Thursday, July 23, 2015

9 months home

I have to be honest. I did NOT want to update the blog today. So let's just get down to it:
Neena rebroke her leg. Same spot, same injury,.....for the 3rd time in 9 months! 
I wasn't even there when it happened! (Bad mom of the year!)
On July 13th, My dad had been graciously watching the kids for me while vivi and I had a little girl time at the beach before she starts middle school. I saw a missed call and voicemail from my mom. The voicemail sounded somber but not hysterical and said "call me back ASAP! It's Neena!".
That's when the nausea hit me. I knew. 
She was just walking outside and stepped into a hole. Snap! Goes the tibia and bent the rod too! 
More nausea!
She needed surgery to replace the rod with a more specialized rod that is stronger. So we set it up for July 16th.
I wept! We were all so deflated. 
This was not the plan. The plan included being healed of every sickness! Never breaking again! Being whole and happy from the inside out. And the moment this happened AGAIN.....I felt sick, angry and just discouraged! And I could tell Neena was too. I wonder what her plans were? I'm sure it wasn't this....again!
So we marched through and made a lot of decisions about the whos, whats, when's,  and where's of the surgery. We prayed and God was faithful and opened doors for the right surgery to happen and we truly believe his hand was guiding it.
Surgery day: our anesthesiologist was a sweet Lady from Bombay, India, who gave Neena a new toy, which ended up being a singing Belle doll and Miss Potts! Overall she did better pre op this time than before. 
Surgery was supposed to take at least 3 hours and the tricky part was going to be removing the bent rod without shattering her bone. So we prayed that the rod would be like butter and it would come out smooth! We had a huge support of family and friends there that blessed me to pieces! 
The surgeon called at 1 hour 45 minutes into the case saying he was closing! Everybody in the room was so excited and I thought, "this is it! Her bone shattered and they are closing her up! Her leg will be cut off and she'll ask me why I ever brought her here?".....yea I was struggling! I mean when they finish a surgery way before expected that could be good OR bad!!!
But the doctor came out and said it went so well! He showed us X-rays and told us he didn't have any problem removing the old rod. He said it came out smooth as butter.....no he didn't say the butter part but he should have!! We all know that's what he was thinking...butter!! 
We were supposed to stay a few nights in the hospital because pain after this surgery was supposed to be a lot more. Last time she screamed in pain the first 6 hours postop. This time she snoozed the first 3 hours and woke up asking to watch the Aladdin movie I promised. She was truly remarkable. She did not have any IV pain meds that first night and we got to come home the next day!
So what now? she is in a bright purple cast (she was over the blue, yellow and pink she had before) for a few weeks. She starts kindergarten august 10th and we have begged the doctor to take it off before school  and so he will!!! I'm not sure how the next few months will go after that.
Neena acts like she doesn't know she is "soft". At first we didn't want to tell her "you can't" all the time. But she is just so...rambunctious....wide open....bull in a china shop.....and 5!!! A few days before the surgey I caught her outside riding Luke's skateboard down the decline from the carport????? What??? I might die! And she might too!!
We will let her use a wheelchair to get around at school for awhile. An aid will help push her to the bathroom and down the hall. But we will be doing a lot of PT and swimming!!
When the X-rays look healed and the bone strong she should be able to be at school without the wheelchair. Again, I might die from the stress! I mean I have my sweet big girl starting middle school and my babies starting kindergarten And one of those kindergarteners could break if a kid pushes her in line?!!!! Aaaah! 
We are newcomers to the Osteogenesis Imperfecta scene. But Let me just tell you about these moms...they are strong and self taught splinting experts, amazing and fight for their kids! Could you imagine a newborn crying and not knowing if they fractured during diaper change? Or when a toddler learns to walk and falls every 2 steps, if they just broke their femur? And the Er calling DHR on you because they think it's child abuse?!!! That's what you call living on the edge!! 
For every parent who has a child with a special need where you have to worry about their health and survival with just day to day activities.....you parents are special too! Chosen, called, gifted....fighters! 
I wondered why it was such a fight to bring Neena here. We were in training for the fight on the home front! 
Good thing is we are not alone and we don't fight in our own strength! And we aren't fighting flesh and bone anyway! 
We are learning that bones are bones, and they will break. But family is strong and that will never break!
Neena may not be healed (yet as far as we see healing), but she is loved and has a family whose gonna fight for her! 

The girl with the unbreakable spirit!