.

Anyway, I was able to get through it because my wonderful husband went out and bought lots of goodies including stuff to make a cake and was in the kitchen baking when I learned about Jonas. He came and gave me a hug and then I joined him in the kitchen to continue with the birthday celebrations. Once her cake was done, we took it into her room to show her. We want to recognize all of our friends who make awesome cakes - it's a lot harder than it looks, but Daddy did a good job!

I gave Skylar got a nice gum massage to help those teeth break through and we hung out as a family just enjoying the evening. I stayed up until the wee hours of the morning to put together a video of Skylar over the past year, but every program I tried to use had different issues and I decided to go to bed frustrated and grumpy with nothing to show. Oh well - hopefully I can get something together for the blog soon.

Saturday was a big day. We got up super early (Kyle woke me up much earlier than my alarm was set for) but it backfired on him because then I took my sweet time thinking I had extra time to spare, lol. So we were running late as usual and ended up running out the door to go to the party without my camera! Luckily, a few people brought cameras and are going to send me pictures so stay tuned for actual party pics. We arrived right at 11:30 and it was everything I imagined in my head! I had given my moms all the responsibilities and they did a great job!!! My stepmom was in charge of the cake/cupcake tower which was complete with little white orchids and butterflies, and my mom & mom-in-law did the balloons and decorations - AMAZING! Thanks moms - couldn't have done it without you!

Many people at the party were surprised how long and "big" she's gotten so I wanted to post a full length picture for you to see since I realized I typically do close ups of her face. Here's her special birthday dress I had so much fun buying for her :)

We were sad a lot of people canceled last minute due to not feeling well or kids being sick, but we were grateful that the germs stayed home and Skylar seems to be feeling just fine :) A lot of people did make it to the party, including the doctor that delivered Skylar!!! It was so neat to have people from all walks of our lives come out and celebrate Skylar - high school and college friends, SMA buddies, church friends, medical professionals, family friends, etc. Thank you for supporting us and for coming out to celebrate! Even though Skylar was a party pooper and slept through most of her party, I think she enjoyed the change of scenery! She has already enjoyed a lot of her gifts too :) I did not expect so many gifts since we did a potluck, but we got a ton of fun books, puppets, toys, clothes, gift cards and more! THANK YOU!!! Even the wrapping/packaging was amazing! Here are all the cute bags we received -


We were all worn out and Sunday we slept in and had a fabulous day of rest. We brought all of the balloons from the party home and I let them go in her room so they filled the ceiling. The next day, the latex balloons had already fallen to the floor, but the fun shaped balloons are still going strong - Check it out!


We also got to interview a nurse who is now going to be helping me. Tuesday we filled out all of the paperwork for our in-home nursing and it's complete! We have a nurse coming to help me 3 days a week now from 8-4 :) YAY! Tuesday was our first day and it was awesome!!! She cleans out the equipment before she leaves and is around all day to help me bathe her, move her, watch her while I go to the bathroom or take the dog out, etc. This is going to be a huge help, I can tell already! I don't typically ask for specific prayer requests on the blog, but here's one if you're up for it. Our nurse, Natalie, is super qualified medically and is really nice so we hope to keep her around, but she has 4 kids at home (ages 2-12) which is a huge potential to carry illness. Can you please pray that her family stays well and that she would not bring any germs into our house?

More pictures to come!!! Stay tuned for her Thanksgiving dress and birthday party pics!