From Her Back to Her Toes

Yesterday the girls and I traveled to Indy for a follow up apointment with Dr. D, Bai’s orthopedic surgeon. I am happy to report that her back seems to have fully recovered from all its summer drama. I was told that once we left Indy in June with Bai’s back blowing up like a balloon and after the multitudes of photographs and emails I kept shooting Dr. D, he honestly believed that Bai would have to have her rods removed. He said any other child would have had a glint of metal shining through the open wound. He was so kind in telling me how he honestly just couldn’t believe how amazing Bai’s back looked (despite still being super model skinny and having protrusion, but normal protrusion of the rods). Her skin looks as if nothing happened this summer. It looks as if she didn’t spend week after week laying in her bed. It looks as if Bob and I didn’t worry for countless hours and address her every need for comfort and support. It is a ghost of an event and Dr. D says it “should have” been more. She “should have” landed on his operating table with a chisel and a nightmare unfolding, but it didn’t. I know some people couldn’t endure weeks of entrapment in their own home. I know people who can barely stay at home for one day, let alone over 6 weeks. I know we did something for her that had to be done and today we can proudly say that she is ok, her back healed because of our due diligence and sacrifice. It “shouldn’t have”.
So back is good! Yay!
Her hip is still displaced. Dr. D says it looks exactly as it did last summer when we had the tendons released around it in hopes of it slipping back into place – nope. It is in the exact bone-on-bone location. How does she not scream in agony daily? I don’t know. I think she knows nothing but pain. Her life is pain.
Here is were the trip gets a little more interesting. For many years we have had issues with Bailynn’s right foot. Ok, so she had a stroke – so she had the left side of her brain removed. We know these things! We know the right side of her body simply doesn’t function or grow like the left, but her foot in particular has grown and curled in ways that make it a challenge to place a shoe on her foot. Many years ago we attempted to address the situation. Bailynn, with a previous Orthopedic surgeon, had an Achilles tendon release surgery, serial casting on her foot, in a variant of angles, and long term dafo leg braces (which she hated, fought with all her might and we subsequently stopped using due to her building up her bad muscles again -only Bai).
Cold is coming – real shoe weather is on its way and I HATE IT! I hate having to squish and shove her curled up little foot into shoes. I hate cold weather – I think this has something to do with it. I hadn’t brought up my concerns. Bai wore Chuck Taylor Converse for a few hours on Saturday and ended up with blister marks on the top of her foot. This can’t continue. The back is good – the hip is what it is – so i bring up the foot. Dr. D has never really looked at her foot. We have always had larger fish to fry. He took one look at my girls foot and said, “I didn’t do this” Well, no. Then he explains how it was not preformed properly and how Bailynn’s top tendon on her foot should have been released at the same time to set in the casting as well. With years of having no good back tendon, her front one has overcompensated resulting in abnormal bone growth, her foot being significantly smaller than the other one and her toes being unable to extend properly. Basically I have been struggling to place her foot flat in shoes when she simply can not do it. WHAT!!!??? How does this stuff happen to her all the time. Does it not seem like a never ending war with weird issues brought about by other issues!? Bai is having surgery on her foot next Wednesday! September 23rd at 11:00am Indy time. Another trip to Indy. She will be required to wear a cast on her foot for a number of weeks (well at least pool season is over), but if all goes as planned, her toes will be able to lay flatter – the bone growth can never be altered or repaired. Never. A mistake done years ago and sadly ignored due to bigger pressing problems. It makes me feel ill. It riddles me with guilt. Why didn’t I say something sooner? No Deloreans.. No Deloreans.
What a week our family has had.
On top of this foot news, our little precious dog died Friday September 11th. Our Bess, whom we had had for nearly 14 years, had had breast cancer for a number of years and it finally swallowed her up. Our hearts are broken. This spunky jack Russell was bought for Bai just two months after her brain surgery (which the anniversary is this Sunday 9/20, 14 years!) and they had been the best of buddies ever since. Bess was Bai’s dog. They loved to snuggle and Bailynn loved to pet her. Bai cried when I told her Bess had died. My heart split open again, because though I say she was Bai’s dog – it is a lie – she was OUR dog. She made our home a little brighter and a lot more furry. She left behind her 3 living children and her husband (yes, we still have 4 dogs). Her husband, Charlie, has taken it the hardest. He has eaten so little and shakes. We finally found that feeding him out of Bess’ bowl makes him eat better, he loved her so much. Heart splitting more… Bess is better off. She fought a good fight. We teased that she just wanted to have tumors like Bailynn – they were best buddies, but our family will miss her deeply.

So that’s the update. Please continue to pray for Miss! I’ll let everyone know how the surgery goes next Wednesday. Don’t forget that the BOOSTER T-shirt Campaign only runs through October 2nd featuring original artwork by Me! 🙂 All the $ raised will go to pay off Bailynn current medical loans and now this surgery expense. We thank everyone for their love and support!

Here is what one of the T-shirt designs looks like! It comes in grey and hot pink. There is a man’s version too. The hot pink and Navy go down to youth sizes.