Knott's Berry Farm

I was down in the dumps so I woke up on Tuesday morning and decided, hey, let's go to Knott's Berry Farm with the kids. So I called up my mom and asked her if she wanted to come with us and if we could stay at her house after. She said that they were still painting at her place, but she wanted to check in to staying at the Knott's Resort. Hotels.com had a great rate, so she went ahead and booked it.

We headed up to LA to pick her up and so we could have brunch with my grandparents before going to the park. Apparently, somewhere between us getting over the Vincent Thomas Bridge (the bridge that connects Long Beach and the Port of Los Angeles) and pulling in to the IHOP for brunch there was a 5.4 earthquake. I didn't feel it thank goodness. I didn't even know it had happened until Mark sent me a text message about it an hour later. My mom, nor my grandparents had felt it while they were driving either.

Well, this kind of skunked our plans for Knott's since all the rides would probably be closed with the aftershocks. However, my mom had already booked the hotel, so we really had no choice but to just go. We decided to just take our time and stroll on over. We thought we could always walk around and take the kids to Mrs. Knott's Chicken Dinner (the best fried chicken in the west, although, I don't eat fried chicken off the bone). Well, we pulled up to the park and it just so happened they had just opened up the rides again. They had been down for a few hours due to the aftershocks. We arrived just before 4pm and I had remembered them having some kind of 1/2 price ticket for after 4pm. Well, we decided to head in late and just see how long the kids would make it. We ended up closing down the park at 10PM! It wasn't very crowded because most people had left after the earthquake, so the lines were really short for every ride. We had a great time. Javi got to ride almost every coaster in the park! We all loved Camp Snoopy. It was a somewhat difficult day with Ethan, since we are still potty training him, but he did ok. The kids had a great time. It was nice that we got to just stroll over to the resort after a long exhausting day.

We got up in the morning and had a wonderful breakfast of biscuits and gravy at Mrs. Knott's Chicken Dinner (yeah, they serve all day, they even have fried chicken and eggs on the menu at breakfast). Then we strolled around all the shops in the resort. After that, we went back to my grandparent's house to visit with them. The boys had fun playing with Papa in the backyard, while I relaxed and watched movies. It was nice to just sit and veg all day. I never get to do that and I sure was exhausted from all the running around with the kids. We got home late last night, so I was too tired to upload the pics then, but here they are!

www.flickr.com alphastatedotnet's Knotts photoset

Emotionally Spent

Well, after today's IFSP with Regional Center, Kaylee's OT Eval and PT Eval, potty training and my ongoing battle with everyday life of special needs kids, it's safe to say I'm emotionally spent. My stomach has been in knots for the past week with everything going on. It's really hard to constantly rehash all that your children aren't capable of when compared with "the norm" or typical children their age. I am dreading the next big appointment, Kay's neuro appointment (in exactly two weeks), where we may have another hospital stay in our near future to perform more tests to see why her gross development is so far behind. We try really hard to focus on all the good things and their capabilities, not their shortcomings, however, when trying to decide the best course of action for treatment, the areas of concern are always at the forefront. I wish their was an easier way, but it's just an unfortunate part of the process when trying to get help for an SN child. I try really hard not to let it get me down most of the time, but sometimes the harsh realities just swallow you up and spit you out. My insides churn, I feel nauseated, my head pounds and an overwhelming feeling of emptiness consumes me.

I try so hard to just appreciate what we do have. We have beautiful children, that are healthy (for the most part), we have a roof over our head, family and friends that love and care for us. What more could we ask for, right? I guess sometimes it's hard to see the sunshine when the sky is full of clouds. Just hoping the weather clears up soon :)

Potty Wars

We have won the battle, but the war isn't over yet. Ethan has made a
lot of headway in going on the potty this weekend. He did pee on the
carpet earlier today, but has since gone two times. He is just
starting to learn what it feels like to hold it and release. It has
been a power struggle, but he's really excited now that he is begining
to understand the concept. Next step, ask to go potty when he needs to
go.

