She's getting so big, so fast!

One word to describe Jenelle these past few months = Amazing.  A few weeks ago, I picked her up from Aunt Nicki's after a meeting and she was asleep on the floor.  As I looked down at her, instead of seeing the little girl I'm used to seeing, I couldn't believe how big she looked.  And before I could say it, Aunt Nicki said, "Gosh doesn't she look grown up like that?"  Now more than ever in her life, I want to make time stand still so I can soak up ever bit of her amazing transformation.

People say it all the time; kids grow up way too fast.  It's hard for me to believe that Jack has 3 more weeks in elementary school and will be headed to Middle School.  That I'm actually looking at adding another cell phones to our plan so he can have one.  I can't believe that this season of Little League is over, and that Jack has one year left.  Time goes by so fast.

In mid April, I saw a story in the Register about a Hummingbird web cam that was following a Momma Hummingbird named Emma, and her two eggs.  The eggs were just about to hatch, and I became obsessed with watching the camera feed.  I had it playing at work in the background of my computer screen and checked in periodically.  Although I missed the first egg hatching, I witnessed the birth of the second baby bird when it hatched during my lunch one day.  Within a weeks time, these babies went from tiny raisin like creatures to something that resembled a baby bird.  As you will see at the website, the nest itself is slightly bigger than a quarter, the babies the size of a penny, and the eggs the size of Tic-Tacs!  I kept in touch with this web cam, and their Facebook page for two weeks, and watched these birds transform from eggs to full grown Hummingbirds.  From birth to fledge, all in little over 21 days.  Time goes by so fast.

Jenelle's seizures have been consistent, and last night after her 3rd two minute grand mal I decided to page the on call doctor at UCLA to decide on a game plan.  The seizures had been hours apart, but it isn't like Jenelle to have so many in one day.  It is always nice to talk the situation over with the doctor so I don't second guess myself.  The on call doctor at UCLA agreed that we should consider using Diastat with the next seizure should she have one regardless of how long it goes.  Sometimes even half the dose of Diastat will give her the break she needs.  Luckily, I monitored Jenelle until putting her to bed and the rest of the evening and morning was uneventful.

At Jenelle's recent GI appointment, we found that Jenelle has gained 6 pounds in the last four months.  That is probably the culprit that is wreaking havoc on the seizure control we once had.  The on call doctor suggested I e-mail Dr. Shields on Tuesday to discuss increasing Jenelle's usual meds since we won't be seeing him until July.  Sounds like a solid plan to me!

In the next hour or so we'll be off to watch Jack's travel baseball team play a tournament in West Covina.  Hopefully it will be a good day for Jenelle, and the Tustin Rampage.  Enjoy your Memorial Day Weekend, and remember to reflect on it's true meaning.  Remember the men and women who have made the ultimate sacrifice in the name of our country, and for our freedom.  Thank you for the prayers and positive thoughts.  I'll keep you posted.

New Normal, New Habits

With Jenelle, we've always been adjusting to our "new normal" as we like to call it. Whenever Jenelle meets a new milestone, or has a set back, it changes our normal routine. And thus, we experience what we call a "new normal. Lately she has been really thriving, and our "new normal" gets easier and easier.

During my first week back to work, the new HR manager at my firm told me to start making "new habits" for myself. "New habits" to be healthier. I've kept those words in mind each day as I slowly adjust to the new schedule. My new habits include drinking more water, eating healthier, and listening to my body when it tells me it needs a nap. I can't help but compare the phrases "new normal" to "new habits." In many ways, they sound similar, but are very different. "New habits" can be made for yourself, while a "new normal" is a change you adjust to. I think the "new habits" are easier.

Like I said, Jenelle is really thriving, especially in her eating. She is really chewing more, and able to tolerate more foods. Her menu now includes pasta, beans and rice, chopped chicken or turkey and pizza! All of these items have to be cut into small pieces of course, but she is chewing and handling it very well. Instead of pureeing lots of veggies for her, I now give her mostly what we are having mixed up in a bowl. This weekend she also grabbed my fork and fed herself. She sure loves her food!

Jenelle is also adjusting real well to first grade. She enjoys using the adaptive switches to play computer games at school, and is being taught to use a switch that activates a voice that says "bathroom" whenever she has to go! Her progress has been amazing, and each day we are so very proud of her.

Jack is doing well in 3rd grade, and is very busy with football and Fall baseball. I hope we don't burn him out, but he sure does love his sports. If there can be one blessing to come from my having cancer, it was the opportunity I had to spend the summer with Jack at home while I was on disability. There are so many times that his needs are thrust to the back burner because of Jenelle. I think he really enjoyed our special outings together. He has matured so much this year, and is such a joy. I am so thankful.

