Blog #5: A Milestone and a Reality Check!
Yesterday really snuck up on me. The last week or so has been very busy and full of ups and a couple downs. Thankfully more way more ups than downs! The holidays has been a welcome distraction from the stress of Kayla's day to day life. Then yesterday happened. January 4, 2017! Kayla's first birthday!
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| Kayla Louise Breadon Born on January 4, 2016 |
What should be a joyous milestone in every childs life just snuck up on me, on my whole family! January 4 is Kayla's birthday, and it's her FIRST one at that. I was feeling upset at myself for realizing the significance on Facebook of all places! Then my sister Catie posted a picture from her birthday morning breakfast that broke my heart. I've been struggling and in tears ever since.
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| Yesterday, January 4, 2017 Kayla Louise turned ONE YEAR OLD! |
Its an adorable photo, I know, All photos of Kayla are adorable! And like this one, most photos of Kayla are a smiling, happy, content little girl. And that is real.. she is a happy, healthy little sweetheart and I am so grateful for her health and happiness. But...lets be honest, lets have a reality check. She looks healthy-yes, content?-maybe, happy? probably, after all she is eating a Pop Tart for breakfast! But something in her expression in the photo above, on her first birthday breakfast, has hit me really hard. It is a heartbreaking reality check.
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| Kayla stealing soda from Mommy. As you can see from her expression in this photo, she KNOWS she is not allowed soda! |
Sometimes we can get a "good angle" of Kayla (like the photo above). Some days her malformation is not as swollen as other days. Sometimes it doesn't push down and completely block her vision, only maybe 90% blocked on some days! Yesterday, on what should have been a celebration filled with cake and cousins and laughter and taking first steps, I was just struck by the reality that this has been the first year of her life. She has been fighting this every. second. of. every. day. since the moment she was born. And yesterday it seemed from the photo that she was not winning the battle. Maybe it was the angle, maybe she had just been woken up, maybe she doesn't like pop tarts... or maybe... This is Kayla's reality everyday.
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| Smiley, happy, goofy.... yes I am talking about Carter, Kayla's brother! |
Thankfully, with the love of friends and family and the gift of the Doctors available to her, we have a plan, an excellent plan. The best plan we believe we can give Kayla to help her live a normal life.
The success of the fund and the outpouring of support has been comforting these past few weeks. We will keep that open and humbly ask that you continue to share. We have been connecting via social media with many people of all ages who have been patients of Dr. Waner and others with experience with lymphatic and vascular malformation. They have shared stories and results. Very few surgical stories are a 'one and out' story. None that I have found, actually. Some have needed ongoing treatments and/or constructive surgeries. The good news is ALL have had immediate postive results from the surgery itself, maybe not perfect solution to the entire malformation, but immediate relief has been achieved.
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| Here are two nice people I have connected with. Both have been treated by Dr. Waner. Both with great results. |
The City of Florence employees (Police, Fire, etc) have reached out to donate their own sick and vacation time to Cassie. Unfortunately, for now, the request was rejected because it is not Cassie who is ill. No time for that heartache right now.... Sean's paid sick leave was also rejected for the same reason. Again, water under the bridge till a later day. Both are able to take the time needed to be with Kayla, but unpaid. The gift of friends and family support means they will just move on and focus on Kayla. But we will keep the fund open until we are out of the woods. Please share her story.
Its been a very emotional few weeks.
January 18... please come soon.
The Courageous Kayla's GoFundMe Link:
