Most parents anticipate the day their child learns to drive or graduates from college, big important milestones in life. I just want my child to be able to independently hold up his head and maybe sit on his own. that's it. that's all I ask. Those 2 milestones would be HUGE. It would allow him to use a regular high chair to eat at instead of having to have a special needs feeding chair. It would allow us to bathe him in the regular bathtub or a bigger baby bathtub instead of a special needs bath seat. I'm sure if he were doing those things I'd be wishing he could crawl, or walk. or talk. But for now, I just want him to hold his head up. It would be a huge milestone for us and we'd probably throw a party in his neck's honor.
We had a great week, no major seizure activity as far as we could see, lots of therapy sessions for the little guy and tons of increased movement and activity. Almost too much in fact since he's hardly sleeping at night now and we are up throughout the night trying anything to get him to settle down and go to sleep. He just wiggles and yells and throws his arms and legs around. He's not upset, most of the time he's laughing or just "talking" so we don't really know what to do for him. Maybe it's the medication increase and the dreaded "hyper-active" side effect we haven't seen much of yet.
True to form, Oliver had an awful seizure this afternoon following his neurology appt. It never fails that we meet with our doc, have a great discussion, put plans in place moving forward and everyone feels hopeful and optimistic...and then walking out....that sense of dread that we just jinxed everything...and then the seizure hits. Amazing how consistent that is.
But we have to be grateful for the amazing week we've just had, and remember there are others out there who have bigger and more complex issues to deal with and maybe we don't have it so bad after all. Seizures aside...Oliver is pretty darn healthy for a little guy with CDG and we can't complain much about that.
We've been given the ok and the advice of 3 separate neurologists to go forward with the Ketogenic Diet. So we'll do another 24hour VEEG next week to see what's going on with Oliver's little brain and then try to get schedule in for hospitalization to start the diet in the next few weeks. No med changes until we have the diet well under way. If things are going smoothly, we'll slowly wean the meds starting with the finishing of the clonazepam wean.
Hoping this diet works to both control the seizures as much as possible and to give Oliver a little break from meds to see what his development is like when he's just a baby and not a medicated baby.
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