I haven't blogged about our little Benson's physical condition much because I have been waiting for his appointment with the neurologist. So, I guess it makes the most sense to start back at the beginning. We first started to notice something wasn't right when he was about nine months. He had been scooting around for almost a month but still wasn't using his legs to help scoot. We also noticed that he wasn't bearing weight or pulling up to furniture. I scheduled his well child check and we brought this up with the pediatrician. She said she wouldn't say she wasn't concerned, but that we should watch it and possibly do physical therapy if it hadn't improved by 12 months. So, between 9 months and 12 months we moved to Utah (temporarily). So, I took Benson in to Vanessa's old pediatrician just days before turning 12 months to get a second opinion. He wasn't too concerned. Benson is very age appropriate in every way except that he doesn't use his legs. Makes things kind of confusing. So he recommended that we do one of three things 1)see a neurologist 2)physical therapy 3)wait and see if he catches up on his own. Our situation of moving around the country for the next year made things even more difficult. How do you follow up with physical therapy or a neurologist if you don't live somewhere for more than a month?! I explained this to the pediatrician and because it didn't seem that pressing, he just left it up to us and told me to call if we needed any referrals. About two weeks later, we left for Kansas City, MO. We were there for two weeks and then we drove to the other side of the state and planted in St. Louis for three months. I had decided that I would call First Steps (the community development intervention program) while in St. Louis and see how that went and then we would go from there. Jon and I were going for a walk one day with the kids and he mentioned he had been talking with a doctor that day about muscular dystrophy, particularly duchenne muscular dystrophy (DMD). It's a pretty agressive form that manifests itself at a young age. I had a distinct feeling right then that I needed to call the neurologist. And for a long time, I felt like it meant that he had DMD. I scheduled his appointment the next day.
November was a rough month to say the least. I spent hours after everyone had gone to bed sobbing over any information I could find on the internet. I searched everything from neuromuscular to hyptonia, to brain, spinal, etc. I finally had to stop.
First Steps came and did a full evaluation. Ironically, he was advanced in cognitive skills by several months and less than half his age in gross motor skills. He qualified for weekly physical therapy, at no cost to us. Sometimes those government programs really are a blessing :) The physical therapist came to our house and worked on his balance, trying to improve his weight bearing, overal development of his leg and core muscles as well as massage. December was a much happier month. I was feeling more able to deal with the reality that something wasn't right. That something was wrong, though I still wasn't sure to what extent.
Right before Christmas, we left St Louis and came back to Utah. Originally, the kids and I had planned to go with Jon to Denver, where his next rotation is. But with Benson needing regular physical therapy and having appointments set up with the neurologist and Shriners (we applied for Shriners and he was accepted as a patient there as well), we didn't see how that would work anymore. Jon stayed with us through the holidays and then left for Denver. The soonest we could get in to see the neurologist was Jan. 5, and this was scheduling clear out in October! On Jan 5, my parents and Vanessa and I all took Benson to the neurologist. I doubt they usually get such a large crew. Ha ha. My dad took notes, my mom entertained Vanessa, and I sat with Benson for his evaluation. I thought I had been thorougly prepared for his appointment. But, turns out I was unable to answer a lot of questions, including family history (mostly Jon's). I also continued to think of things I had left out over the next few days. That is so frustrating. The doctor felt fairly sure that it was not muscular dystrophy but wanted to do the blood test anyway, just to be sure. She also didn't feel it was brain or spinal. She decided to do an EMG, or electric diagnostic. She will put little electrical impulses on his legs and test whether or not his neurons are firing correctly. She will also put a needle into his muscle to test the neurons. She said that usually they use general anesthesia for this procedure, but was willing to do versed only for Benson because he isn't very wiggly. Versed is not a pain medicine, it is only a sedative. So he will feel it and he won't like it, but it will eliminate the risks associated with general. She left it up to me to decide and I wished that Jon were there to decide. He's the one that has been studying this for the last year! Finally, I decided to just go with the versed. We scheduled the appointment for January 30, again the soonest we could get in. We headed over to the lab that day though and did the blood test for MD. I called in just today and got the results, everything is normal.
I'm very unsure of what the future holds for our little Benson. The doctor mentioned that her first impression is Spinal Muscular Atrophy (SMA). I remember talking with Jon awhile ago and one thing he said was "let's just hope it isn't SMA." The doctor suggested NOT googling SMA because there are several subtypes, and Benson would be a type 2 or 3. Type 1, they are usually diagnosed at birth and immediately put on a ventilator. They usually don't live past 2 or 3 years. I don't know what type 2 or 3 would look like, but I imagine it isn't much better. I decided not to google until we know for sure. No sense worrying about something that may not even come to be. It is most likely something neuromuscular. Charcot Marie Tooth (CMT) is another one that closely resembles Benson's symptons and is a lot less horrifying. He would most likely be in a wheelchair, but it would never affect his organs so he could still live a full and "normal" life. While it isn't life-pressing that we get an answer now, it would be nice to know and move forward with the facts. I just really hope that this appointment on Jan 30 gives us some good answers, if not a definitive one.
Surprisingly, I feel like I am doing well. I can't speak for Jon, because I haven't asked. But I feel like this has come on slowly enough that I have had time to adjust and grapple with it all. I have always been amazed by people when in times of trial, they can be positive. How can you be positive when life is throwing you wicked hard curve balls?! I kind of felt like when we first came out here that our family wasn't sure if I was going to be a complete wreck or not. At first, they seemed a little tender, just trying to be sensitive. Things have normaled out now and they have realized that I can have casual conversations about it and I'm not moping around like life is miserable. We move on and deal with life, because what other choice do you have? But I can honestly say that I have felt the sustaining power of Christ every step of the way. I have read the scriptures my entire life, but it has taken me 25 years to finally understand one of them in particular. I guess that is the whole point of trials, to teach us and cause us to grow. But I finally understand how things that seem so hard are possible with the Savior.
Matthew 11:29-30 "Take my yoke upon you, and learn of me; for I am meek and lowly in heart: and ye shall find rest unto your souls. For my yoke is easy, and my burden is light"