Finally, some photos to share. The first is of Jack on his first day back to school. I think he's getting too old for photos at the desk.

This adorable photo was taken on Brett's birthday. The timing of Jenelle's smile was just perfect.

Here we have Jenelle all ready for her big brother's football game! It is really cool that Jack was #1 last year because now it is the perfect jersey for Jenelle to wear to the games.

Here is a photo of Jack as he fell asleep in the living room clutching his UCLA football. He plays till he drops!

And finally, a new hair update! A few weeks ago I went to my stylist, Chaz, to cut off the fuzz and add some color. I'm learning to style the curl and like the lighter color. I just hope it grows faster in time for my driver's license photo in January!

That's all for now. Thank you for the continued prayers! I'll keep you posted!

More Baby Proofing Needed...

Well, Jenelle gave us a little scare the other night when she locked herself into the bathroom. Until then, we had been getting by with closing doors to keep Jenelle out of certain places. The beauty of course in that is that Jenelle has learned to "turn" door knobs (and round ones at that!) Brett had to use a screwdriver to take the door knob off the door to get her out. A great milestone for sure, but now we definitely need to up the pace on the baby proofing.



Also, I wanted to share two beautiful candid photos taken of Jenelle and me by our cousin in law, Alain Chapuis at Easter this year. Thank you Alain, these photos are just priceless.





We hope you all have a wonderful 4th of July weekend. We are going to take it nice and easy and stay close to home. Enjoy!

Happy 6th Birthday Jenelle!

Six years ago today our sweet little girl made her way into the world and into our hearts. We are so blessed to have her in our lives, and for all that she has accomplished. Here are some recent photos to share.

This photo was taken Sunday afternoon on Jenelle's favorite ride at Disneyland - the tram! We went to Disneyland after participating in the CHOC Walk earlier that morning. Not the smile we got last year, but then again it had been a long day and she was worn out.

Here are the kids at the pumpkin patch last Saturday. Jenelle is wearing her new "chewelery", which is a device to help keep her from biting her arms and shirt. She really likes it and is using it appropriately.

Always ready to pose for the camera!

Last night, I made cup cakes for Jenelle to share with her classmates. Today the typical students will be in her class for inclusion. This is the first time I have ever made cup cakes for Jenelle... simply because with her improved eating skills, she can actually eat them now! Of course, Jenelle's favorite is chocolate.

And here is one of the family at the crack of dawn watching the sun rise shortly before the beginning of the CHOC/Disneyland Walk in the park last Sunday. Thanks to all who sponsored our team, and to the family for being a good sport to wake up at 5:30!

Happy Birthday Princess Boo!

We love you!

"LA LA LA LA LA LA LA!"

Last night, Brett and I were sitting at our dining room table chatting about the events of the day, when Jenelle walked up to the table, put her hands down on the table, looked at her Daddy and said, "la la la la la la la la la!"

We stopped talking mid sentence. I think my mouth dropped open. We stared at Jenelle and then looked at each other in disbelief. And then as if sensing our doubt, she did it again... and again!

Brett thinks it sounded more like a "ya ya ya ya ya ya" and I thought it had more of a "la" sound. Either way, she was definitely vocalizing. I immediately went to grab the camera to capture it on video and unfortunately stage fright took over. I am determined now however to catch it on video and will share it all with you when I do! Brett gave her the biggest hug and said, "Sweetie, we didn't know you had so much to say!" Which of course made her giggle.

Sometimes I wonder if Jenelle reads my updates as I just recently posted about my concern as to whether Jenelle will ever find spoke language. Or maybe Dr. Shields (who is the best pediatric neurologist in the world) is right and that given a little more time, Jenelle will continue to amaze us with her continued progress and speech for Jenelle is not a lost cause! Or maybe all of you are sending up the right prayers for our girl (keep it coming!) No matter what the reason, we will gladly take anything we can get from Jenelle.

As Jenelle's 6th birthday approaches, I can't help but look back on all that we lost with Jenelle because of the inadequacies of her first neurologist. What more could she be doing if we hadn't lost all that time searching for answers and jumping through hoops?

It took three years to see her smile, five years to see her walk, and now almost six years to finally hear her voice. A beautiful, angelic, sweet little voice trying desperately to say something to her Daddy.

Thank you for the thoughts and prayers - please keep them coming! ;)