ouch

We spent the 4th of July at home, just having a little cookout with our family and Nick's parents, because I worked at 3pm. After we ate, Nick was pulling the boys in their wagon - very fast - through our backyard. He does this all the time, but on this go-round, he hit a hole in the yard. The wagon tipped, and both boys flew out a few feet. B popped up right away, unscathed. Xavier fell hard (he can't protect himself from falls...his trunk and arms aren't strong enough) and hit the side of his head.

His glasses didn't break, but they managed to cut up the side of his face, give him a little shiner, and he got some grassburn on his forehead.

He took it like a man, only cried for about 3 minutes, and then just "talked" about it to us for awhile. It was very pathetically cute how he seemed to be saying, "we were going really fast, and then...and then..." :-) Nick finally let me hold him (he wouldn't let me at first, because he felt so bad about it). We were worried about him, because he fell asleep right after it happened. But he was tired before the fall (which was a reason for the wagon ride, we were trying to perk him up)...so we think he was just completely wiped out from all the drama.

Right after:

 

I didn't want to leave for work. :-(

 

This was the next day. He was getting ticked at me for taking so many pictures.

 

And today (2 days out...)

 

 

(I love the picture above, even though he has a little black eye in it. :-)

Car rides

have been (shhh! dare I say it??!) enjoyable lately! Ben has always been a good traveler...Xavier...uhhh...no. But times, they are a changin'! Don't know why, but I'm not going to try to figure it out. Lets just be happy about it.

 

 

This comes with excellent timing, as we have a lot of driving to do soon. We're headed on vacation July 11th to a rental house on the dunes at Lake Michigan, and will be taking additional trips into Chicago and Milwaukee from there. Cross your fingers for us, pretty please. :-)

mini golf

Saturday, June 27, Nick, Bennett, and I met our friends Will, Gabe, Clara, and baby Mallory at a Rinky Dink Minature Golf for a benefit for Akron Children Hospital's Cancer Center.

The weather was super, and we had a ton of fun. I LOVE minigolf, and I hadn't been in a long time. Will mysteriously threw out the score cards at lunch before we tallied up the totals...so we have no idea who won...but I have a feeling the evidence was disposed of because Nick and Will secretly did not want to be beaten by a girl. I totally rock at mini-golf. ;-p

First we golfed. Here's Gabe, Clara, and B waiting to begin our 18 holes:

 

 

Me and a half-naked, uncontrollably cute baby:

 

More cuteness:

 

 

Hanging out in the shade, waiting for our turn about mid-way through:

 

 

 

This was B's first time mini-golfing. He was focused. He was driven. And, actually, he wasn't too bad either! It took him from 4-10 shots on each hole. Not bad for never having held a putter before. :-)

 

 

Instruction from Uncle Will, with approval from Nick and Mallory.

 

Lunch from Panera. Yum.

 

Here's Gabe, Clara, and Ben waiting for our turn at the bumper boats. At this time, I had no idea how soaked I would be in 15 minutes.

 

Drenched, and trekking to the go-karts:

 

B was distressed he was no where near tall enough to drive the go-kart.

 

Nick and Ben:

 

Nick and Gabe:

 

 

 

Watching Will in the batting cage:

 

Another first for B :-)

 

Seizures

This is what increased number of seizures, combined with a change in seizure medication does to my poor buddy:

 

 

He's tired!! For those of you who have known Xavier for awhile, you know he's never been a sleeper. Now, he'll just fall asleep in the middle of an activity. And he routinely sleeps until 9AM or later, which is totally uncharacteristic for him.

His seizures have been changing. Increasing in number (about 15-20 a day), and they look different now too. Anyone would be able to recognize them as a seizure. His arms fly out to the side and pulse in and out a bit, he grits his teeth into a grimace, his eyes go out of focus, and his legs criss-cross straight out in front of him. This lasts for about 10-30 seconds, then he relaxes, and it continues on as a focal facial seizure. He clicks his tongue on the roof of his mouth and stares out of focus for about another 10-30 seconds. They're the same everytime.

He currently takes Depakote and Phenobarbital. After seeing his neurologist a couple of weeks ago, we increased his dose of Phenobarbital. We go this week to have a blood draw to check the level to see if he is in the therapeutic range. So far, I have not seen any improvement in the seizures themselves, or any decrease in their number. This is frustrating and worrisome to us. Updates to come...

Frightening.

Ummm, yeah. Nick will be promptly teaching him how to shave as soon as the first hair sprouts.

No glasses

Xavier broke 3 pairs of glasses in the span of a week. Right now, he's wearing his old blue glasses that are over 3 years old, while we're waiting for new glasses to be made. But before I came up with that idea, he was glassesless (is that a word? I just made it one...) for a few days.

He may not be able to see, but he still manages to look very cute. :-)

A first

in pictures: