Sunday, January 24, 2010

First "E" Ticket ride!

Lots of great things to report about our Jenelle. Her seizures remain stable and it seems every day she does something new. Unfortunately, new things have been a little "costly" of late, but I'll get to that in a minute.

On Friday Jenelle had her annual eye exam with her opthamologist. Physically, her eyes are perfect, even though she appears to be a bit near sighted. Dr. Ching, who has been following Jenelle since she was a baby, said that the improvement in her tracking is outstanding, however without her being able to communicate what she can and can't see, the quality of her vision is still unknown. Of course, we've always known that her blindness was cortical (meaning her brain was not making the connections for her to see) and we always knew it was something that would get better with time. Glasses are not an option at all for Jenelle because we really can't tell how poor her nearsightedness might be. So for now, physically the eyes look great and we'll see him in another year.

Brett has always been near sighted, and we've assumed the same for Jenelle because she tends to get up close to things when she is playing, especially if she is watching TV. She likes to get up close to the screen, and hold it from the top. This became a costly problem on Saturday when Jenelle pulled over our flat screen TV and shattered it. It was one of those "I'm thankful you didn't kill yourself but I want to kill you for doing it" moments in parenting. She is fine and was unfazed by the ordeal.

Jenelle is really quick these days around the house and has mastered going up and down the step in our entry and can not get into the room where she is not allowed (i.e. the room with many breakables still in it!) She also has mastered opening and walking through the safety gate that keeps her out of the kitchen. I was shocked the other day as I was heating oil for tacos and found Jenelle standing next to me in front of the stove. We know she loves food, and her impatience to be fed has taught her to out master the safety gate. This kid is brilliant I tell you! And did I mention she is quick?

And finally, a fun milestone to report. After being couped up inside all week because of the rain, Aunt Nicki and I took the kids to Disneyland today. Jenelle had been agitated on the ride there, but suddenly calmed down and started smiling the deeper we got into Main Street. Jenelle loves Disneyland for its bright colors and music. She does well with the rides too and will pretty much ride anything except the roller coasters, Tower of Terror, Soaring over California, and up until today, Indiana Jones.

Today I had a wild hair and decided Jenelle might enjoy Indiana Jones. Nicki and I decided to strategically sit her between us so there would be no possibility of her falling out. She sat well, smiled a couple of times, and held our hand tight throughout the whole ride. It was a new experience for her, and from what I can tell, she enjoyed it. Of course, we had some trouble at the very beginning. Just as we were starting the ride, one of the cars ahead of us broke down and had to be evacuated (cast members had to walk to them with a ladder to help them out of the car). We sat in our car for 15 minutes and Jenelle started to get a little antsy. I was relieved we didn't have to evacuate our car because Jenelle's wheelchair was back at the loading dock. After the delay, we went through. At the end, the cast members asked if we wanted to ride again because of the delay. We were already buckled in, so why not? So for her first ride on Indiana Jones, Jenelle rode twice in a row! It was fun, yet she held onto our hands tightly the entire ride.

That is all for now. I will keep you posted.

1 comment:

Aimee said...

Hi Kelly,
My name is Aimee and I found your blog through a link someone posted on a BabyCenter message board. My daughter, Emily, is 2 1/2 and has almost all of the same diagnosis as Jenelle - infantile spasms, gtube, and cortical visual impairment. Your blog has left me feeling so hopeful for Em, especially your posts about school and disneyland, so fun! I'm going to follow your blog, thanks so much for sharing your story! :)