Saturday Morning Fun

I had been promising the boys I would make blueberry pancakes on Saturday, so I made good on my promise.  I had to make a couple plain, since Javi doesn't like blueberries much.  The boys enjoyed putting berries in to the pancakes while they were cooking.  We had an assembly line going.  Ethan would hand me a blueberry, I would had it to Javi and he would put it on the pancake while it was on the griddle.  He and Ethan reminded me about 100x's that the griddle was very hot.  They do enjoy cooking with me and I enjoy teaching them.  My goal is to make sure that they can cook and clean up after themselves, so they won't drive their wives nuts, ahem :)  I want them to know more about the fine art of using a stove and making from scratch instead of just using the microwave and cooking from a box.  

Ethan ate most of his blueberries, but left a few on the plate.
Kaylee also had the plain.  I was afraid she would choke because of the size of the blueberries.  I did give her a sample of part of the pancake with blueberry juice on it and she liked it.
Javi made a menu and called the restaurant Mom's Pancakes for Me N' You.  Guess that mean's him and Ethan.  Notice the prices are free :)  Guess he gave up on trying to spell organic (they were about 90% organic, all but the sugar and vanilla).  Guess that Javi likes the junk food McDonald's pancakes (taste yummy, but loaded with sugar) better because he said my pancakes taste like health food ;)

After pancakes, we went to the farmer's market while daddy stayed home with an upset tummy.  Poor dad!   We had some great finds there.  We found a new product there called Heartland Harvest.  They make quick crock pot style meals that are mostly vegan, organic, gluten free and low in sodium, which is all up our alley.  Very high in flavor!  I got the Mediterranean Millet, Cuban Black Bean Soup and Bolivian Pilaf.  It's nice that every once in a while you can have a healthy easy to fix meal.  I sampled a couple of them and they were great.  I am a big fan of Cuban Black Bean Soup, so I am looking forward to trying that one out.

The weather was beautiful. I love market day. It's nice to try all the samples of wonderful fresh fruit. There are also so many different cultural foods to sample. All the wonderful colors and smells of the market. It's also nice to show the children that all food doesn't come from a drive through or a supermarket. The fruit, veg, flowers and eggs there were picked that morning or just the day before. Most of them still have dirt, roots and stems on them. Our yard is not a gardening yard (tiny yard, mostly cement), but I hope to someday have a garden in the yard when I have more time to tend to it. Still have a lot to learn in that department!!

After the market, and about a dozen times of Ethan singing the "To Market, to market" nursery rhyme, and sharing a few street tacos from the mexican food stand, we went to ride the train.  Today it was the little train with the outdoor uncovered cars.  We got to yell "ALL ABOARD!" which the boys loved.  Here is a pic of them getting ready to yell with the conductor.  Javi jumped the gun a bit :)

We had a potty party for Ethan today.  We have gotten back in to the militant regime of sitting him on the potty and having him wear undies again.  We had given up about six months ago.  It was just too much to keep up with everything going on with Kay and Ethan throwing temper tantrums every time he had to sit.  He also had no real concept of not wetting his undies.  Now that his language and social are much more advanced, he is ready once again to take the plunge.  So far, so good.  The last two days he has been in undies and he hasn't wet once.  Yesterday, he waited to pee, despite sitting about 15 times, until we went swimming and he was in a swim diaper to pee.  Today, after half the day in and out of the bathroom, he went.  We barely left the bathroom all afternoon, but the end result made it all worth it!  Hooray for ETHAN!!!

Extreme Green

Ok, so we don't have to be this annoying to be green, but it's funny. I really miss this show. It was one of my fav's. It's a conspiracy, a c-o-n spiricy that it isn't on anymore.

GO DANIELLE!!

My blogland friend, Danielle Foltz, will be testifying tomorrow in front of a joint economic committee about the price gouging going on at Questcor, the manufacturer of Acthar Gel (ACTH) for infantile spasms. Read the article.

