Thursday, December 2, 2010

Christmas spirits

For some reason I'm having a hard time getting into the Christmas spirit. I know life is busy right now, but we haven't put our tree up, and I haven't bought a single Christmas present! Now I'm getting a little panicky because we are into December and I'm way behind! .
Maybe its that we don't really know whats going on with Jax. We are weaning his ketogenic diet right now, and I've noticed a couple of seizures, and something new and disturbing. I'll try to explain...when Jaxson came out of the medically induced coma and we started the diet, his seizures were pretty controlled. But he had this new movement, it was just constant movement. Almost like he was high or something. He wouldn't sleep at all unless he was drugged! Thats when I first learned of melatonin. Neuro called it a movement disorder, and that it could happen when you take all the seizures away that he was having. It did slowly get better over time, but it seems like thats kind of what he's doing now. He goes to sleep ok, usually, but he is waking up at night, and he hasn't done that since starting the vent. I also have been watching his movement that seems to be pretty constant, and he's grinding his teeth so hard it has to hurt! It doesn't make sense that this would happen when weaning the diet, but I have no other idea's. I'm going to call the nutritionist today and see if we should restart the full diet and see if it subsides. If it does, he may be on this diet for life. Its not a huge deal, besides measuring food and mixing it at a specific temperature. But it makes their cholesterol high, and it doesn't help his lungs because it causes the fatty fluid to leak into his lung spaces.
Daddy takes the princess for a sleep study tonight. I'm very interested to see what that shows!
Although the spirit isn't as strong for me this year, at Disneyland, it was amazing. I got very excited about the beautiful Christmas decorations everywhere!
Small World was stunning!

Main street was beautiful as well, with the huge Christmas tree at the end!

The words, it speaks for itself!

The man, his mouse, and the beautiful snow covered castle!

Oh the Haunted Mansion with its Nightmare before Christmas theme! Even the boys were amazed. The whole ride is different. We went on it at least 4 times!

Our large, fun group. Ella's sisters, Jake and Emily, and our boys with Arina!

We went to see our Ella Sunday night. We haven't seen her since she started chemo. She wasn't too excited at first to see her new friend.

But she warmed up and soon was giving kisses,

and showing Arina her room,

and her DVD player

It was a long day and everyone was out for the count!


Anonymous said...

I am loving these beautiful, precious pictures. Praying all goes well with Arina's sleep study. Praying for Jaxson as always too - I am sure it is so frustrating to not know what is going on! Hey, about Christmas - don't panic yet - it's only Dec
2nd. I hate to shop so I love, love, love to do most of my shopping on the internet - they seem to have great deals this year too!!

Reagan Leigh said...

The movements...that's exactly what Reagan started doing right as her seizures became controlled. It's called chorea athetosis. Sometimes I wonder if it's not worse than seizures because it keeps her up and awake (and moving nonstop) for days...but then I come back to reality and realize that just about anything is better than nonstop seizures!! Hope getting back on the diet helps Jax!

Denise said...

That last picture of Carter sleeping with Jax is simply priceless. I LOVE how good your boys are with him and WOW, what great brothers they are to their new sister too. You and Ray have definitely raised them right. Sorry you are having a hard time getting going with Christmas...but, hello, I think you have been just a tad bit busy lately. Cut yourself a break!!

Corinne Judy Smith said...

Great pictures! I haven't decorated for Christmas yet either, but you'll soon get into it because you won't be able to help yourself. I'm so glad you had such a great time in Disneyland. Hope you get some answers on Jax and Arina.

The VW's said...

Love that last picture!

When you are busy it's difficult to get into the spirit, and remember you just got back from are probably still experiencing vacation withdrawl/letdown! Plus, the spirit of Christmas doesn't have to be about decorations....being with your wonderful family and focusing on the true meaning of Christmas is all you really need anyway! You'll get there!

Hope you can figure Mr. Jax out! It must be hard to see this though! Praying these movements go away! Hugs!!!

Kristin said...

I love Disneyland at Christmas. And love that last picture of sleeping boys! I actually think I finished my shopping TODAY!!!! Stocking stuffers and everything. Never have I finished this early. We simplified a lot this year. And I let Piper decorate the tree all by herself. I can't really do too many decorations anyway or Max will destroy them.
Can't wait to see what the sleep study tells :)

Emily said...

I LOVE Disneyland this time of year! So beautiful! Sorry you have so much going on right now... I am having a hard time realizing that it is December. No Christmas shopping done here. Hang in there my friend!

Holly W said...

What a gorgeous castle! I love the last pic, how adorable!
Hoping you figure out what's going on with Jax..what a tough cookie he is!!

Heather said...

Carter and Jax .. that is my absolute favorite picture!

Hoping for some answers with Jax.Hate that you worry about him.

As for Christmas,it will all come together,it always does.And sometimes,that spirit comes to you in the most unexpected moments.

Go easy on yourself friend.your plate is full.In fact,overflowing.

Anonymous said...

I know you have a lot going on but you always seem to be so down maybe you should try figuring out something that is just mommy time and regain your spirits.

Melissa said...

I'm glad you had a good visit. Disney looks beautiful this time of year!

Mama Mason-Mann said...

Love all the pictures! It's so nice to get a glimpse into your world. Thanks for sharing with us.

I hope the movements get resolved soon so you can rest easier. And I hope the sleep study went well. I hope they were both able to get some sleep!!! Chloe's had many, so we're familiar with the drill. I'll be waiting to hear the results!

Michelle and Sean said...

Your trip to Disney looks like a lot of fun!! I so glad that Arina had a good time!

I'm just getting caught up. Jaxsons year was a busy one!! He is one tough little guy! Happy belated Birthday!!