Last week, we were cruising along. Getting ready for the final countdown before Y the Brave had to fly over the ocean. I was back to exercising. We were vigorously working on getting our final three dossier documents finished.
All of a sudden…everything changed.
Y and I went for a bike ride on Friday, July 31st. It was one of those awesome rides where you get in lots of miles and forget the humidity. When we got back home, the kids were playing Wii and Mark had stood up to talk to me. Emmie was toddling around, without her brace since it was close to bedtime. She was right in front of Mark. Holding on to the couch. I’ll never forget that. Because, all of a sudden, she fell. A normal toddler fall. She tripped on her feet or a toy left out but she fell.
She cried. Like all normal toddlers. But she also had her body twisted funny when Mark picked her up. He took her upstairs to get her pjs on and try to soothe her. But, she wasn’t soothing. She also wasn’t standing up. We tried to chalk it up to her exhaustion from not napping during the day (all week) and being so busy. So, Mark rocked her, but as extra precaution she slept in our room. Mark was up and down with her all night. Praying no doubt.
The next morning, our fears were starting to become valid. She could stand. She could walk with some assistance but she didn’t want to and cried every time we put her down. She also had several times where she didn’t even want to stand. Shaky on her feet or just collapsing completely. By the evening, we noticed her grip was not very tight. She was still very fussy and standing took a lot of effort. When she was able to stand, especially if she wasn’t holding something, she turned in her right leg trying to balance.
Our worry grew. We had been contacted earlier in the week about getting an x-ray with her neurosurgeon as a three month follow up but there was some confusion, so they were checking on it and we hadn’t scheduled it. Mark decided by that evening that he would call on Monday and get it scheduled asap.
The next morning, we had more tears. She stopped using her arms. Keeping them at a right angle with her wrists relaxed. If we forced her to hold something, she would but she wasn’t reaching for toys and didn’t show a big interest in doing much of anything. She was starting to walk a bit more independently but still very, very slow and shaky compared to how she was earlier in the week. And very reluctant to let go. And still abnormally fussy.
She was so tired in the ER and just wanted to sleep.
We made the decision that evening to call her pediatrician who told us we needed to call the on-call neurologist at CHOA. As an aside, our pediatrician is amazing, after thirteen years, I can gauge from her when I’m over reacting and when I need to buckle down and take things seriously. The neurologist wanted an MRI as soon as possible and the best way to get it was to head to the ER to be admitted and get one in the morning.
CHOA ER was awesome. Aside from getting us through the ER quickly, the pediatrician on call had been in touch with the on call neurologist, on call neurosurgeon and Dr. W, Emmie’s neurologist. They were on the ball and got us in a room as quickly as possible (yes, it was 2 am but we got there as soon as we could).
The MRI on Monday and the CT scan on Tuesday quickly found the problem. While her plexifrom neurofibroma is stable, the kyphosis (bend in her spine) is not. Between May and now, it has bent more and the spinal cord is noticeably more compressed. What was even more concerning was the inflammation on the spinal cord. All from a simple toddler fall that wouldn’t effect a “normal” toddler. Our team of doctors quickly gathered that Emmie’s regression was due to the inflammation.
Sporting her “koalas in space” pjs for the MRI
Late Monday, ready to play after some rest and food.
Granddaddy and Ge came over on Monday to soothe Mama’s nerves and help entertain Emmie. No doubt, Granddaddy gave the best fast rides in the wagon.
This was a neurosurgeon game now. Dr. C, Emmie’s neurosurgeon and a new neurosurgeon, Dr. R. quickly stepped in and worked together to come up with a plan.
Basically, it’s clear that the current brace system is not working. Our goal, more than anything, is to try and avoid spinal surgery until Emmie is close to two. At two the bones are way stronger. We’re ten months from two. Unfortunately, what they are seeing and Emmie’s issues from a small fall are concerning enough to have to take some more action.
Enter the halo brace. On Thursday, Emmie will have a halo brace put on and then be taken to PICU. They will put her in traction, meaning, attach a weight system to the halo and attempt to stretch the spine straight. She’ll be sedated the entire time. This process will take three to four days.
After traction, Dr. C will make a decision as to whether or not we have to do spinal surgery or if she can stay in the halo for ten months and then proceed with surgery.
Emmie has done amazing since last Sunday. She is now back to walking much like she has been. Even pulling up on things. We are keeping her in a brace all of the time minus a quick bath. And we are watching her like a hawk knowing that even a small fall could send us rushing back to the ER.
By Tuesday, she was working on walking. Babbit had to go for a ride too.
Emmie made a new friend, Mr. Fox. He’s a puppet that we met in the gift shop and he can make Emmie giggle or belly laugh in a split second.
Tuesday afternoon, we got to see more of our “old Emmie.” Exploring and playing and she discovered sliding down the slide was fun!
Daddy was able to come down Tuesday and instant laughs were had by all!
We know there are some amazing people out there who love our Super Em and are more than willing to pray. We have some very specific prayer needs right now.
1. Ideally, delaying surgery would be the best course for Emmie. So, please pray that her spine responds to the traction and she is able to just go home with a halo and surgery comes at two.
2. Please pray for all of us as we adjust to this new brace. It takes me about a week to get use to the brace but talking with another mom who has a child in a halo, I’m guessing this will take longer. She’ll no longer be able to go to the pool. Adjustments to car seats, sitting, standing, walking, bathing…it’s going to be a lot on all of us.
3. Y the Brave returns home in a little over to weeks. Mark and I have worked out a plan, while Emmie is in traction, to spend time with Y and the rest of the kids each day. That will make it easier, but obviously, we did not plan for our last two weeks to include surgery and all of these adjustments.
4. Peace. I need peace. I can’t believe that a little over a week ago we were just having fun being a “normal” family. And now this. I can’t believe that a year ago, at this time, we got the news that has changed our family’s “normal.” I’m relying a lot on God and He’s hearing from me constantly. I can say that I do have enough peace at night to sleep but it’s hard. So very hard to watch our daughter have to go through this.
The kids are working through a summer program at church where they memorize verses each week. Y the Brave has been working on Psalm 34:4, memorizing it in English while reading it in his language.
I sought the Lord and He answered me, and delivered me from all my fears. Psalm 34:4