Kaylee used nearly 4 vials during her treatment which puts the cost for her treatment for Acthar only at 92k. Not including the additional testing, hospital stay 2x's, neuro follow ups, and three other Rx's she was on during her treatment. Fortunately, we did not have to pay for the drugs themselves. They were covered by our insurance company after we exhausted another treatment option while in hospital. Because the drug was so costly, Kaylee actually had to suffer for three additional days of spasms until the insurance company could be satisfied that we had exhausted the vitamin B treatments before moving to the big guns, Acthar Gel. Then we had to go through a lengthy paper trail to prove to Questcor that we could not afford the drug if the insurance denied the claim. All while watching our tiny infant daughter have 7-10 clusters of 20-30+ seizures everyday. That is upwards of 300 seizures that could have rendered our child mentally and physically disabled just because of the almighty dollar. This is a scary thing for us having two other children with delays and disabilities. Fortunately, Kaylee is cognitively sound thus far, but she did not come out completely unscathed. She has a 4-5 month delay in her gross motor, or to the lay person, she isn't really crawling of walking yet at 12 months. She tends the drag her left side and tires quickly. She also is showing signs of some fine motor delay. To read more about our story click here.

Kaylee during her second hospital stay for a video EEG


Kaylee today


We realize that companies like Questcor are in business to make money, but 23k a vial?? I was nervous just handling the vial. Every time I pulled it from the fridge it was like I was handling a bomb, afraid to drop this tiny glass vial filled with liquid hope that our daughter would no longer have to suffer. I nearly passed out when two days out of the hospital we were forced to evacuate our home because of the SD fires which burned down homes less than three miles away from ours. The whole house could have burned to the ground, but as long as I had the vials on ice with a fridge at the other end, that was all we cared about. We were forced to scramble to find a hotel with a fridge, just so we wouldn't end up in a shelter with our very sick daughter who needed injections twice a day. We were terrified we would not be able to obtain more of the drug if the fires continued to burn out roads that would allow us to pick the drug up. We couldn't leave town either because of the uncertainty that we would not be able to obtain more. We were forced to stay put and let our sick daughter with a weakened immune system inhale ash and smoke while still having seizures, which continued in to week 3 of her treatment. Why?? Well, mostly because the drug is too expensive for any pharmacy to take the risk of carrying it. Even CHSD did not carry the drug because of it's expense and shelf life. Our supply had to be special ordered and brought to us through CHSD home care.

Thank goodness for strong people like Danielle Foltz giving the families affected by IS a voice. Please take the time to post a comment and show your support for Danielle and her tenacity in putting a stop to drug companies trying to profit at the expense of our children's health. To hear more about Trevy or Danielle's trip to DC, visit their blog.

PT Eval

We had our Physical Therapy evaluation today. Looks like Kaylee is pretty much what EI had said. She is testing at about a 7-8 month level in a gross motor. It was something we were anticipating. We are going to begin therapy in August. They are a little short staffed at the moment, so that is the reason for the delay.

She actually had a really great day at the eval too. We figured out that she does much better on a "wrestling mat" when her knees aren't touching the carpet. We aren't sure yet if it is a sensory issue or the lack of padding on her knees. She has little to no body fat, so I can imagine it would hurt to be her knees all the time. We have an OT eval on Thursday, so we'll see how that goes.

Brotherly Love

Javi was showing Ethan how to play Pokemon when we were walking around
Circuit City today. It was very cute. What a good boy! He even shared
with brother and let him have a turn.

Surprise!

My mom brought me a cake late last night. It was bedtime for Ethan,
but we decided to let him stay up for cake. It was DLISH! I paid for
it later! I am lactose intolerant, but I love ice cream cake. I ran
out of dairy pills, but it was worth it! Javi was at his dad's house,
but since he doesn't like cake, he wasn't missing much :) It worked
out well because Ethan got some solo attention from Mom, Dad and
Grandma during what I'm sure must be a tough time with his brother and
sister getting all the birthday attention.

