Wyatt at 15 months 'army crawling' around the playground.
I had just gotten off the phone with our pediatrician. She said it was time to see a neurologist and to get an physical therapy consultation. She gave me the name of her first pick pedatric neurologist and a program in our area called Early On for PT.
When I hung up the phone, I didn't know what to do. I sat on the edge of our fire place for a few moments just watching the boys play. Thinking, "There is something wrong with my baby." I started to research elevated pedatric CK enzyme. Things like Muscular Dystrophy and Williams Syndrome came up. I learned more about the CK enzyme and what the possible causes could be. As a mother, I hit my knees more and cried out to Jesus more than ever. But this, this was a different kind of prayer, a prayer of desperation. Pleading with God, "Please, just let my Wyatt be okay."
I called Dr. Syodes office to get Wyatt a first consultation. I spoke with the scheduling nurse and she said that it would be a SIX week wait. I thought, hold on. Wyatt needs a consultation, theres something wrong, how am I supposed to wait SIX weeks? We heard a lot of "well maybe its not to serious since they don't want you in tomorrow" type stuff. Which I get the good behind the comment, I get the support and love that was behind it. SO, if I seemed rude when that comment was made, I am sorry. Every single time I heard that, I thought, "yeah maybe." Maybe my child situation isn't warranting a emergent run to the nearest neurologist. Maybe that just means the neurologist is so busy with other kids with illnesses and syndromes (insert a whole slew of angry conversations I had with Jesus) Regardless, something is wrong with my child...as a Mama (bear) it does not matter what the problem is, no matter how big or how small. You want it fixed, figured out, solved, whatever...right now. How was I supposed to wonder, and think, and research for SIX weeks before our appointment. The nurse said to call once a week to see if you can get a cancellations appointment. So, I called every other day. After about a week of me calling they found an appointment for Wyatt a few days later.
Two days before out first neurology appointment, Wyatt had his initial evaluation with our case worker from Early On. Aime, from the start was just so kind and reassuring. She did her evaluation and looked at me at the end and said "Wyatt has the gross motor skills of a 8-9 month old infant" Yep, thats right. My at this point, my 16 month old toddler had the gross motor skills of an infant. He should be learning to run and kick a ball, instead he's learning to crawl and pull up.
Let me add quickly. We told our family, close friends and life group what was going on shortly after we figured this all out. Guys, I don't think we or Wyatt will ever know the amount of people that were praying for him and us. The kindness and support we got from people was (and is) astounding, and we are forever grateful for every single one of you that dropped off treats (or wine) and came and prayed with us and for us. Really, thank you.
One person in particular went out of her way, she deserves the most beautiful angel wings and extra sparkly halo. That person is my friend Jeannie. Jeannie went above and beyond supporting me, listening to me, praying with me and for me and Wyatt. Jeannie has a daughter who has lots of needs and who is sick. Jeannie understood. Even though Wyatts situation was no where near similar to her Rivers, she was there. She understood what it felt like for a Mama to have something be wrong with their child. She just was there every single time I needed her. I don't even think she knows just how much she meant to me and our family through this.
Two days later, we dropped Parson off at Grandmas and drove to GR to meet Dr. Syode. We walked into his office and it was clean with brightly painted walls. We checked in and waited no more than a few moments before the nurse called us back.
She did the standard weigh and measure and asked us a billion questions about family history. She smiled and said that Dr. Syode would be in shortly. When he came in, he was bright and kind. He asked us questions and did a pretty good evaluation of Wyatt. Then he said its obvious that he has myopathy throughout his body, much more so in his lower half. Then he said we needed more blood work and a urine test. He also said that these results would take four to six weeks to get back because they needed to be sent to Mayo Clinic. Awesome. Apparently these neurologists like to do things in six week increments, and I didn't think calling every other day would move it any quicker this time. Im totally kidding. BUT really?! SIX weeks. So he told us where to go to get the labs done and made a a follow up appointment with him shortly after.
I dropped Aaron off at work, gave grandma an update and off to the hospital I went. I wasn't going to mess around with the other labs first this time. I got to the hospital with my only army crawling 15 month old. You know whats gross? Hospital floors. Hospital floors that your 15 month olds face is two inches from when moving. Naturally I didn't let Wyatt crawl all over the hospital, he snuggled up in the sling next to my growing belly with little sister inside.
The nurse called us back and said we needed to get Wyatt setup for the urine sample first. She said she wanted to get the collection bag on him and in his diaper first. She said she wanted it first because they needed to draw a lot of blood, that they would need to draw from both arms. That the pain from the blood draw usually made the toddlers urinate enough for the sample. Im pretty sure thats when my eyes started to fill with tears. She asked "Does blood make you queasy?" No, the thought of my child urinating in response to pain does though. I didn't say that, but I sure thought it.
Another note. I have such a respect for parents and families that have children that are ill and have to do this on a regular basis. I just don't know how they do it. How they watch their children go through things like this daily.
We got Wyatt situated and then they did the blood draws. They needed five or six viles of blood. I don't remember which because it was crazy. After the blood draw was over, I scooped Wyatt up to comfort him and get him calmed down. Then we checked his urine collection bag. You guys, there was so little urine in that bag, you would have thought he hadn't drank anything for days. The nurse was as surprised as I was. She sent me home with a goody bad of urine collection bags, a sterile container and a whole bunch of other fun stuff. She told me the lab hours and said to try and get a collection at home and just bring it back and drop it off.
Let me just say, getting a urine sample from a little boy who drags his torso and lower half across the floor and sleeps on his tummy is damn near impossible. Well, totally impossible. I went through 14 collection bags over a few days and did not even get 1ml of urine. I even brought him to the pediatricians office to have a nurse place the bag...nothing. Fantastic.
So we met with our PT for the first time and started working very aggressively with Wyatt to get his gross motor skills up to par.
Two weeks later he started to crawl on all fours and pull up!
We waited our six weeks and packed our things and headed to our follow up with Dr. Syode. He received the blood work back from Mayo and said that Wyatts CK enzyme was still elevated higher than he'd like to see. He also said it wasn't high enough to point flags at degenerative muscular dystrophies either. Thank you Lord for that answered prayer. He said he thought it could maybe metabolic, that maybe his body wasn't processing nutrition or waste properly. But, guess what he needed to confirm that....the urine results.
So we got good news of it probably not being a degenerative muscular dystrophy. We also were still in the dark because we still had no idea what was causing this for our Wyatt. We also still had to try and get that urine sample.
We made our next appointment and had a plan. Keep on working with PT aggressively and get that stinking sample.
xo
Patty
