Tuesday, November 30, 2010

Seizures on the bus

Emily has had a rough week so far seizure wise. She hasn't had any big seizures thank goodness, but it seems like non-stop small ones. Yesterday after she left school in the afternoon she had a seizure on the bus. Her head dropped down and didn't come back up. The bus driver pulled over and checked on her. She was breathing fine, but was completely unresponsive. She called dispatch and they said since Emily was breathing okay to take her back to school. When they got there her health tech came out and checked on her. She said her breathing was normal and her pulse was fine, although she was still nonresponsive. They decided it was safe to take her home on the bus, so she came home.

The bus driver was freaked out, and I guess she had a seizure on the morning bus ride as well yesterday. So we have two freaked out bus drivers. I totally understand, they can't be worrying about Emily's seizures while driving. It's not safe for them to constantly be looking in their rear view mirrors at her to make sure she's okay.

Emily has never had an aide on the bus, and she's ridden since the day she turned 3 years old. I called the school district this morning and spoke with the head of special education. Getting an aide on the bus is a long process but she is going to try and rush it through as urgent. Hopefully it won't take too long.

In light of the increase in seizures, I called to check on our UCLA follow-up appointment. When we were discharged on Nov. 10th, we were told to see our neuro in 2 months. Our appointment is set for Feb. 28th! That is NOT 2 months, that's almost 4 months! I was pissed when the lady was talking to me on the phone today. I told her that Emily is having more seizures than normal, as we wean the Trileptal. She is on Keppra and a small dose of Trileptal, and that's it. The Mysoline was weaned off when we were inpatient. We are supposed to start Felbatol or something, but I have no orders. We were supposed to get them at the 2 month appt ... which is now a four month appointment.

Her response was "Well, I recommend you email the doctor directly then and see what he says. I can't get you in any sooner".

Ugh. Her last comment was that perhaps I need to just take Emily to the UCLA emergency room and that way she will be admitted and see immediately. That is NOT a fun idea!

She seems to have a lot more seizures in her sleep now too. Almost every night she wakes up after 3 hours or so having a seizure. She continues to twitch for another hour or two before she goes back to sleep. This is not a great pattern! We are all exhausted, and it makes me wonder how much she seizes all night long.

I wish we could get in to the neuro quicker! Wish me luck that my email to him gets us somewhere.

Sunday, November 28, 2010

Christmas Cards

Ever since having kids, the only Christmas cards we send are photo cards. I imagine that if I sent my parents or in-laws a regular old holiday card with no photos, there would an uprising! :) It's always an interesting photo shoot while I try to get both kids smiling and looking cute, but the cards are worth it. Each one goes in my scrapbook for that year as well, as a lasting memory. I even have a couple of the best ones framed in the hallway with the other pictures of the kids!

I am really loving the card options at Shutterfly this year. This one in particular has my attention.

You can check out all their Christmas card options HERE.
They have a lot of other fabulous photo options as well. What Grandparent wouldn't LOVE one of these great calendars?

Look at the beautiful simplicity of this card - it's awesome. Any parent can relate to the pure JOY of raising a child, but when your child has special needs, it's an even more emotional journey.

You can find this card and other holiday cards at Shutterfly, ready for your personalization.
Shutterfly has a great promotion this year for bloggers! If you have a blog and would like to do a write-up about their fantastic holiday cards, you can get a code for 50 free photo cards. What a great deal! We help them spread the word, and they help us spread the cheer! :) Click HERE for more information if you are a Blogger.

Now I am off to try and wrangle the kids into a cute photo shoot. :)

Friday, November 26, 2010

Gobble gobble!

Jacob and my brother, Mike, discussing something serious evidently!
"Did you get that kid?" "Huh?" LOL
Emily's face right after I made her taste pumpkin pie.

She spit it out and wiped her face on daddy's shirt! LOL

Thanks Uncle Mike, for squirting the whipped cream directly into Jacob's mouth. That was fun to clean up with he laughed so hard he spit it out all over the kitchen floor!
Jacob wanted to rock Emily. She loved it, but she gets awfully wiggly when she's excited. He was having a hard time holding on to her but I made him continue because she loved it. :)
Emily has this weird obsession with people throwing things. It doesn't matter what you throw, it makes her laugh hysterically. My mom bought poker chips, sometimes she plays with them and sometimes we throw them. Jacob and Daddy were trying to throw them across the room into a tupperware, and Emily was cracking up.

Relaxing with Daddy after dinner Jacob and Bumpa (Grandpa) making the gravy

So thankful!! My sister is having her first baby, a little girl. Her due date was yesterday. Come on out baby Katelyn!!
Thanksgiving was great yesterday. My brother and his wife came, along with a Navy friend of my brother. My sister (who was due with her first baby yesterday!) and her husband came. My parents, and our family of four. It was a great day. Tons of food, including pumpkin dip I made and put in a hollowed out pumpkin, prosciutto wrapped asparagus, and of course the full turkey dinner. Mmmmm it was delicious and fun and a drama-free holiday! :)

Tuesday, November 23, 2010

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. :)

Thursday, November 18, 2010

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!

Wednesday, November 17, 2010

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.

Monday, November 15, 2010

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! :)

Sunday, November 14, 2010

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. :)

Friday, November 12, 2010

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.