We made our wishes, but I can't tell you or it won't come true!

Happy Birfday to Mommy

Ethan and my mom sang happy "birfday" to me this morning. Kaylee
hummed it. It was too cute.

I got my coffee and then made biscuts, gravy, hash fries (aka known as
hash browns, but that's what Ethan calls them), and bacon. We also had
banana slices, just so we had something healthy. Daddy slept throught
breakfast because he went to bed late.

Today we are going to meet with, Scott, our handsome young realtor
that I would like to fix my single friend Amber up with (just call me
yenta). We are going to look at the 5br again. It's the biggest one in
our price range. It needs a little TLC, but has some nice features.
We'll see what Grandma thinks of it.

Shanna Grimes
(Sent from my iPhone)

Happy 8th Birthday Javi!!

Glad your party was a success and everyone had fun. Happy 8th
Birthday to my big 3rd grader!!

The Princess-mobile

The bday girl got her gift from grandma tonight. Grandma is here all
weekend for all the bdays. My sister's is also this week. Four in a
row! I'm partied out, man!

Wall-E cake

Jav hasn't seen it. He saw part of it, but I didn't finish it until after bedtime, it will be a surprise. He was really excited about it yesterday, that's what it's all about. I love to see his little face light up. He usually starts jumping up and flapping he gets so excited, which is always cool. Today I have to make giant choc chip cookie that will go under Wall-e. Javi hates cake.

Shower Success

Well, we had so much fun at the classroom baby shower yesterday. Here
are a couple pics. Glad we were able to pull it off. It's been such
a busy week, but I definitely wanted to do something special for Mrs.
Morrison. She has been Javi's teacher for the last two years and she
has been great. Congrats to her and her family!

Green Water Guns

Rather than going out and buying water guns this summer, why not take the greener approach and use a recycled water bottle?  Simply take a knife and poke a hole in the lid of the water bottle.

Benefits:

-Does not cost any money if you have some empty ones lying around.
-Easier to refill
-Makes the fight equal, since everyone will have the same type gun
-Wastes less water because you can easily fill in a bucket or butt it up to the faucet with out wasting
-You can still recycle the bottles after.

They do tend to deflate the more they are squeezed, but you can easier blow air in the bottle to reform the shape.  Simple summer family fun with out buying some toy that will end up in a landfill, where a bottle is easily recycled.

THINK GREEN AND SAVE GREEN!

Kay's Smashing Birthday Party

Ok...so I haven't gotten the pics from the entire party yet. I'm waiting for my friend Amber to post them. She was the designated picture taker, but here are a few pics.

Kay and I at the pool party in our full princess gear...


Happy Birthday to you...


Ok, just a small piece, I'm on a diet...

Yum, that's good.  Maybe just a little more...hey, is there more under the plate?

Oh, my! I ate the whole piece!!  Tomorrow I start my diet.  Just after I have another piece!


It was a fun party! Can't wait to see the rest of the pics!

Pics on Picasa

Ugh, I had fixed all the pics and I guess when Mars Edit (my blogger editor) sync'd it pushed what I had fixed though blogger's web app out!! Anywho, here they are on Picasa.

Sorry they were so gigantic. Blogger doesn't really allow MarsEdit to push pics up to the blog properly. It's a work around through Picasa, that's why they don't have thumbnails.

Good to be back!!

Ok, so I know it's been a few days since I was last in blogland, but it's been a busy week. I will itemize the week recap:

-Rearranged living room furniture, pics below
-Took down 1/2 our playroom and made it back in to a dining room (it's actual intended use)
-Scrubbed down the entire downstairs, cleaned floor boards, hands and knees old fashioned scrub down

-Decluttered the entire downstairs
-Hung curtains in the den
-Started building an art table for Javi's bday
-Hand building invites for two parties that are to be held next week (Wall-E and Baby Shower for Javi's Teacher.
-Planned and preped for Kaylee's 1st and my bday party (we are sharing the party)
-Made Kaylee's smash cake. She is really in to purses. I know, we are in trouble ;) Just like mommy (I have a few Coach and a Gucci, but hey, I only get them on sale!!) Wish Sharon lived closer, would have definitely ordered it! My cakes are pretty sad looking, but still taste good ;) I just don't have the patience or talent, but I try.

