Monday, June 28, 2010

Third Annual Microcephaly Convention

Okay, so it was HOT in Arizona. I just don't think people should live where it gets this hot! The heat definately wrecked havoc on a lot of the kids. My Peanut had a lot of seizures, as did many others I talked to. Besides the heat, the location was gorgeous! :)

Attempting a group photo. Go ahead and try and get this many kids to look in one direction, at one time!

Here are some pictures of Peanut with some of her new friends! :)

Isn't she beautiful! This little girl reminds me so much of Peanut. Her facial features, her beautiful eyes and eyebrows, that perfectly curly hair! :)

Another cactus. I had never seen so many types of cactus in my entire life!

Monkey wanted to pose by each and every one of them, LOL.

Lilly, after a swim. Isn't she cute!

My two babes under a giant cactus.

On Saturday night, we had a delicious barbeque dinner at the pool. They closed this entire pool for our group and played Spongebob and then the movie Up on the screen. It was so much fun!

Here is Peanut with Daddy after her final swim of the trip. :)
Little Lilly was hilarious! Her dad Leroy kept throwing her up in the air and she would laugh hysterically. It was great. :)
We saw a lot of wildlife around the resort. Lots of rabbits, quails, roadrunners, and other strange birds!
It was so much fun to hang out with other families whose kids are so similar to Peanut. Here we are sitting in the pool with Jacob, Damon, and Peanut! Oh, and yes, Monkey's toes. LOL
Peanut giving me a kiss in the pool.
Isn't she so sweet? I can't believe I'm posting pictures of myself online, in a swimsuit. Wow ... ;)

I swear the boy is half fish!

Monkey loved all the inner tubes and buckets and such that were around the pool.
Look at that happy girl! Peant loves the pool and loves it when you jump around with her and act really silly.
We bought her a WaterWay Babies neck ring at the convention. It was so much fun to play with!
This is Jacob on the left, Kyle in the middle, and of course Peanut on the right. Aren't they adorable together!

Peanut giving a big smile to the people who were signing us in the first day. She was happy to be around so many people!

Monkey loved hanging out on the balcony, playing DS.

The first night there was a dinner and a slide show. Before the slide show started, the screen saver playing over and over had this great picture of my Peanut on it! She got to be on the big screen all night while we ate dinner. :)

We had asked and paid for a fridge in our room, for Peanut's medications and formulas. It wasn't there when we checked in, so they had to bring it up later. It wasn't a big deal at all, but they left us these amazing chocolate covered strawberries and a "sorry" card later!
Even the elevator was fancy! :)

These cool Chipmunk statues were in the lobby where we registered for the convention and met up with everyone. How fun!This picture was taken outside of Walmart in Buckeye, Arizona. It was our first cactus picture. There is really no landscaping in AZ besides rocks and cactus!
I will post more about the convention itself later. I just wanted to get the pictures up while I had a few minutes! Peanut's bus just dropped her off from the first day of summer school, so it's back to the grind. My parents and sister are coming over for his birthday dinner tonite. He chose ribs, meatballs in my "special sauce", and prosciutto wrapped asparagas. Then we'll have leftover birthday cake from his party on Saturday. Those pictures will be coming soon! :)

Don't forget to check out the post below this one to enter an awesome giveaway!!

Sodastream - a great review and an awesome giveaway!

Have you heard of Sodastream? This is the coolest new thing, and I was so lucky to be allowed to review it and do a giveaway! This gadget lets you make your own sodas and flavored carbonated waters - diet and regular, in a HUGE assortment of flavors. All you do is add tap water, hook it up to the machine, push the button to add carbonation, add the flavor syrup, and you have soda!! You don't have to worry about running out of soda with this machine - each bottle of sodamix makes about 12 liters of soda (about 33 cans!) for around 25 cents per 12-ounce can. Not only is it fun and convenient, it's cheap! :)

We got the machine and Monkey (my 10 year old son) was sooo excited to try it out. His favorite soda is root beer, so that is the first one we made. He had a blast pushing the button and making the carbonation. It has a tank of CO2 that jets into the water, making the bubbles. You can decide if you want a little carbonation, a medium amount, or in Monkey's case, a LOT - all the better for burping. LOL

My favorite flavor was the Diet Pink Grapefruit. It is SO good! There are many to choose from - cola, root beer, ginger ale, lemon-lime, lemonade, orange, tonic, cherry, pete's choice (which is like dr pepper), even an orange mango one!


