Disneyland with friends

There are not many things that are more magical than Disney at the holidays The entire park is made over with Christmas decorations. It is quite amazing! :) What is more amazing is getting to go enjoy it with good friends with awesome kids. We spent the day at Disneyland yesterday with Jaxson and family, as well as sweet Ella's big sisters. Ella was busy getting her g-tube placed in the morning, so her Mom came later to meet us at the park. It was a fantastic day. I am absolutely in LOVE with Arina! If her daddy didn't have my home address in his GPS, I might have stuck her in my pocket and ran home with her! ;)

Emily, getting ready to ride Toy Store. The 3D glasses lasted on her face only long enough for me to take the picture before she threw them. :)

Sweet Jaxson! He lounged in my arms for 45 minutes while Lacey and Ray were getting lunch. I just love to snuggle this little guy.

Jacob is in love with Arina. He has told us for about two years that "We need a little girl with Down Syndrome". He is now convinced of it after playing with Arina!

Arina was all smiles for Jacob.

Carter pushed Emily's wheelchair most of the day. It was really sweet!

Emily's dad getting some Arina love. She was fascinated with his facial hair.

Emily loves Small World. She could ride it over and over and over again!

Jaxson seemed to like it too. :)

It was a fantastic day. It was cold, which is my favorite kind of Disneyland day. Much better than hot. :) Lacey, thanks for letting us spend the day with you. Thank you for letting us love on Arina and letting my snuggle with Jax. Your boys are awesome. And Denise, I'm glad your girls were able to come and hang out with all of our boys! :) I am so relieved that Ella's surgery went well and I hope you guys are on the road to home today!! What a fantastic Thanksgiving you will have. :)

Nothing new, just some pictures

This has been a quiet week, as we recover from the hospital stay and prepare for Thanksgiving. The kids have all week off of school next week, and on Monday we are meeting up with Lacey and family. We are SO excited to meet Arina!!! The plan is to go to Disneyland with them, but the news just said it's supposed to rain ... not sure what we'll do. All I know is that I cannot WAIT to hold Arina! I think Jacob is as excited as I am. He has a slight obsession with kids with Down Syndrome. He loves them. He volunteers in the class at his school that is mostly kids with DS. He wants "a sister like Arina, SO bad!"

Nothing much is happening this week. Jacob has tennis lessons and he is doing amazing. It is incredible to watch this group of 10 years really play tennis! Not just hit the ball and run around, but really PLAY. It's awesome! It's hard to get pictures because lessons are right at sunset so my camera hates the lighting. But here are some. (Check out his coach, Rafael. I think I may have a Mom Crush on him!)






And of course, the Princess. She is doing well this week. She's napping a lot more than normal and having quite a few seizures, but nothing major.




We are all getting excited because my sister is having her first baby! A little girl, and she's due at Thanksgiving. So sometime in the near future there will be an adorable little baby to cuddle on. I can't wait!! :)

I hope you are all doing well. Lots of stuff going on for the holidays and school and just life. Speaking of which, the dryer is buzzing at me. I better go!

Universal Child - have you heard this song?

A friend emailed me a link to this song by Annie Lennox called Universal Child. It guarantee it will bring you to tears. It is SO point on for our kids! Here are the lyrics ...

How many mountains must you face before you learn to climb.
I'm gonna give you what it takes, my universal child.

I'm gonna try to find a way to keep you safe from harm.
I'm gonna be a special place, a shelter from the storm.
And I can see you, your everywhere, your portrait fills the sky.
I'm gonna wrap my arms around you, my universal child.

And when I look into your eyes, so innocent and pure.
I see the shadow of the things that you've had to endure.
I see the tracks of every tear that ran ran down your face.
I see the hurt, I see the pain, I see the human race.
I can feel you, your everywhere, shining like the sun.
And I wished to god that kids like you could be like everyone.

How many tumbles must it take before you learn to fly.
I'm going to help you spread your wings, my universal child.

I can feel you everywhere shining like the sun.
And I wished to god that kids like you could be like everyone.
And I wished to god that kids like you could be like everyone.

Thank you

I love blogging. I love Facebook. I love that people I have never met truly care about my Emily. I love that we can all talk and offer advice, suggestion, and love to one another. It's amazing! :)

I wanted to answer a few things asked in comments lately.

The ketogenic diet has been suggested to me many times now, and I wish we could try it. The neurologist last week even said it would be his number one suggestion for Emily. Unfortunately, she has an SCAD Deficiency. This is a metabolic disorder that limits the amount of fat she can have in her food. Her diet is a very high protein and very low fat diet. She can't have more than 5% fat daily or her metabolic disorder kicks in and things go wonky. This unfortunately is the complete opposite of the ketogenic diet, so we are unable to try it.

