May 11 was Vivi's big surgery. The day they sliced open her back from C2 down to L3, they cut through all her muscle, opened up her vertebrae, cut through her spinal cord and took out a massive tumor that we had seen on an MRI on April 18th, 2017 (the WORST day of my life). They put sensors all over my baby during the surgery to make sure they didn't lose any function in her body during surgery.
At the end of surgery, we knew it wasn't cancer and she didn't lose any mobility during surgery. See?? BEST DAY EVER. Recovery from this surgery hasn't been easy but I can't imagine watching my baby struggle to move again all while knowing we still had to battle for her life. I have said it probably 8434587693 times, I'm so glad the worst part of all of this was the recovery from surgery. Our outlook is not grim for our girl. She's a miracle. Vivian Leigh is my miracle child.
45 days in the hospital was hard. HARD. HARD. HARD. Some days were harder than others. My family was broken for a month and a half. Vivian was in a bad mood for a month and a half straight and we had to be within 10 feet of that moody child for a month and a half straight. And try to make her do things like eat/drink when nothing tastes good.. walk when it hurts.. use her right arm when it had no movement.. go under anesthesia for many, MANY tests.. wear a brace that rubbed her wound wide open.. multiple lab draws and IV sticks.. Lordy.. it was hard. It was exhausting. She handled things the best way a 2 year old who has no control over her body could.
Once they finally discharged my girl home, who could barely walk at the time without a ton of assistance and wasn't eating at all.. she progressed in strides. Within a week, she was walking well with a walker. Within a month, she was walking decent without the walk. And now? 6 weeks after discharge, she is pretty much running around eating like a two year old (which.. isn't super well, but we supplement with pediasure to make sure she is getting strong..)
Currently, we are working on the stairs with her. She does decent when she leads with her right. So, right now we are focused on that to make sure she can safely go up and down the stairs. However, if she leads with her left foot.. she is very unbalanced and unsafe by herself. It's strange because her right leg was the weaker one, but now it's her left. She'll get there. Her feet need a little work. It's awesome that she can walk, dance, shake it, etc. But, eventually, the way she walks, is going to start to wear down parts of her body. So while I'm extremely over the moon with our progress, I know this kid is going to require therapy for awhile and I'm going to have to really educate myself on the mechanics of her body. What we do now really will prevent future discomfort and surgeries.
She continues to have her back brace on. She will until at least September 15th. It doesn't bother her at all. Vivi actually asks to put it on and says "MOM! I love my brace!". It would be awful if she didn't. Lucky us!
Last week, we had a scare. I felt her neck and there was a bulge. She had no pain, no tingling.. but in that moment.. I almost lost it (okay, I did.. right, Mom??). The brace is supposed to keep her aligned and hopefully prevent her from having further surgery. And when I felt that bulge, I just instantly felt like our progress was for nothing. It felt defeating.
However, I made an appointment and was finally able to SEE the x-rays side to side. The one from in the hospital and the most recent one and.. she looks SUPER aligned. She looks AWESOME! I'm pumped. Dr. Mangano was out of town, so I saw one of the nurse practitioners and she thinks the bulge we are feeling is the bone fragments that he reinforced her spine with. The bulge is likely from that bone hardening and he had really reinforced that particular area because that was the area most likely to become unstable. Makes total sense. I really REALLY needed that. I really needed to see the xray to see tangible evidence that we are doing the right things.
There was a tiny area that concerned myself (and the nurse practitioner). There was a translucent area on her spine that was not talked about by the radiologist and the NP said she relies a lot on the radiologist. However, it was also on the previous xray.. which I know was seen by Dr. Mangano.. so if it was concerning, he would've said something. And it looks the exact same from xray to xray.. so while it made me pucker a little.. I feel okay about it.
Overall, we are doing awesome. Bryn and Vivian are the absolute best buddies. I'm so proud of how well Bryn treats her sister. Aubrey is officially at a stage where I call her a "monster" pretty frequently. Life is hard, but not much harder than it would be having 3 girls 3 and under.. I think our life is just supposed to be hard at this point. Haha! We just have a tad more on our plate than usual.
Just to be extra real for a second, I am TOTALLY over the summer. I've always loved Fall, but this year I'm extra looking forward to it. These nice days get me in a funk. Days like today.. beautiful, sunny days.. I should have my kids at the pool. Or splash pad. Or zoo. We should be doing all the fun things summer has to offer. We should've been in Charleston enjoying the summer week with our family. But it's just too hard right now. And I can't stand the thought of Vivian getting an infection in her back. This summer bums me out. So, I'm over it. I think the Fall will be better because I won't worry about Vivi's back so much. The outdoor activities are less physical. And Vivian won't be so hot in her brace. It'll just be.. better. And if it's not better, feel free to bring me a pumpkin spice latte daily and a couple comfy sweatshirts.. and I might pout a little less. Haha!
But I do need to be thankful everything happened when it did. My kids have no idea what their missing out on and are totally happy staying at home. In a couple years, Vivian and Bryn would know the summer is all about parks and pools.
Shew! I feel lighter! Pout session done. Back to being thankful for all we've been through and how my girl came out on top. I'm so proud of that little stubborn thing.
Look how awesome her back looks now!!!!
XoXo
The Millers