So, on to the giveaway!

One of YOU will win the following - a Fountain Jet Soda Lover's Start-Up Kit (approx. $100 retail value.) It includes the winner's choice of black/silver, white or red/silver Fountain Jet, CO2 to make over 100 liters of soda, 2 reusable carbonating bottles, a sample pack of flavors, and 3 full-sized flavors of the winner's choice.

How can you win? It's simple! Just go to Sodastream's website and check it out. I know you will want one after seeing it, their site is awesome. Then just leave a comment on this post. Tell me what color machine you would choose, and which three flavors you would want to try first. I will have Monkey choose a winner at random on FRIDAY, July 2nd. The only restriction is that you must live in the United States (sorry to my international readers, that is Sodastream's policy).

So .... go check it out, and leave a comment! :)

Wednesday, June 23, 2010

Polycose anyone?

Does anyone use Polycose, and need some extras? We have waaaay more than we can use. I don't have room for all the cans! I would be happy to send some out to someone who could use it. :)

Saturday, June 19, 2010

We see the Head Honcho Doctors today ....

The convention is going great, it is so much fun! We have met some amazing kids and their families. Today we see Dr. Dobyn's for our appointment. We are hoping that he has some answers for us about Peanut. No one is able to figure out our mystery girl! :)

The next presentation is getting ready to start and I need more coffee before we go in. I will have a ton to post when we get home!

Oh and Becky if you are reading this .... the first night there was a slideshow of all the pictures everyone had sent in ahead of time. Right in the middle of the presentation were a bunch of beautiful pictures of Ben, with his dates written and a beautiful tribute to him. I broke down into huge tears at that point. Your sweet Ben will NEVER be forgotten! And just so you know, I asked Jenniffer (the lady in charge of Childrenwithmicro) and she is going to send you a copy of the slideshow. :)

Thursday, June 17, 2010

Holy crap.

We're on the road to AZ. A two lane in each direction road.

It just happens to be completely shut down due to an accident. And it's almost 90 degrees out, but I have only a quarter tank of gas so we can't sit with the AC on.

Life flight helicopter just landed up ahead.

Taking a moment to be thankful we are only inconvenienced, and not involved.

We're moving in the emergency lane now!

Wednesday, June 16, 2010

Off to bed, we have an early morning!

We are leaving at 4am to drive to Arizona for the Microcephaly Convention. It should be about an 8 hour drive. Wish us luck!

Who's bigger, the hair or the Peanut? :)

Tuesday, June 15, 2010

Trying another new med

We met with the neurologist yesterday and he wasn't thrilled to hear of her having so many generalized tonic/clonic seizures lately. We don't normally have this many (grand mal) so it was definately out of the norm for her. He always says he thinks "it's a progression of her epilepsy" which is concerning.

We are weaning off the Topamax, since it didn't help her seizures and in fact seemed to make them worse. Plus all she does is sleep and whine while on it. We are starting Trileptal in it's place, to go with the Keppra we are still on. He explained that Trileptal works for focal seizures, which is what her EEG showed last time. Then they spread to secondary generalized ... so if we could stop the focal seizures, we should be in turn stopping the grand mals.

Cross your fingers. He says we are getting to the end of his expertise, and the end of the meds available. We will be moving on to UCLA Epilepsy Center soon. Our neuro is private practice, so there's no one else there to consult with or get a second opinion from. He said he thinks we will need to start discussing vagus nerve stimulators or brain surgery. Ick.

