Recently in Josie Category

I am super stoked to announce that Josephine took her last dose of Clobazam yesterday!!  After 16 weeks of weaning her 1 mg per day with no negative side effects or break through seizures, she is now on two medications rather than three.

To celebrate, we took the girls down to Frank Kitts Park for a bungy jump and gelato!  Josie loved going high and at the very end of her time, the attendant asked if she'd like to go "Really high?", she agreed without hesitation.  As she soared 20 feet in the air, I broke into a cold sweat.  All I could hear was her delighted laughter ringing through the park.  The child has no fear.

Thanks to everyone for supporting us through this.  We are so lucky to have good news to share and hope the trend continues.

We are super happy to spread the good news that Josie is continuing with her seizure freedom!  

She had an EEG to monitor her brain waves and the neurologist has decided she is ready to start weaning off one of her medications!  Yay!  It's a long process and will take at least 16 weeks to get her off of the medicine completely but we are just so happy that she is stable enough for this to even be a consideration.

She's doing great and developing normally.  We love her heaps!

I escaped last weekend with two wonderful friends to a spa in Martinborough, the wine region near Wellington. It was wonderful, relaxing, healing and full of laughter. All made even better by the fact that Jake had an entire weekend off (GASP!) and spent it with the girls so I could get away, anxiety free.

Everyone had a great time free of separation anxiety and full of Star Wars! I came back to a Star Wars focused family. Many discussions were being had about "RDD2", "the guy in the tree with the pointy ears", "the two guys fighting with flashlights", and "the walking guys getting closer and CLOSER AND CLOSER!".

Jake had apparently been searching around town to get the girls some action figures that would work for the girls. R2D2 was specifically being sought. Sadly, we couldn't find him anywhere. Josie picked out a Clone Wars cell phone which I think is totally lame. Not one authentic Star Wars sound effect included! Josie however, is in love with it! Sophie scored a C3PO figure and instantly made a bed for him in a paua shell, complete with tissue pillow and blanket. She took him to nap with her, happy as a clam, er, paua. ;) When she woke up, she staggered out, forgetting, I think, that she only had her pull up on. This is what was written on her leg.

 

In case you can't make it out it says "Sophie loves C3PO". I called Jake and we both had a good chuckle about it.  

We've been sick and stuck inside these school holidays so among other things, we've been crafting. Here's some of our handy work.


This owl was from Kids Craft Weekly. Sophie had a great time putting him all together.

  The bags for our owls were a little too long so we hacked it off and decided to make a crown.  Josie enjoyed gluing the jewels on.


I tried to tie a little letter lesson in to our crafts. I asked Sophie if she knew any other words that started with O. I love the two she came up with. One is our dear friend, the other a veggie she's never tasted. 

And, um, that's my handwriting and art skills.


Here's the crown being modeled. PS. I got this smile by telling her NOT to smile.

  We repeated the system again the next day with stellar results.


A little princess.

Again, my favorite part are the words Sophie came up with. Sadly, I had to coax her into the last "M" word.

We've been nervous to post this news because we fear the bad news so much that we don't want to share the good news.  We're screwed up.

We are very, very happy to announce that Josie has been seizure free for over two months now!!!!!!  There aren't enough exclamation marks to convey our excitement!!!!!  In further detail, she has only had 5 seizures in the last three months.  It's such a huge change from the days of 50+ per day. This wonderful improvement happened after we added a third medication, Lamictal and tweaked the dosages of her first two meds.  She is clear and has been developing in enormous leaps.  She still has some side effects from the medications like shakiness, aggravation, and possible small twitches at night while she sleeps.  

We see the neurologist at the end of August and will see what the plan is with her current medications.  Last time we spoke, she wanted to try to wean her off the first medication, Clobazam, as it is usually only good for short term treatment.  We're nervous about changing the "magic formula" in fear that her seizures will return.  We'll see.  

Thanks to everyone for your constant support.  Josie is a very loved little girl.

Today was Josie's first day of Kindy (preschool for those of you in the States). Due to a wonderful arrangement at Sophie's new Kindy, they allow younger siblings to come two mornings a week to the session with their older sibling rather than making them take the afternoon class.

