In 20 days our family will endure yet another surgery day with Bailynn. In 20 days, we will rise early, file into a hospital when the sun is still sleeping, the air is still cold, and our hearts are as prepared as they can become, to watch her be wheeled down a hallway with doubts and fears rising to a tide we will have to suppress. In 20 days we will be at the edge of what-happens-next with it just lurking on the other side. 20 days. Seems so sort. Seems so far away. The hotel is booked, the dog watching is in place. How many times have we awaited these dates? I sit and try to calculate in my head how many hallways I have watched, with Bob at my side, her be whisked down. Doubt and fear filling us to a breaking point. Here is what my brain remembers, but tries to forget:
- Oct 2000 – 1st back surgery on fatty lipoma removal, resulted in Aspiration, chemical pneumonia, and postponement of back surgery.
- Sept 2000 – fatty lipoma removed. She cries and cries for days. Our first taste of surgery.
- Sept 2001 – most of left-side of Brain removed. Results, massive seizure reduction, smiles for the first time, she can hold up her head for the first time, she learns to sit, she learns to play. It takes 9 years, but she learns to hold her own cup….it works.
- June 2002 – fatty lipoma removed again. Spinal cord de-tethering (stupid beast) Tears – from all of us.
- February 2003 – eye correction surgery on muscles that have been damaged due to massive medication use in attempts to control seizures. Eyes are straight, she cries blood and wails – my heart splits.
- Sept 2003 – VNS placement surgery. Helps control seizures without medications! Changes our lives! Makes her sing like Chewbacca when it is on. Amazing little (*cough* super expensive) machine! We wean her off her seizure medications. She has fewer seizures, but they will never truly go away.
- (It was summer, but not sure when) 2006 – Tendon release surgery on right foot (first signs of scoliosis). Serial casting to follow in attempt to correct how she holds her foot, doesn’t work.
- Oct 2007 – Rods placed to correct 76 degree curve to the right and 112 degree curve forward. Surgery goes extremely well, recovery is hard (very hard), but she grows 3″, she can sit in her wheelchair with no side supports, she can breath big deep breaths, her lungs and heart no longer are being crushed.
- June 2008 – Rods have slipped off spine need surgery to fix. Her head can’t lift, our hearts are affected and broken beyond repair (we think, it only gets worse from here)
- Fall BLUR 2008 – Infection…..multiple surgeries over a few days in an attempt to clear it out. PICC line for months – rods have too much infection! Her little bit of weight falls off of her. The rods escape her skin. These are some of the longest and scariest times in Bailynn’s life. WE watched her whittled away to practically nothing. WE watch her slip. She can’t sit, she has no will to play. WE feel little hope and little joy, but we try. WE have 4 other little lives we have to put on smiles for. WE have to continue to live.
- Fall 2008 – Rods removed. (STUPID STUPID BEASTS!!!)
- March 2009 – Rods back in (new shiny titanium ones).
- April 2011 – VNS replaced due to low battery supply.
- Oct 2011 – Infarction surgery on kidneys to try and stop angiomylipoma growths (doesn’t work! 88K and it doesn’t work!)
- August 2014 – Right hip is displaced, surgery to release tendons and attempt to slip it back in – nope, didn’t work.
- August 2015 – Tendon release surgery again on right foot.
- MARCH 7 2016- RODS WIN AGAIN! RODS WILL BE REMOVED…..
Unbelievable….how many times have I said she needs a zipper? More times than I’d like to recall. More times than my heart can handle. 20 days. How many hours have been consumed by hospitals and doctors? 16 years of non-stop medical drama.
I have had an onslaught of bad dreams lately. I really want them to look at Bai’s kidneys before this surgery. We may not have time. A tumor has started to reappear in her left leg’s thigh that had all but disappeared while she was on the Rapamune, for her Tuberous Sclerosis. It is back and it is big. What does that mean for everywhere else?! I try to not dwell on it, but I do. Pushing those thoughts aside….next!
WE ARE SEARCHING FOR THIS TOY!
We lovingly call her SYLVIA
SHE IS A 2000 FISHER-PRICE SOFT RATTLE
HER HEAD RATTLES AND THE BLUE HANDLE AT BOTTOM MAKES CRUNCHY NOISE!
SHE IS BAILYNN’S MOST FAVORITE TOY!
(This is how she use to look. She looks old and falling apart now.)
I often search EBAY “rattle lots” and resale-baby shops online, I HAVE NEVER FOUND HER. It is as if she is completely unique and we have the only one, this simply can’t be! HELP US FIND SYLIVA! Bai loves her and she is disintegrating!!! She is 16 years old! She is about 6″ tall.
If you have leads on another SYLVIA’S whereabouts, please EMAIL US ASAP!
Still trying to forget my bad thoughts and feelings…so NEXT!!
The twins turned 8 last Monday, February 8, 2008! Can you believe it!? They are getting so big! They wanted to go to the Disney Store and Chuy’s for their birthday, so we made a trip to Opry Mills! It was a great family outing (despite the looming snow forecast). We had a great time and Bai did fabulously, even after throwing up all weekend and continuing this same pattern all week. She is finally holding food down and more content. We got some much needed respite from our day to day life in the few hours we spent celebrating our two smallest ladies.
Final thoughts today.
I am able to, most of the time, find or get notifications of people posting about me. Ok, this is not stalky (sort-a-stalky!), I promise, I just have it set up through my wordpress and it tells me where links and clicks are coming from (an internet stalkers dream! haha). Such as, most say “Facebook” or “twitter” some even come from our “sketch club app” or “caring bridge.” So, when one I didn’t recognize blipped up, I clicked to see what it was. Here is the link. RAMBLINGS FROM THE HC. Proof that Bailynn’s story and life it bigger than me. That my journey and sharing is reaching others in ways I never imaged. My wordpress even tells me what countries my blog is reaching. I have many clicks from Germany, Norway, England (UK), Netherlands, Indonesia, Nigeria, many from the Czech Republic (yes I see my Czech families!), Ukraine, Canada and EVEN Spain! The little girl they thought so small of, how big her reach is! How big her story is! How big her life has become! Praise God for her and her moments here with us. Praise God for her lessons and her worth! The little fighter that moved all she reached with her story and her will to live. Bailynn.
For the journey.