Tomorrow is the big day. The first party in the party arsenal. Three parties in a week!! I'm already partied out! I'm excited for tomorrow, just hope I can stay awake! I am exhausted after all the running around this week.

Well, we (the kids and I) looked at another house today. Here is the virtual tour. Our realtor sent me a link to this one and I just had to see it in person. It looked perfect from the pics and in our range. Little did we know that it had a lot of finish work not pictured in the virtual tour. It was livable, a tub needed to be finished off with a base board and tile, but had a nice jacuzzi tub that was brand new! Had a lot of trim work that needed finishing and the landscaping needed to be redone. One wall needed to be finished off upstairs too. Other than that it was great! We are still keeping our eye on what's out there. Looking for that diamond in the rough. We are looking to buy early next year, so we have some time. Patience is a virtue in today's housing market. There's a lot of inventory, but unfortunately, a lot is still out of our price range in SD. Median single family homes are around 540k, and our range is 450k. Guess we will just wait it out!

SDRC

We are at our psych eval at San Diego Regional Center. Javi has one
every couple of years. Pretty much to see if it's time to cut off his
services. Well, I think he needs them now more than ever, but we'll
see what happens. Javi's sensory needs have been overwhelming lately.
He needs input just about every 5-10 mins as compared to a few months
ago only needing it once an hour. He is showing much more classic
autistic behaviors as he gets older. I am not sure if something
changes in his brain as he ages or if just the demands and
responsibilites change, this is his coping technique. It could be a
combination of the two. I am going to investigate treatment options
for his sensory needs. He already does OT at school and has a sensory
diet, but these days that just isn't enough.

Hope all goes well. Javi just went back for the first part of the
eval. To be continued...

Choo Choo

Another great day at the train park. We love taking the kids there on
Saturday. It's one of the simple pleasures in life. I love to see
Ethan's eyes light up when we arrive there and he sees the Choo Choo.

Today it was the steamie. We got to see it take in water and do a
blow. It was pretty neat. Ethan loved it. Being the middle child, and
the kid with the least needs for the time being, it's nice for the
focus to be on the things he's interested in.

We discovered that Ethan is really in to baseball. We played in the
yard this evening after we got back from the pool (we went swimming
after the train to cool off). He's really good at it too. So focused
when he plays catch or swings the bat. He's got a really good arm for
a three year old. He says he wants to play teenball. I'm hoping he
stays interested.

Happy 4th!

From our little firecrackers!

Squeaky Wheel with EI

It helps to be a squeaky wheel when you speak to the Regional Center Reps. They can provide you with more help than you thought your kids were entitled to! I was just making a follow up appointment with our Rep, since Kaylee turns 1 in a couple weeks. We have a review every six months. I was telling him about how far behind Kay was with Gross Motor and he said he would put in for a Physical Therapy assessment and an Occupational Therapy assessment. He even said he would put in for it at the center I asked for, which is K.I.D.S. Therapy. My boys get services at their schools through KIDS, so I thought it would be a great place to go. Plus, it's close to the house and with gas prices the way they are!

I'm happy that we can get the ball rolling on that with out having to wait until August for her Neuro appointment.

More Milestones

Kay is starting to say "mama" started on Friday. She's now pulling up
to a standing position, started on Sunday. She's also getting pretty
fast with that army crawl, despite the fact that she drags her left
side. She's just starting to cruise. She can walk a step or two
holding her toy box.

Ethan is now talking non stop. From the shy boy who never left my side
to every 2 seconds he has something else to say. He sings all the time
too. Today when we took an evening walk around the neighborhood with
daddy, I had to tell him twice to say excuse me and be quiet while
daddy and talked.

Good news all around!