Saturday, April 20, 2013

"Hanging in There."

We received appointment dates for his FMRI and for our meeting with his neurosurgeon all of which will happen next week and the week after that.  In the meantime we are just counting down the days till his appointment dates, and trying to get by with as little extra hospital trips as possible.

Sweet little P.J is making great strides with his communication (most of the time things he babbles aren't clear at all but we know exactly what he means most the time...makes caring for him much easier) he is also trying so very hard to cute!  The Little Gym has helped him so much physically (and in many other ways) every week I see this little boy learning something new from them! Funny, his new word is "nany" for candy (of course, haha!)...if we happen to say "No" he does a wonderful thing...throws a fit like a typical two year old! :)

Recent, not so great, developments......
He is now having up to nine hard seizures a day and if what they say about his subclinicals are true, it means he has had at least eighteen all together (on his worse day). They are beginning to last longer as well, around four minutes being the longest so can see him struggle to come out but just can't kick it.  His clusters, strangely, seem to have taken a break though...but I can't say that I mind, I really hate days where he has them. His break days have also disappeared...yet another sign that things are heading in a bad direction. He has begun staring off again as well, which makes me a bit sad. I had been trying to ignore it but I brought it up to my husband and he had noticed it too. He doesn't blink, his eyes dilate, he just stares blankly, unresponsive for a minute or so during these spells....we have not seen him do this since his first surgery but he commonly did this before it. Another new development, he has now begun getting very flushed randomly throughout the day....I can't help but wonder what in the world is going on now.  The redness looks almost exactly the same as it did while he was on the ketogenic diet when he got too ketotic. Maybe somebody will have some insight with this? It isn't that he is over dressed and he isn't sweating so I'm thinking maybe it has something to do with his seizures?

I worry so much for just breaks my heart. We are hanging onto the hope, and trying to keep our faith strong, that things will get better soon.

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