It is hard to find a place to start when it comes to the medical side of Truman. Mainly because we have no real answers so every experience ends with, “Well, we really don’t know what is wrong, but we know something is wrong.”
Truman has been seen by specialists from the top of his head to the tip of his toes. He has been poked and prodded and then poked and prodded some more. A basic rundown of Truman’s situation…
Truman started having seizures at 5 days old. Actually, I think it was happening earlier than that…in fact I think he was having something like a seizure when I was still pregnant. I remember feeling him jerk around in there and commenting that it felt like he was having one. At that time we laughed and joked about having a very active child. After his arrival he struggled for the first 24 hours to breath and was on oxygen. Each time I held him I just “knew” something was wrong. He was beautiful and tiny and perfect but something just didn’t feel right. When he started having the seizures a few days later I wasn’t surprised. Scared, but not surprised. We ended up at our now home away from home, Children’s Mercy, in the NICU for a week. They began the poking and prodding process. We found out that he had low calcium levels and a few doctors felt like that was the answer. But the nurses and another doctor told me that it wasn’t and looked at me in a way that made me realize that we were far from done.
We started seeing his neurologist who referred us to other specialists based upon his main symptom, Low Muscle Tone (LMT). We saw GI doctors because of tummy issues…caused by LMT. We had tests done that showed major issues with swallowing…caused by LMT. We saw ENT…LMT. We saw Physical Therapy…you guessed it, LMT. We eventually landed in Genetics. Our neurologist had already performed a lot of testing in the genetic area but they did some more. Everything always came back negative. We had some big scares when a syndrome or disease would be thrown around by the doctors. Waiting for weeks on end for test results to come back while trying to pretend like our entire lives weren’t hanging in the balance. Negative. But he did have LMT!
The LMT has caused many developmental delays. He crawled late, walked late, had difficulty growing…and now talking late. We have a new version of time. We call it Truman Time. He has always eventually done everything he was supposed to do but just on his own timeline.
Currently we are on what I call the “See you in 3 months” plan. We see a doctor, they are excited by his progress, they say they wish they had more answers and then tell us to come back in 3 months. I used to be terrified between visits. I thought that he has some horrible syndrome and that we were losing valuable time. That if we figured out what was wrong in time we could make it all stop, fix it and everything would be normal. I also feared that it was one of the really, really bad ones. The ones you skip over when reading on the Internet because it is too scary to even read about. The ones that say “average age of death.” I worried that we would find out it was one of those and we had wasted so much time without knowing that our time was short.
Now…well…I am usually OK with the 3 month plan. It means that there is nothing major going on and we can just keep moving forward. The fears still seep in occasionally but I know how to deal with them now. In fact, right now we are waiting on some huge test results. Huge. We have been waiting 6 months and could wait another 6. We are part of a genetic study that looks at the entire genome instead of just one little part specific to a syndrome. The idea behind the study is to find out if Truman has anything wrong on any part of the genome. If something shows up that info will be placed in a international computer system. It will search for any other kids who have similar changes and check the symptoms. If there is a match then we can hopefully start to see what could turn into a newly “found” genetic syndrome. Someday there could be a Truman Meyers Syndrome based upon his participation. Not exactly the fame I had hoped for…but if it can help a future child and his/her family know what the future holds then I think it is the best fame anyone could ask for.
If nothing comes back abnormal in this study we are literally at square one. We have no idea if there is something “wrong wrong” or just a bit delayed. It is an interesting situation to be in because we may literally never know what is going to happen. So much for my desire to be “in control” at all times.
For now we continue to do what we have always done…love him and provide him with opportunities to succeed. Each day he shows us a little more and we are always amazed by every little step forward. Many people hear the word “delayed” and assume that it is also mentally…and to this point that isn’t true in Truman’s case. He understands everything that is said. He follows high level directions, can identify letters and numbers and colors. He can turn on an iPad by himself, find his game and play….which is advanced for some adults I know! His ability to show us everything he knows is only limited because of his lack of speech. But we are working on new ways for him to communicate and continue to offer him the same type of activities that any 3 1/2 year old would be interested in. You should see him play Candy Land with his sister! Whew! He is a champ!
So…another long post for another long story. I didn’t even talk about his submucosal cleft palette, laryngeal cleft, hearing issues, tubes or surgery…
Well, another post will have to cover that info…