Sunday, March 25, 2007

Something's Missing...

Jenelle's Big Brother Jack lost his first tooth on Saturday. He was so excited, he keeps checking under his pillow the rest of the day to see if the Tooth Fairy has been here. This morning, he woke us at 7:00 a.m. to show us the gold dollar coin she had left!

Whah! My little boy is growing up!

Thursday, March 22, 2007

Jenelle's new toy!

Finally I got some video of Jenelle chasing the vacuum - her new favorite toy! Jenelle is 4 1/2, but is starting to act like a 2 year old.

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In the first video, you really get a good idea of how well Jenelle is getting around with her "own way" of crawling. She is practically running for the vacuum!

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I tried to show how she turns around to look at the vacuum in this video - not the best shot and its shaky sometimes, but funny none the less. Enjoy!

Monday, March 19, 2007

Metabolic Test Results are Back!

Happy (be-lated) St. Patrick's Day!

We got a call from the metabolic specialist at CHOC last Friday and Jenelle's lab results are back. Just like we've heard before, everything was normal. The good news is that even with Jenelle being off her bi-Citra supplement for 5 days, her bi-carb levels were normal. The doctor said we could take her off the supplement if we wanted and give him a call should we see any returning symptoms of acidosis. We haven't made a decision on that yet. Sometimes when everything is working, its hard to take something away. The metabolic specialist felt our next best step would be wait for her Rhett Test results (which should be any day now) and then admit Jenelle in a few weeks for an MRI and lumbar puncture to test for the Neurotransmitter disease. Jenelle's last MRI was in early 2004, so it might be a good idea to see what her brain looks like. Jenelle's seizures are very stable right now - it seems the new increased meds are helping.

In other exciting news, Jenelle is really starting to use her hands! Last weekend, Jack and I were out running an errand, and Brett called me on my cell phone. Apparently while he was feeding her, Jenelle "reached" with her arm to pull her formula can closer to her more than once. Brett was really excited to see this, and we've noticed her tolerating her hands on things a lot more. And of course, Jenelle still loves the vacuum. I have the clean floors to prove it too!

Thank you to those of you who have made a donation or signed up for Team Jenelle's Avocados for this year's Freedom Walk. If you haven donated yet, please check it out and pass along the information to your friends and family! Thanks also for the continued prayers and support - I'll keep you posted!

Monday, March 12, 2007

Meeting a future special ed teacher!

Saturday afternoon, the family went to Barnes n Noble so Daddy could look at the latest baseball magazines to prepare for fantasy baseball. While he was in the periodicals, I took Jack and Jenelle to the Children's section. Almost immediately upon our arrival, Jack announced that he had to pee. You know, I never actually realized there were restrooms in Barnes N Noble... my visits are never that long I guess.

So I notice this little girl following us into the Ladies room - she was maybe 10 years old and she kept looking at Jenelle. I took all three kids into the disabled stall and we did out business. When we exited to wash our hands the little girl was waiting next to the paper towels. I didn't really notice her until she asked me a question.

Little Girl: "What is your daughter's name?"

Me: "Jenelle."

Little Girl: "Um, is she in special ed?" (her voice was very, very quiet and see seemed a little embarrassed to ask.) Suddenly, I realized this little girl had followed us into the restroom to ask me this question.

Me: "Why, yes she is! Jenelle has Epilepsy." (I added the Epilepsy part
because from the relieved look on the girl's face, I knew there would be more questions.)

Little Girl: "Oh, what is that?"

Me: "Well, Jenelle has seizures. And because she has so many seizures, it is hard for her brain to catch up, so she is mentally retarded."

Little Girl: "My neighbor has Downs Syndrome, and she is my friend. She goes to special ed too! Jenelle does not look mentally retarded; she is very beautiful."

Me: "Yes, thank you! Have you ever seen a Mic-key button?" I asked lifting up Jenelle's shirt.

Little Girl: "A what button?"

Me: "A mic-key button. We have to use this to feed Jenelle because she cannot chew."

Little Girl: "Oh, that is really cool that she can eat that way! I really want to be a special ed teacher when I grow up!"

Me: "That is awesome! You need a lot of patience, but it helps to be already interested like you are."

Little Girl: "Thanks. I am really interested in special ed. I want to help kids like my friend."

Me: "That's great. Thank you for asking about Jenelle. Sometimes people don't ask questions and like to stare at her instead. I'd much rather answer their questions instead of wishing they would ask about Jenelle."

Little Girl: "Really? You don't mind talking about it?"

Me: "Nope.

Little Girl: "I guess it is better than staring! Thanks! Jenelle is very beautiful!"

Me: "You're welcome!" And we left the ladies room.

Jack never asked why the little girl was asking questions, nor did he seem phased that she was so interested. I told Brett later about the the little girl, and we both seemed to see a difference in kids today and how we were raised. I'm not sure I would have been as brave to approach a mom and ask such questions. But then, when I was in school, we never really met disabled kids in school.


Fun on a Friday Night...

I wish we had taken a video clip. Jenelle's newest toy is the vacuum. She loves to "chase the vacuum" when we are using it. (Yes Mom, I do vacuum from time to time.) So on Friday night, around 9:00 p.m. I was vacuuming up a small mess Jack had made and Jenelle was entertaining herself by chasing the vacuum. Brett and I had to laugh because she is so cute when she does it. Sometimes I let her "catch" the vacuum too, and she likes to put her hand on it I guess to feel the vibrations. She also likes to look at the light.

Brett looked at me and said, "I bet you never expected this to be your Friday night entertainment back when you were 25!" Too true!

Thursday, March 08, 2007

The 2007 Epilepsy Freedom Walk!

$375. That is how close we came last year to meeting our team goal of $10,000. We were short, $375. Wouldn't it be amazing this year if we could make $10,375? ;)

The time has come to point out that the little link on my side bar for the 2007 Epilepsy Freedom Walk has been activated. If you click on it - it will link you to our team page. Or you could click here just as easily.

Our team is named "Jenelle's Avocados" because at our first Freedom Walk in 2004, a sweet little boy from Virginia joined our team and held a lemonade stand to raise money for Team Jenelle and the Freedom Walk. At the time he said wanted to be an "avocado" for Jenelle! What he really meant to say was that he wanted to be her "advocate" and now that he is much older, he gets a little embarrassed by this story - but we still love him and the name has stuck!

Jenelle has suffered with Epilepsy all of her 4 short years of life. Despite daily seizures, she continues to amaze us with new achievements and skills. Our life became a living hell when Jenelle was first diagnosed with seizures. Thankfully that time in our life is slowly becoming a blur - but we will never forget the support we got and continue to receive from the wonderful families involved in the Epilepsy Alliance of Orange County. This walk if their biggest fundraiser and we are honored to help support this worthy cause.

Please help us if you can: Join our team! Sign up as a virtual walker or join us if you are in the area - then send out an email to your family and friends asking for their support! Or please make a donation to Jenelle or one of our team members! And even if you can't donate your money or can't sign up for the team, please simply help us spread the word!

Thank you for your anticipated support!

Tuesday, March 06, 2007

Jenelle went bowling!

I found this photo in Jenelle's back pack last night. Her school had a field trip on Friday to go bowling - I was not there. As you know, Jenelle has delayed skills, and lately she is acting like your typical one year old where everything goes into the mouth. I'm sure she was licking the ball, not kissing it. She likes to lick things lately! I sure hope they used Lysol wipes - EEEW!