Summer break is almost over

This is our last week of summer break.  Its been a nice 5 weeks.  We’ve had a nice birthday celebration (simple, no fuss), a trip to the lake with lots of swimming, fun at home, playdate with  friend.

The most amazing thing this summer break has been how her skills have been progressing. Each day she amazes me more and more how much I see her use her left hand.  Walking around holding a toy in her left hand (and not her right).   Using her left hand to hold a cup. Speaking of cups, we rejoice that sippy cups are gone!  I’ve kept a couple around to have when going in the car and I need to give her something to drink.  She still needs the spill proof valve when someone isn’t right there with her.  Otherwise its all big kid cups.  Open cups, cups with straws, cute kiddie thermos cups.  The thermos cups are our next step, since when out and about you may want a cup you can have a good lid you can close.  The open cup is still a learning process.  She is prone to tipping the cup to much and giving herself an unwanted bath.  Someone needs to have their hands right there to help her guide the cup.

Yesterday she actually enjoyed finger painting.  This is a girl who has always balked at arts and crafts activities.  We’ve still got a long way to go on coloring.  But I have the “right” crayons now.  They are these super cool crayons called “Crayon Rocks”.  Now I know you may think that you can easily melt crayons into smaller “rocks” to hold.  Yet that isn’t what makes these crayons so great.  They are awesome because of how easily they write on the paper.  Such light touch and you have coloring.  It is perfect for kids who may rake the crayon across the page and not understand applying pressure to the crayon.

Seizure control has fallen victim to the facts of LGS (her seizure disorder).  Seizures are hard to treat, and often are resistant to medications.  A medication may work for a while then stop.  We’re seeing this now with Onfi.  Heartbreaking, but all the while I always feared we were simply in a honeymoon period.  I was determined to enjoy it while it lasted. Nothing more, nothing less.   Onward and upward to the next option I guess.

We went to the lake over summer break.  I worked out a new situation with some floats for Becca and she really enjoyed some new freedom in the water.  As usual she loved the boat rides.

In a month my brother and his family come to visit.  I haven’t seen them in about 8 years.  Yep, that means they have never met Rebecca.  I’m so looking forward to seeing them all.  My nephews and nieces are all growing up!

Well, I reckon that is about everything for the past 5 or 6 weeks since my last update.


Status Quo?

We’ve made it through a week and a half of summer break (aka intercession for kids in year round school like Becca).
I wish she would get the memo that with no school she can sleep in and take naps at her leisure. Neither of which is she doing lately. Don’t get me wrong, I’m glad the seizure monster isn’t making her have the need to sleep all day. However many parents know, the child who does not nap as they should turns into some kind of scary monster around diner time. I always know the days Becca didn’t nap at school. The cranky, whiny Becca comes out around 5pm. Couple this with her then not wanting to go to bed at her usual time, which for her is still 7pm. She has always self regulated herself to be ready for bed at that time. I remember as a baby she was hilarious, she could be WIDE awake at 6:45, even 6:55. But no sooner than the clock hit 7pm and she was laying down and going to sleep. It was always the strangest thing to see, but her internal rhythms had very accurate time telling abilities.
As I type, “She who does not sleep” laid down on the floor for one of her famous cat naps. She is also known for just laying down and taking a 5-10 minute nap and waking up ready to go. She is super cute these days because she now “gets” the concept of a blanket. So she will pull a nearby blanket over her, even spare clothing laying nearby will do as a blanket.

We’re muddling through this intercession. She isn’t driving me crazy (yet) with her need to get into anything and everything she isn’t supposed to get into. I guarantee you that by July 18th I will be more than ready to deposit her at Easley Elementary school.

Seizures are status-quo. She has good days and not so good days. The not so good days remain much better than last month. However we are still seeing more not-so good days than we were before we messed with her medications and the supplements. I still feel frustrated and hopeless with the Ketogenic diet. I still need to start deciding is it worth it all.

You may or may not notice I added one new thing to our blog. A button, along with the “about us” (or whatever I renamed it to) there is now a “Becca’s history”. I created a separate page that has all of her old Caringbridge journal entries. As of right now they are in reverse chronological order with no fancy formatting. However that may change if I ever get whim to do so. (so be warned if you start reading the order may spontaneously change in the next month or so).

Anyhow I think that is about all to report on Becca.
oh wait – I know. In honor of her birthday she now has TWO Mylar balloons to play with right now. She is so incredibly happy.