Doodle Bug Update

How's the Doodle? I'm so glad you asked...

The best way to describe him might be...BUSY. He's very busy doing things, pushing things, throwing things, taking things out of the refrigerator and putting things in the microwave.

He's getting bigger and bigger and for some reason has a serious obsession with oatmeal these days which I guess is better than his old obsession of chips. Oh and he loves tomatoes.

He still has his OCD, which is getting worse and worse. Jim compares it to a garden hose with a bunch of holes. You fix one hole and then water sprouts somewhere else. Well, the Doodle goes from one obsession to the next. One day it's the stereo, one day it's DVD's the next day it's the microwave and then it's the pantry.

For Jim's birthday my mom got him a cake. Remember? Doodle Bug loves birthday cake but not to eat, only for the song and to blow out the candles. Well. I bought him his very own wooden cake with wooden candles and we played with that for a while but when it came time for real cake he went a little crazy. I thought we might be able to fake him out with the wooden candles so that we didn't have to go through the process of lighting real candles. I told Jim he was going to have to blow out the wooden candle...the Doodle would have nothing to do with the wooden candle blowing. He wanted and insisted on real candles. He had a stage 5 melt down so of course I had to get out the real candles, light them and sing the birthday song. Over and over and over and over. We finally had to hide the cake and give him a time out.

We spend most of our days hiding things from him and fixing things so that he can't OCD on them. We had to put a lock on the pantry, duck tape the microwave closed and literally nail the stereo cabinet shut. He gets a little irritated with us at first but quickly moves onto his next obsession.

We finally have our next video EEG appointment at UCSF scheduled for February 22nd. Straight from one torturous field trip with one the next. We aren't sure how many nights we will have to stay, it all depends on the seizure activity of the Doodle. I'm having some issues with the toxic eeg glue they are going to use on his little head. The glue that he had a bad reaction to last time. The glue that gave me a migraine headache. The glue that acetone would not take off of his hair. Well, that eeg glue is not the only glue around. They have other less toxic water based glue which we have actually used when at Memorial Hospital for some eegs. So I told the EEG Technician that I want the gentler, milder, less toxic water based glue gel used on him and that I was willing to go to Memorial Hospital and buy it with my own money and bring it with us so that he doesn't have to endure the bad glue. God bless it if I'm not getting push back on this. Apparently, the other glue is stickier (for obvious chemical compound reasons) and they like it better when they are doing an overnight eeg. The doctor left me a message that it might not be worth doing this if they can't use the stronger glue. Well, it's not life or death here and frankly, I don't think it's worth it to do the damn eeg with the toxic glue and acetone. So there.

Seizure update...he's still only having the jerking wake up scream out seizures while he sleeps...several a night. However, these seizures are much much much better than the grand mal or the head drop seizures we were so very used to for all those months. These are fast and over in a matter of seconds vs. the aforementioned with their horrible aftermath.

The Doodle still has zero interest in the new unadopted by us yet dog. I have to prompt him with oatmeal in order for him to even pet him. Even when he pets him, he doesn't look at him. It's strange, he can't look him in the eye.The dog is completely invisible to the Doodle.

How is he with the cat you ask? A little better. With the cat he will sometimes initiate contact. And I can say give the kitty a kiss and he will do it. The cat on the other hand, well, she has zero interest in the Doodle.

The last week or so the Doodle has slept much crazy 2-3 hour episodes of irritable insomnia where we have to physically hold him down. The trick? We keep him up until 10 or 11 pm and then turn off the lights and the tv so that if he does wake up, he doesn't think it's cartoon time in the morning.

The Doodle is sick again. I don't know if it is the same freaking cold and he keeps getting it or if it's an entirely new strain of virus. All I know is that he has been sick most of the winter. Since Christmas Day he has had maybe three healthy days and that's it. His nurse swears he's getting it from the germ breeding ground we like to call a preschool. Being in the medically fragile class room, the kids in there all have weaker immune systems and are always sick. It's a vicious cycle and since I'm quickly turning into a crazy germiphobe, part of me wants to take him out of the school environment all together. It's not worth him being sick all of the time.

Behaviorally speaking the Doodle still has his moments but has been a little better with his fits. I do my best to be consistent with his time outs...if he acts up, he goes in the swing; if he starts to ocd and freak out, he goes in the swing; any throwing of any kind, he goes in the swing. Let's just say, he spends a lot of time in the swing and is completely aware of it's purpose.

He seems more independent to me lately. He has an easier time doing things for himself and keeping himself busy. When Grammy and Papa are home he spends a lot of time getting into stuff over there so maybe it's a false positive...I just don't see him acting up as much because he's not HOME doing it.

The Doodle is still not speaking, although he's got a really cute response that sounds a lot like Yes. If I had to spell it would look like this: ethsethsszzssddtsssss. He now says that word and hiiiiiiiiiiiiiiiiii and heyyyyyyyyyyyyyyyyy. Sometimes it sounds like he says more or mom but that's a stretch. Papa swears he said Verde the other day while watching Dora. You never know, stranger things have happened around here.

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