Dancing Through the Fire

About a year ago I realized that I probably needed to start paying more attention to songs that I listen to in the car because Will remembered everything and would repeat. This hasn't gotten me in to trouble yet, but I know the day is coming! We were listening to "Roar" by Katy Perry in the car a few months ago, and a couple of days later Will asked me, "Why does that girl dance in the fire?". It took me a few minutes to figure out what he was talking about. I explained to him that it meant she was brave and strong and could get through anything.

JT and I had spent so many hours trying to assure Will that doctors our are friends, shots don't hurt, there is nothing to be scared of, etc. When I watch him at office visits now, it is simply incredible to watch how brave he is. It also makes me very sad that he is so good at these appointments. It isn't fair to him; he should not be this experienced. He can walk a nurse through a vitals check with the greatest of ease. We now get blood drawn every few weeks at the pediatrician's office. He lets out a scream when he sees the needle, and then that is it. No more screaming, no fighting, no tears.

"Roar" has become one of Evie's favorite songs now so we play it a lot. I fight back tears when I hear Will sing along. He often stops when she says "dancing through the fire" and tells me that he is "brave, strong, and I can get through anything". I know that there are so many worse things that we could be dealing with, but this is our fire and it consumes us.

Recent news:
We went to Cincinnati the week of Christmas to get an updated MRI, complete the neurogenic bladder test, and see Dr. Adams and team.

MRI:
The MRI was really tough. Cincinnati does things a little different than Vanderbilt. Instead of taking him from us while he was awake to give him gas to put him to sleep before they insert IV, they suggested that we be in the room with him. Will has never liked the gas mask (he calls it "the circle"), and he fought us as soon as he realized what we were doing. I'm not going to elaborate, but I'll say that it was a terrible experience for all three of us. We told them that we would not be a part of that step again. Now I'm hoping that he can skip the gas in the future and just go straight for an IV. He does well with blood draws, so I don't see any reason to torture him with the gas in the future. The MRI result showed that nothing had changed. The spinal cord is still tethered to part of the malformation. Surgery is really the only option we have to make sure that he doesn't have issues with bowel, bladder, and leg weakness in the future.

Bladder test:
When I was first told that we needed to get this, it wasn't really explained in detail about what actually was involved in the procedure. So I messaged Dr. Thomas at Vanderbilt and asked him to set it up for me. He called me soon after and asked if I knew what this test was. He has had enough experience with Will to know that this wasn't going to be easy or fun. It involved Will being awake, a rectal tube, and a urethral catheter. Did I mention he had to be awake?!?! I called Cincinnati and got some information that the team there did these daily and has excellent child life specialists to help. I decided to schedule it there since we were going for an MRI anyway, and I'm pretty sure Dr. Thomas wasn't sad about that! So we had it done the day after the MRI. The nurses were amazing! Truly wonderful! I had worried and worried about this procedure and the fight Will would put up, but he got through it like a champ! He didn't like it and will be very unhappy when we do it again later this year, but I can honestly say that it went very well. He got to pick a DVD to watch/distract him. He was given 2 squishy stress balls which he somehow knew exactly how to use. He would squeeze them when he was upset and take big deep breaths. Once again JT and I witnessed the strength and bravery of a 4 year old that is well beyond anything we could be ourselves.

Clinic visit:
The visit always starts out with a photographer coming in to take pics of the malformation. It is always the same guy and he was talking to Will about sports. He came back with a really nice basketball net that hangs over the door. Note to self: going to the hospital the week of Christmas has some fun benefits! Dr. Adams and Dr. Dasgupta came in and just did a routine visit. Will ended up in Dr. Dasgupta's lap at one point - she has such a great demeanor with him and he is so comfortable with her. Dr. Dasgupta left the room and Dr. Adams said she needed to tell us something about herself. My heart broke - I knew what was coming. It was the same tone and look that Dr. Snyder had when she told me she was leaving Vanderbilt just 6 months before. I still haven't recovered from that; it was like losing my right hand. So as expected, she said she was moving to Boston. I have officially now lost my left hand too. JT instantly said, "OK, we'll come to Boston". I mean, there is no question...we follow her! She has saved Will in our minds. She is behind the research and she KNOWS how to help him. There are very few people in the world that KNOW how to help him and we will travel to the ends of the earth to continue with them. I fought back my selfish tears (kind of) and kept telling myself that it wasn't about me. It was about her and her need to be near her family. What a great opportunity for her! I did good for a while, and I then I realized it wasn't about me or her, it is about Will. And we NEED her! She assured us that there is no need to come to Boston. She wouldn't be leaving the clinic and her patients if they weren't going to be taken care of. She has taught and trained all of them and they will continue on. We love Dr. Dasgupta and have a lot of faith in Dr. Patel when we need him in the future. We will stay with Cincinnati for now. Dr. Adams will still be communicating with them and we can always reach out to her when we want to.

Overall, it was an emotionally exhausting visit. We left with a plan. We wanted to get the tethered cord surgery scheduled as soon as possible, because we wanted it done while Dr. Adams was still there. Not that she is performing the surgery, but it would be comforting to know that she would be checking on him. Unfortunately the timing didn't work out. She is leaving in February and surgery is in March. I am comfortable with the team that remains and know that we are in good hands.

Keep praying for this strong and brave kid! He is about to go through so much, but I have no doubt that with the combination of his strength and the power of prayer, he'll overcome this obstacle and all others put in front of him!