Josie was excited and a little anxious it seemed. Sophie was bouncing off the walls. She couldn't wait to have her sister at her Kindy!
 


Jake stayed home so we could all go in together. Josie settled right in as she's been to the school before when we were helping Sophie settle in. We observed her from near by and were amazed at how much we can let go now that her seizures are under control. She hung out in the play kitchen for a bit then decided to do some painting. Then she was off to the outdoors and straight to the woodworking bench. This is something I cannot believe I've become accustomed to here. It's a full on workbench with nails, hammers, drills, vices etc. that the kids are allowed to make things at. Josie's teacher Mavis sensed we were nervous Nellies and stepped in to assist Josie with the hammering.  Here's and action shot and a finished product shot.  And yes, that is a power drill that Josie operated all by herself. 

 
 
After that, Jake and I decided to head out and test the waters to see how Josie did without us there. We had to round both of them up to say goodbye. Josie just said "Bye" and turned around to go find something else to do. I dragged her back and made her give me a hug. I know she might not, but I need it!
 
Then, I got to experience this.

 

Back off ladies! I've been waiting 4 years to have a quiet coffee out with my hubby.

I headed back to get Josie 45 minutes early. She was an absolute mess. I mean, this kid had obviously been into every single dirty thing she could find. Her hair was falling out, she had new, dirty pants on, paint on her coat, snot on her face, dirt pressed into her forehead, I-don't-know-what on her shirt sleeves. And she was absolutely confident and sure of herself. She was happy I was there but kept right on doing what she was doing.

It's our beautiful little girl's 3rd birthday today. She's never really had a shell to come out of but her personality has blossomed this year. She's continued with her severe independence but has started to develop a bit of patience. She loves music and will sing, dance and play instruments like there's no one watching.  She has a flair for drama and talking about how "wonuful" everything is.

We think so too. Happy Birthday Josie Grace, we love you!

The school system here is a quarterly set up.  It really reminds me of the year-round system we had in the states.  The kids go for a term then have about a 2 week break before heading back for the next term.  Sophie is currently on holiday, as they call it here, and Josie and I have really enjoyed having her home.  More Josie than me, and you may think I sound cold but hey, I can't compete with 41 four year olds.  I just don't have it in me.  Josie on the other hand is more than happy to try and keep her sisters attention all day long.  

Sophie has gained enough independence that she's fairly self entertained.  She's been trying to manage Josie into doing everything she wants her to do.  And also getting her to do it the way she wants her to.  What can I say, the girl knows what she wants.  Josie has been a good sport and is the perfect counter to Sophie's bossiness.  If Josie doesn't want to do it the way Sophie is instructing, she just won't.  Does it sound like a recipe for disaster?  Surprisingly, it works out 99% of the time.  The girls have really started playing well together.  Both coming up with ideas and having equal parts in the game.  It's amazing how long they can be entertained by seeing which things they can pull with a jump rope.  

I took the girls to a play last week as something to do.  It was really funny how Sophie was curled up on my lap during the parts with the villain while Josie joined the other kids and shouted at him.  The story was quite cute and at the end the cast came into the audience and asked the kids if they'd like to dance.  The king asked Josie and Snow White asked Sophie.  Their faces were priceless.  Josie looked like the happiest girl on earth and couldn't wait to come over and tell me about her dance.  All afternoon they reenacted different scenes from the play with each other.

It's been nice to have them with each other and give them a chance to reconnect.  I think Josie really misses Soph when she is at school.  Oh, today I caught them kissing for like 10 seconds.  Sophie was saying, "No Jose, let's kiss for a long time like this (press mouth to Josies face)".  It was pretty cute.

My last visit to the pediatrician with Josie was frustrating. Mostly because I hoped that we could get some answers or make some progress. Josie had been very lethargic, not sleepy but would just want to sit and stare or watch tv.  I'd offer to let her play or paint or do playdough, anything but she wasn't able to focus.  So when the pediatrician asked how she was, I let him know that she wasn't very responsive etc, to which he replied "but other than that she's well?".  I wanted to strangle him.  What I wanted to say was "NO she's not effing well!  She shouldn't be like this!"  Instead, I just started bawling.

