EEG and stuff

We took Dylan for her EEG on Tuesday. Matthew was afraid she would crash on the drive and wanted me to go for the car ride. Thankfully Matthew's mom and Melissa we're available to tag team the boys and I was able to go. (And, they picked up around here! Bonus!) We started by keeping her up late and then I got up at 5 to get her up and guess who was already bright and shiny to greet me? Yup, already up at 5. So we played a little, her and I, and waited for the rest of the family. I sent Ian back to bed twice and Duncan once and they slept until 7. Matthew claims they won't go back to bed for him... So he gets up with them at 6 usually! No thanks!

She was tired and on the ride up every time she got the sun in her eyes I thought she was done for but she hung in there. She was so funny at the hospital though because she was falling asleep sitting straight up. Her eyes would roll back and she would catch herself. She looked intoxicated. When it came to setting up the EEG there was a guy we haven't met before, we have only had the girls and they usually tag team and get it done pretty fast but he said someone was running late. It seemed like it took forever and I wasn't the uncomfortable one in that situation. Imagine how long Dylan thought it took! She had three spasms when he was setting it up, I am not sure what triggers them, but she seems to always have them when they are putting the things on her head. Always. Of course they aren't recording then, so yippee, doesn't do us any good.

She went right to sleep but she can't breath well when she is on her back so she woke up a couple times. They want her face up so the camera can record her. Then it was over and she was ticked she only got a half our nap (at best) and we went on our merry way.

Right over to the lab.

I forgot the lab order from Dr. Endo but thankfully the lab was able to get the nurse in the phone and have her fax it over. I couldn't believe I forgot it after telling the nurse like three separate times that there was no need to fax it! Grrr. So she got a quick blood draw again, first try like last time, thank goodness for bigger chutes!

Paula told me she was going to go out of town and if she didn't see the results before she left she would get back to us when she is back in town. Sounds good to me, it's not terribly pressing, we are pretty sure they are Myoclonic. So we wait to see what they find out. I am going to go with a guess and say "a bunch of abnormal activity" who is with me on this one?

We had a ton of plans for last weekend and we didn't end up doing anything at all. We need to get the trampoline set back up for the summer and do a few other things around the house. Maybe next weekend?

It was LDS Conference weekend and due to some family chaos I didn't catch as much of it as I would have liked to but on the Sunday morning session one of the talks was by the grandfather of a child with a 7q deletion like Dylan. (Though no HPE, just a host of other things.) (Some people I used to volunteer with put me in touch with her.) His mom and I had traded a few emails when he was born. We just talked about expecting the unexpected and the usual stuff I talk to mom's about through the NICU. It was a great talk and it was fun seeing pictures of little Paxton on the TV! It will be fun reading it over again and again when the Ensign comes with the transcript. I have already watched it again on YouTube.

Duncan was carrying something the other day and told me it was "Soaking heavy!!" I think he has used that adjective before but I am not sure if I wrote it down!

Ian is super cute with his signs, he will ask for candy over and over and I will tell him no so he will look at me and sign it and I will give in because I am a sucker like that!

The other day Matthew's sisters were asking him to sign things and they said "What's dirty?" and he puts his hand under his chin and signs it. Then they said "say candy!" and finger to cheek he signs it. "More!" and he signs more. Then they said "cheese!" and he puts on this big cheesy grin and says "cheeeese!" Now that's the sign of someone who gets his picture taken too much!

Speaking of sign, we missed a couple of weeks because our sitter was off traveling and signing, and it didn't help that Matthew is teaching in Thursday nights. When it came to this week and deciding if we were going to do it we ultimately decided on no. Sad face. I am kind of bummed but we just have too much going in right now for it to be a priority. Sad!! We know a little, but not enough and frankly without Matthew and I tag teaming the teacher I don't get nearly as much out of it because he signs like we actually understand it all. Kind of a bummer, but maybe we will pick it up again later.

Our first clown cone from BR

He was so cute...

And messy! 

Poor girl

This is the worst part

This kids is surprisingly good at puzzles! That's my boy!

This is usually what we see of Asher when the TV is on...