Month: May 2017

A decent part of Jojo’s life is spent dealing with testing. There isn’t a high count, but when they do happen they stretch out from start to end to form significant periods of time, becoming the tent poles of her life. Gearing up for the tests can be difficult. The anticipation and worry, the preparation, the logistics of taking time off work and shuffling Jojo’s brother’s schedule. Then there is the test itself, which usually puts Jojo through the ringer – needles and blood draws, huge MRI machines. Then of course the results that bring relief in the short term and  anxiety in the long term as we continue to search for answers.

The easiest part of the testing cycle for me is the period of time when the test is behind us and the results are in front of us. I call this content limbo. There are no tests scheduled on the horizon, nothing to get ready for. The results aren’t in yet, so there is nothing to react to, ask a million questions about, worry about what is next. There is just a relaxed period of time while we wait. I find that I don’t fret while waiting. I think because it is totally out of my control. My own actions have no bearing on the outcome of the test. I can’t do anything to make the results come out one way or another. I am not responsible. It is up to the doctors, science, the universe, God, whatever or whoever makes things as they are and decides to reveal the truth to us.

Today I’m in content limbo. Jojo had the MRI early this morning. She was a total champ. It was a cold foggy day here today and we lounged, cuddled, played, napped. The whole family had dinner together. The kids had a bath. Jojo is in bed. I’ve poured a glass of red to get me through some work I need to catch up on tonight. I am perfectly content. We’ll get the MRI results in two to three days and until then, the weight of this thing is not on my shoulders.

Something very exciting happened in the speech milestone realm this past week. During dinner, Jojo held up her fork and said “fork up”. Two words together! It sounded like “for ah” but I knew exactly what she meant. When she’s in therapy, a common activity is to play with a ball or block or whatever and hold it up saying “up” and then take it down and say “down”. This is a game she mastered months ago. She started by imitating. She eventually started initiating herself, and now “up” and “down” (“ah” and “da”) are solid parts of her vocab and a favorite game.

This is a 12 – 18 month milestone so it is hugely encouraging. So, forks up, glasses raised, cheers to Jojo!

Remember a while back when I talked about the genetic testing, all of those letters? Lama1 and TTN. And hubs and I were going to get tested as well to see if we had those same VUSs (variances of unknown significance)? We got the results back and it turns out that I do indeed have the same variances. And I’ve never had gross motor or speech problems. Well, except for the lisp I had until fourth grade. Thanks mom and dad for waiting to start the speech therapy. I’ve been told it was cute.

So what does this mean for Jojo? It means we can say with certainty she does not have a genetic disorder. When I heard this I felt immediate relief. Later that night, long after we’d left the doctor’s office, I started feeling anxious. I’d gotten on an evening flight to LA for meetings I had the following day. I called hubs when I landed, realizing I felt an overwhelming need to be home with him and our sweet little cherubs. We didn’t really discuss the appointment and results much because they were so positive and we didn’t have time. By evening my mind led me to: if not a genetic order, than what? And if the answer is truly nothing, there is no root cause, it is just benign hypotonia, what if all this therapy doesn’t get her to walking and talking? Ever? For the first time, I imagined Jojo as an adult who couldn’t live independently.

Back to the doctor appointment for a minute. After discussing the genetic results, I asked Jojo’s neurologist a question that has been rolling around in my head for a while but had never been able to articulate. Is Jojo’s low muscle tone a problem in the muscles themselves, or in her brain talking to her muscles. Her neurologist nodded her head and said yes, that is the million dollar question. Guess what though. No answer. So that led us to our next step. Jojo should have an MRI to have her brain and spine looked at. There are no concerns or indications that Jojo has brain or spine damage. It is a low probability scenario that we’ll rule out.

She is going in on Tuesday. The MRI and anesthesia are perfectly safe and our hospital is amazing. It will be a hard day as Jojo has to fast starting at midnight the night before. I can just imagine in the morning when we don’t give her milk or breakfast. She’s going to be pissed. And then when we roll into the hospital? It will be bad. I’m taking the entire day off work so I can snuggle with her all day long.

So why did my mind go there? Imagining Jojo at 20 years old, living with us in a wheelchair? That has probably been lurking under the surface of my consciousness all along and has been too painful for me to handle until now. The brain is such an amazing thing, it protects us. So maybe now I’m strong enough to handle that possible future. And it is freeing to consider all possible futures with our little Jojo no matter what they may be. Because the truth is, they will all be perfect with that angel.