Today I finally heard back from Bailynn’s orthopedic surgeon who just looked at the pics I sent yesterday, today. His opinion is much like ours, “It looks awful, lets still wait and see. Surgery is the last thing we want.” Amen! Her back is not worse, by any means, but it also not significantly better. I will imbed photos again for those that are interested in seeing the progress. She is now on day 6 of antibiotics.
Bob and I are planning for the worst and hoping for the best. We dread the expenses of hotels, food, and multiple trips. We have done this. We have been here. I still have our bags packed and ready to go at any moment from last week. Our toiletry bag, I’m not lying, is always packed and ready because of Bailynn. We have an extra set of everything everyone needs. I have done this since Bailynn’s STAPH infection in her rods 7 years ago. This bag has been ready to go, reloaded and grown with our family for 7 years. I have been on high alert since then. Having a special needs child changes you. It makes you crazy and overly prepared for the worst, all the time! My brain goes to dark ugly places sometimes.
Travel alone is daunting right now seems to inflame the already angry area on her back. It is in just the wrong location and has tons of stress when she sits – anywhere! We have resolved to not travel at all with her until her back mends. This means no perusing at Target….this is tragic, trust me! Bailynn and the girls love our trips to Target! On-top of the sadness from missing out on our weekly trip to Target, Thursday is my Birthday. I have asked Bob to please get us some delicious food from Qdoba on his way home from work and Piece of Cake!!! Cause if we are going to be trapped at home, we should eat like kings. Don’t get me wrong, being trapped it home is 1000x’s better than being trapped at any hospital prison. I have most everything I need at home and all my favorite people (plus furry family). Being trapped in the hospital is a nightmare and wears on your psychological well being. Not only is its an inhumane form of entrapment, the food is horrible and 4x’s the cost of food on the outside. I swear being in a hospital you are in a perpetual state of awareness of your entrapment and I (maybe this is just me) always feel gross. Ok, this could be the little germaphobe in me that feels this way, but it takes days to get that grimy hospital feeling off.
We are hoping for the best and planning for the worst here.
In the mist of all this chaos in my life, Sunday my friend JoElle and I did a beautiful wedding shoot for our growing Event Design and Rental Business. Afterwards we ran by Los Bravos to grab our families some grub. It was a long maddening day in the heat running around. We made something truly out of nothing with the help of some really amazing other area wedding vendors. Well worth the effort and time we both sunk into it. At Los Bravos, while grabbing a quick drink, collecting our thoughts, and reviewing our pics, I broke down. Exhaustion typically takes me to my weakest moments.
You know what my biggest fear is – and I mean all the time! I think about it. What about when Bailynn does die? Not saying that she will today, tomorrow or this year, but what then? I’m the lady with 5 girls. People stare, people complement, people congratulate, apologize, shake their head, look in dismay and even say horribly mean things. I dread with all my soul the first time someone says, “look, she has 4 beautiful girls.” Instead of 5. My heart aches over this. Because no matter what, this will never be true. I will aways have 5. I share Bailynn on here so the world knows I have 5 girls. When she is whisked away to Heaven, I HAVE 5. I dread this moment. I dread her lose and the hole in our family. I pray I get to keep her for as long as I can. I love her beyond words and measure. Her life is so precious and valuable to us.
I want to thank everyone. I have had so many messages and phone calls filled with support and love. I looked at the stats on here as to how many people are clicking and reading about my crazy life. Over 500 people clicked the other day and read about Bailynn. 500! 500 people know her. I get to share a piece of her, me, and our family. She is important world. She has a voice world. Thanks for being part of this for me and with me. She will never be gone or forgotten! If she is shared and loved and remembered, she will exists in all the people’s hearts that read about our little girl and her battle with Tuberous Sclerosis. Share her! Share her story! Share my blog! Let the world meet Bailynn Hammonds and pray for her, because there are people here and all over that love her that have yet to meet her! I just know it!
I may go a few days with little or no update. We are in the wait game. Her medication will be complete on June 18th. After then, we watch her back and see if it swells up again. We are on the edge of our seats waiting to see what happens in our lives next. The next move is just around the corner, but completely out of view. Stay with me.
Here are the new images! DO NOT CLICK IF YOU DON’T WANT TO SEE!!!!!! WARNING WARNING!!!!! June 9, 2015 Photos of Back.