New Issues

I have not posted in three months! I spent the summer home with Tucker, so you'd think I'd have had time to write an entry or two, but I did not. Now we're back to school, and work, and Tucker has his nurses back. I had two weeks of this new routine before Hurricane Gustav hit-it was truly unbelievable what that Hurricane did in the Baton Rouge area, we were out of power for six days, and many roads were impassable. We had a generator, so Tucker was fine-he had A/C during the day, and his vent at night. There was really no choice but to play outside all day, so Tucker had a blast! He ran around, rode on the four wheeler, rode on the lawnmower, and was spoiled rotten by his grandparents and aunts and uncles. This first week back to "normal" has not went so well, he still wants to be outside all day, and he follows me around-we were literally stuck at the hip for ten days, even at night, during the hurricane, and it's hard to wean us both from that. So, medically, Tucker is on CPAP at night, which is still the vent-it's just a better setting. He had a sleep study about a month ago, we got the results Thursday-his lungs are fine, but his CO2 is getting too high to get off the vent because he is having seizures. He had them all night, and the dr has to go back and look to see if the drop in CO2 causes the seizures, or if the seizures are causing the drop in CO2. He thinks his lungs look way too good to be the cause. So we are going to the neuro in a few weeks, hopefully we'll get some answers. I watched him that night during the sleep study-he didn't have any visible symptoms of seizures. My friend Kristin (Mom2Kamryn) thought maybe he's having silent seizures during the day as well. Tucker has times where he stares into space, and if you call his name he doesn't answer. Then there are most times where he's very attentive. His therapists have been thinking he has PDD or is autistic because of the lack of eye contact, and because it takes him so long to learn new things. I think maybe the seizure idea could explain those same symptoms. Meanwhile, we are dealing with sensory issues galore! Tucker loves loud noises and big, rough movements. He is happiest when rocking in a rocking chair or swinging outside. He licks everything, and I wonder sometimes if he gets enough input from his fingers to really feel things. So maybe he needs to feel things with his tongue to understand. He only signs "mommy" and "more" well for me. But the "mommy" sign is so cute! Because he says it when he really wants me, and I can't resist picking him up. So I guess that's enough for one day, I'll start updating more often so that I don't have so much to say!