Does anyone have experience with VNS? He thought that the patient has to be 60 pounds to get one. We are barely 30 pounds, and not getting bigger any time soon. Does anyone know if that is true? I can't find information online since it is only "approved" for kids 12 and up.

Thanks in advance. And thanks for always reading our seizure blahgs. ;)

Monday, June 14, 2010

Pictures from this weekend

Today is the first day of the last week of school! WAHOO! :) We are missing Thursday and Friday for the Microcephaly Convention, so we only have THREE days this week. Double WAHOO! :)

These are from our visit with Jaxson and family. It was so much fun, I hope hope hope they are able to move here soon! My Monkey boy gets along so well with their boys, and I feel like Lacey and Ray have been our friends forever. And Jaxson .. well that goes without saying. He's just so cuddly and loving. I had the best time holding him.

We went to a birthday party on Sunday, and this is how Peanut fell asleep. Looks comfy, doesn't it? LOL She is so flexible. This is proof that the Topamax isn't great ... she never sleeps and she falls asleep through-out the day every day now. When she wakes up it's usually in a seizure. For some reason she has them more in her sleep than any other time.

These last pictures are from Monkey's last day of tennis lessons. He has so much fun there, and maybe more so because he's usually the only boy! The other boy in these pictures is a friend of his who went with us to the last class. We are taking a break from tennis over the summer because it's SO hot on the courts, but will surely get him back into it in fall.

Peanut's school had their annual Special Olympics last week, it was so much fun as always. I will post those pictures when I get time to go through them! :) I am calling the neurologist first thing this morning, he wants us to come in and go over medication options. We need to decide between Banzel and Depakote. Depakote is not a great drug for Peanut because of her metabolic disorder, but it seems that we are running out of options here. I will post after that appointment!

Sunday, June 13, 2010

Stupid Seizures Super Suck!

Friggin seizures. I hate them. It's hard to believe that we have only dealt with seizures for 9 months. It feels like forever! We've cycled through meds like crazy, with no relief.

Peanut had a pretty big tonic/clonic (grand mal) seizure on Friday night. Lacey, Jaxson's mom, was over for dinner with her awesome family. She got to witness Peanut seizing, that's always fun. She woke up through-out the night with numerous seizures, but they all stopped in under 2 minutes. Dang if a 2 minute tonic/clonic doesn't seem to last forever though!

Yesterday she had weird spasm type seizures, they look like infantile spasms. Last night she had a 4 minute absence seizure. This morning she had a tonic/clonic while I was getting her dressed. We headed out to a birthday party and she slept through half of it.

I just emailed the neurologist. The Topamax/Keppra combo is obviously not working. Besides the seizures, she is grumpy and moody and tired on the Topamax. I hate it. The neuro mentioned trying Banzel next, so we'll see.

I'm really nervous because we are leaving first thing Thursday morning for the Convention for Children with Microcephaly. It's over 100 degrees there right now, and heat definately triggers Peanut's seizures. I'm taking all of our extra Diastat's, and researching where the nearest Children's Hospital is before we go. PLEASE pray that we have an uneventful trip!!

Wednesday, June 9, 2010

A trip to Disneyland with Jaxson and family again!

We take Peanut to the First Aid Station to cath and tube feed her every three hours. The cool thing is that a lot of the characters come out of the first aid station to go in to the park! So we sometimes get private character time. We were lucky enough to have THREE to ourselves this time. :) The characters are SO sweet with Peanut.

We have a blast with Jaxson and his family. My Monkey gets along with all the boys as though they've been friends forever. And really, Lacey and Ray couldn't be any nicer! :) It is always a great time when we hang out with them.

We were waiting for a parade to start and both Peanut and Jaxson fell asleep. It was really funny, it's so loud and crazy there yet they were both snoozing. Peanut was smiling off and on in her sleep, it was really cute.

We had so much fun. Friday, they are heading to the beach near our house and then coming over for play time and dinner! :) (Picture me in a mad rush to clean the house now) Hehe!