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More Questions, No Answers….

February 18, 2012

“Sometimes the questions are complicated and the answers are simple.”
― Dr. Seuss

It’s been one of those weeks, to be sure. I suppose it started last week with Mary’s annual early intervention evaluation and those standardized tests that are essentially designed to highlight her weaknesses. I try to tell myself it’s only so that she can continue to qualify for services- just a formality, really. But somehow seeing on paper, exactly how she lines up compared to other kids her age, really stings.

Then, this is the week that the latest rounds of test results start coming back in. I spent much of the week on the on the phone with doctors trying to decode what these latest results might be showing us. So far, the consensus is that we are no closer to a diagnosis.

And now, there appears to be new reason for renewed urgency in the search. In discussing Mary’s progress with her team, we have become aware of a new problem. She seems to have lost yet another of her hard-fought skills. She is no longer isolating her finger to point to items on her IPad or to play with push button toys, or to touch pictures on the pages of her books. Another regression. Another clue pointing to something more sinister lurking in her body, somehow hidden from all those blood tests.

There has also been another frightening development. Even after two normal EEGs, it appears that Mary has developed seizures. These episodes have yet to be picked up on these short, standard EEGs, but they have now been witnessed by several of her therapists, and they are becoming more frequent. Whether this is what might be causing the regressions, or if it is just another symptom of whatever is causing all of Mary’s symptoms, I find it terrifying.

Each time we have a regression, it is a huge loss. She works so hard to get these skills. It took her such a long time time to be able to isolate that finger. It is so important to her ability to communicate with us at this point. In reality, it is critical- as she is using the IPad to communicate with us at this point. She has already lost her expressive language. My fear is what will she lose next, if we can’t stop this process?

During all of this, Troy, my oldest, has been going through his regular February meltdown season, seeming to take his little sister Joyce, straight down that path with him. There are hour long meltdowns, two at a time, a couple times a day right now. It seems to happen every year at this time, but this year, since Joyce is older, it’s become even more exciting.

Yeah, it’s been fun here. We have managed to squeeze in multiple playdates and even start packing up the house a little, so we can put it on the market. We have two birthday parties and basketball over this long weekend. But at least we don’t have school on Monday. Maybe we’ll be able to find a way to separate a little from the worry.

2 Comments leave one →
  1. February 21, 2012 3:07 am

    I can’t put it in to words but.. I have felt the same fear for my child. Every thing he learns takes ten times the effort and each time he has seizures or goes into status, we have to wait and see how he will recover. My heart goes out to your little Mary. May God protect her and keep her safe from what ever this illness may be. I also wanted to ask- has she ever had a continuous video EEG ?

  2. February 21, 2012 3:16 am

    Thanks. She has had two EEGs, and it looks like we’ll be doing the video one soon. They have been telling me if this, then that will soon follow kind of stuff, and unfortunately, it looks like their predictions are coming true to some extent. It was such a (unexpected) miracle when she finally starting walking without the walker, but I still have it, because I’m just so afraid that will be the next loss….
    I hope you and your little guy get to go home soon. You are constantly in our prayers. Thanks for stopping by.

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