I get asked a lot about Emily's blenderized diet as well. She gets a small amount of formula overnight on a slow drip, which she has to have because of the SCAD Deficiency mentioned above. She cannot go more than 3 hours without nutrition or her blood sugar plummets. During the day though she gets a blenderized diet through her g-tube. Again it is a specific recipe because of her SCAD, and I have to carefully measure everything that she gets. She gets fruit, veggies, and meat every day though. I love making her food, it feels so normal! :)

Now that we know what is and isn't a seizure, it is glaringly obvious how much Emily is really seizing. It's very disheartening. No wonder she is at a standstill developmentally - her brain is constantly recovering from seizures! They are short and fast seizures but nonetheless they are abnormal.

That's the update for now. Not much else is happening. Jacob's school has a Jog-A-Thon this Wednesday, and as PTO President it is my deal. My poor (plantar fascitis affected) feet will be sore for sure! I go to the podiatrist tomorrow, so we'll see what suggestions he has.

Do you have any other questions? I know there are some people who are new to our blog and may not be "caught up" on Emily. Is there anything you have always wondered? Go ahead and ask! :)

The big haircut

Jacob hasn't cut his hair since before school started last year. September 2009! It is gorgeous, but as anyone with curly hair knows it is a pain in the butt to keep neat. I got tired of nagging him to brush it out and clean it up before school. I told him he got one more chance and we were cutting it. He decided he was ready, so he and Dad went off today for buzz cuts. :) Doesn't he look so young now? His hair sure did make him look older. Ah well .... he is clean cut again and excited to go to school tomorrow. He is sure all the girls will want to feel his head - that prickly soft hair with a buzz cut is so fun. :)

Home from the hospital with some answers

We were inpatient for 4 days of continuous VEEG testing, and a PET scan. They end result is that Emily is having myoclonic and atonic seizures all day, every day. She has them so often that the neuro said "There's one. There's one. There's one" in between sentences while talking to us. Ugh.

There is no focal point for these seizures, they come from all over her brain. We didn't manage to capture any tonic/clonic seizures, so we don't know if the big ones have a focal point or not, but it doesn't really matter. We wouldn't put her through a resection or any other epilepsy brain surgery to try and control some of them, when she has so many others. The thought is that with so many small seizures, she is bound to have break-through big ones. So ... that's it. I am relieved she doesn't need brain surgery, but not so happy with the thought of her having seizures forever.

The biggest thing we got accomplished during this hospital stay was the actual diagnosis of Lennox-Gastaut Syndrome. It was mentioned to us in her last hospital stay, but wasn't verified. It was thought to be a casual thing thrown at her with no proof. Now it is official. Her EEG shows the classic slow spike-wave pattern of LGS.

We are weaning her off Trileptal, because it can INCREASE myoclonic and atonic seizures in LGS patients. Hello - we thought we were dealing with LGS a while ago, why did we get put on this med? We never had atonic seizures until we started it. So there is a possibility that some of her small seizures may actually decrease, as we wean this med.

If she continues to have seizures or has more when we wean the Trileptal, then we are going to try her on Felbatol. If that doesn't help, there was another med mentioned but I can't remember the name of it. The problem is that it is not FDA approved. You have to get it from a pharmacy in New York that imports it to the US, and pay cash for it. Insurance won't cover it. I don't even remember what it's called, but financially this is not an option for us. So if we need a new med, I pray that the Felbatol helps.

As I am typing this, she had four atonic seizures. She literally just fell over while sitting up and watching TV. It's heart breaking. I hate seizures.

At least we have an answer to this portion of the Emily Puzzle. We are still waiting on lab work that was sent out testing for Tuberous Sclerosis, Cornelia deLange Syndrome, and the SCN1 gene.

Heading to the hospital in the morning ....

I am nervous and excited and dreading this admission. I am excited because finally it seems like we might get some answers about Emily's seizures and what we can do to stop them. I am nervous because the neuro says we will be backing off and then cutting all three seizure meds probably, in order to get her to seize a lot and get good information. He told me that, with a warning that cutting all three seizure meds very well may put her into status but it will be a controlled environment or something, and that's okay. Ugh. It makes me sick just thinking about it.

We have to be there at 10am tomorrow. We are staying anywhere from 1-5 nights. Which means I have to pack for five nights, since it's far from home. My husband can't come because he has to work every day, and take care of Jacob. So I will be really alone there. I am packing LOTS of snacks and toys and movies and clothes and stuff. I don't know how I'll even get all our stuff in the hospital in one trip!

So ... I will update as I can. I have heard there is wireless access in the hospital, so I am taking my laptop. Hopefully I can get online at some point. I will at least be able to Facebook from my phone, if nothing else.

Before we go, I had to share these two pictures. Emily and I went to CHOC last week to visit sweet Ella, who is there for her fourth round of chemo. She evidently hates when babies cry or scream. Well, Emily screeches when she's excited lately. So we got her laughing while they were both sitting in the crib, and Emily started screeching .... which led to Ella crying! Poor thing. It was funny and sad at the same time.

I will keep you all updated! Pray that Emily seizes enough for them to get good EEG information without anything severe needing to happen. Pray that her MRI and PET scan give them good mapping of her little brain. Pray that we leave there with some sort of plan as to what to do with Emily's seizures!!