I choked through the tears to ask my questions for him to pass on to the neurologist since our two month check up with her turned out to be a six month wait.  There was no way I could wait six months without talking to her.  First off, Josie's new drug would be at the maximum dose two months before our appt and I had no plan B.  We needed to know what we would try next if the lamotrigine didn't work.  And I hate to say it but I feel like all the Pediatrician does is weigh Josie and then play messenger for the neurologist.  Anyhow, I left feeling deflated and like the visit was pointless.

About a week later, we received a call around 6:30 pm from the neurologist.  "Hi this is Lynette."  It was like the stress melted. Did I mention that I LOVE this woman? I rehashed my concerns and she took them as valid, asked us to reduce her epilim but warned us that we may see increased seizures but a clearer child.  Which is exactly what happened.  The day after we brought the epilim down, Josie's seizure count jumped from 7 to 23 (and those are just what we saw) but she was talkative and interested in playing and reading books.  The neurologist also let us know that our next step would be either to try a different drug or the ketogenic diet.  She recommended the diet as the probability of drugs being effective decreases significantly if the first three haven't worked.  Plus adding a fourth drug then tweaking and weaning and adding the diet would take lots of time and possibly a big toll on Josie.  The timing of the diet will depend on the hospital nutritionists' schedule but we'll cross that bridge when we get there.

The neurologist called a week later and gave me some more instructions on tweaking her first medication Clobazam.  We're trying to ramp that up every four days to see if it has any effect.  If not, we'll just ramp it back down.  So far, Josie just seems more aggravated with sporadic seizure counts.  She'll have 5 one day and then 20 the next.  Some days she has no issues with you touching her or giving her a bath and other days I am expecting Child Services to come busting through the door.  When she has these sensory issues she can't stand to have her hands or face wiped after eating.  Or if you have her in the tub and want to wash her hair she just keeps screaming "Don't do that to me!  Stop touching me!".  She won't wash herself either and it if it sounds like a painful cycle, it is!  It's not consistent enough to even know when it's going to happen either.  She'll be all excited to get in the tub and happy with the water but once it's time to touch her she freaks.

She's also starting to push her boundaries with us (and I can't blame her).  So far, she's been very good about not walking on the hard floors without asking us to help her.  Most of the time she stands at the edge of the floor on the carpeting and says "Mommy, I waiting for you!".  Lately, she sees how far out she can get before you will notice and reset the boundary.  We've been trying to give her a little more independence since her full drops have almost disappeared, however, we still aren't comfortable with her walking around in the kitchen.

Yesterday we took a walk over to the pharmacy and Josie got to ride her three wheeler while Sophie rode her scooter.  I think it was just what Josie needed.  She was independent, got to wear her helmet just like her big sister and had some great physical activity.  We did a repeat of the walk today and added a trip around the block for good measure.  She seems to be mentally developing at a normal rate from what we can tell.  Singing her ABC's, counting, picking out her letters when she sees them.

I guess what it boils down to is most of the time she seems like a normal almost 3 year old.  What we struggle with is the constant possibility of a drop seizure.  Boy, that was a little sentence compared to the fear and horrible potential it carries.

Just a quick update to let you know Josie is on her fourth week of Lamotrigine with no apparent reduction in her seizures yet (which was expected). She seems to be struggling more with absence seizures, which leave her unresponsive and quiet roughly a third of the time. Lately she has had an increase in drops again as well.

Also expected, the lamotrigine seems to bring out her frustrations more (not that she doesn't have a lot to be frustrated by!): she'll rage and pull her hair now following a seizure, where before she would have cried or just been upset. At the beach she will roar and throw sand endlessly, which hopefully is therapeutic for her.

Aside from these times of silence or rage she is a very happy little girl, prone to giggling and always up for making her sister (and us) laugh hysterically. The two of them together are definitely "trouble" in the best way: thank heaven for our little girls!