A Day of Beauty

Kay and Emmie getting their hair done. Kay looked pretty funny with the rollers in her hair.

Still in LA

We decided to stay a little longer to assist my mom in packing up her apartment. My mom is set to move in with my Grandparents in about another month to help them out. We have had a nice and productive visit with them. We managed to get them moved to a different room so they will be more comfortable and not have to navigate steps. My grandmother is not as spry as she once was and is refusing to use any assistive walking devices, so we all thought the safest option would be for them to be in a room that didn't have any steps. My mom will be moving in to their old bedroom.

Moving them was not with out injury, unfortunately. I did suffer from a little head trauma and my aunt had to take me to the ER to get patched up. I had a ceiling fan glass light fixture fall on my forehead while I was trying to clean and re-hang it. No stitches, but it did bleed a lot. Head injuries always bleed a lot. Posted some pics to Flickr.

Ethan has had a great time visiting with Papa. He has been his little helper working in the garage with him, tooling around. He helped him smash aluminum cans and helped him water the lawn. They have "fished" in the bucket, which is one of our favorite past times at Emmie and Papa's house.

We will probably be leaving tomorrow in the late morning. I miss Javi, since he stayed behind. He couldn't miss school like Ethan. He has been spending time with his Aitona and Nana (Javi's grandparents on his dad's side) after school.

Ok, well, I have to get packing. I'll post some pics from the trip soon.

Facts about IS from MarissasBunny.com

Stand warned, there’s mathematics and drama ahead.

• There are approximately 305,297,000 people in the USA

14.02 children are born (and survive three months) per 1000 people in the USA every year.

= 4,280,000 babies will be born and survive to three months old

Infantile spasms prevalences in research are variable and depend on which source you refer to. I’m going to estimate conservatively and assume a 1:1 male to female ratio, and use 1:4000 for males, and 1:6000 for females, averaging out to 1:5000 births afflicted by infantile spasms. The ratio is actually 1.05 to 1 male to female, so the actual number of IS kids is a bit higher.

So, with 4.28 million babies and a 1:5000 infantile spasms affliction rate:

• 856 kids a year are diagnosed with infantile spasms.

Infantile spasms resolves itself into something else at approximately 2 and a half years of age. Following that logic:

• 2,140 sufferers of infantile spasms currently less than 2.5 years old.

Infantile spasms is fatal in 1 in 20 of these kids before age 3, not due to accident. That makes 42 kids a year. ACTH treatment mortality ranges depending on the literature between 1:20 and 1:30. For the sake of argument, we’ll say 1:30, and that will account for both kids that go on multiple courses of ACTH and kids that never do. That’s still an additional 29 kids a year.

• 42+29 = 71 kids die a year from infantile spasm related causes

Removing all mortality statistics from IS kids, that’s 786 kids that survive to age 3. Accidents from drop seizures following IS resolution claim some more before adulthood at age 18. The numbers on accidents are fairly staggering depending on your source, but I’ll call it 1:20 again, for the sake of conservatism - this number goes very high in some studies. That’s another 40 kids before age 18. 746 kids survive to age 18. Overall mortality before age 18 is then about 12%- one in eight.

One more time, and in bold. One in Eight.

Look around your town, your supermarket, your place of work. Would you notice one in eight people gone? In what world is a 1 in 8 mortality rate un-noticeable or inconsequential? How many of these kids can be saved with better research, quicker or more accurate diagnoses, more community awareness, or a better support mechanism? I’m sure it’s not all of them, but given the current state of research on IS, a small improvement would make a huge difference.

IS kids have had one voice in the past- Danielle Foltz talked to the Joint Economic Committee in July about the price of rare disease drugs. Penny-arcade.com helped me reach over 60,000 more people, but it’s still not enough. I’m not Superman. I can’t sweep across the country bearing a red cape and talk personally to the parents of all 2,140 kids with infantile spasms, I can’t even catch the new diagnoses. It’s asking a lot of the parents of IS kids to be a public voice for their children individually.

Even with everything else going on in our lives, I’ve started the wheels in motion for a foundation for promoting awareness and providing support to IS parents. This is going to take time and money, so be patient with us. A week or so ago, I spoke with Mike Bartenhagen, another face in the battle against infantile spasms, about this and we’re both on board with this idea. As a group, we’re stronger and louder than we’d ever be individually.

If you want to help, please contact us. If you’re a parent of an IS kid, and feel you can offer sympathy, support, or advice to other IS parents in the future, especially the ones with new diagnoses, please let me know. Financial help is always welcome- please donate through the front page. These are the early, fragile days of any new foundation-to-be, and any and all help is welcome.

ABOUT MARISSASBUNNY.COM - Marissa is a baby girl who was diagnosed with Infantile Spasms on February 15th of 2008. Infantile Spasms is a serious pediatric epileptic condition that could leave it’s mark on her for years to come. Fairfax is Marissa’s Bunny - a shared name for stuffed rabbits that are traveling the world trying to spread awareness of her disease that has no reliable cure and is hard to relieve. Marissasbunny.com is a website dedicated to spreading the word about infantile spasms, with the goal of better diagnoses and enhanced support for parents with infantile spasm suffering children.

Autism Bites on Discovery Health Channel

Discovery Health channel will be showing a documentary on Oct. 1st at 8PM ET/PT. The title is: "Autism X 6" and it is the story about our family. It will rebroadcast on Oct 4, check listings for time.


We hope that by allowing our story to be told that it will do three things:

1) Increase the awareness of Autism
2) Increase the understanding and tolerance of Autism
3) We hope that we can be of some help to other 'Parents of Autism'

Please tell everyone you know to watch it. Your family, friends, neighbors, religious and political leaders, etc. Also post it, email it to any and all groups, forums and email lists you have.

If you would like to contact us personally go to autism_bites@yahoo.com or our website: AutismBites.com

Thank you!

Hi, from the city of Angels

We are visiting the fam for a few days. I will probably not have a
whole lot of time to blog while I'm here. I will still be reading
everyone's blogs in the evening. I'll try to comment when I can, but
it's really slow to do from the iPhone over the network. Wish I could
use my rss reader to comment!

Have a great weekend!

Shanna Grimes
(Sent from my iPhone)

Javi Going GFCF?

We decided (both sets of parents), it would be a good idea to give the
GFCF another go.

We are hoping to do a phase out of gluten and casein. The Grimes house
has already started our phase out. We began a few months ago. I have
been buying more GFCF snacks, cake mix, pastas, pancakes, pizza crust
and non-dairy items. Javi seems to do well on soy, thank goodness, so
that makes the substitution a little easier. He's been doing quite
well with everything else too.

Hoping the transition goes well.

Ethan's Apple T-Shirt

Ok, so it's not like daddy's, but it was made using real apples as a
stamp. How's that for organic!

Menu Planning

In my latest effort to cut costs, I have had menu planning on my to do's for about a week. I have been putting it off, doing random internet searches on the subject mostly, but I haven't actually planned one yet. I usually just fix whatever sounds good, or whatever the kids want (with in reason). Javi will usually say chicken or pasta.

After my investigation, most say to plan your menu around the store fliers that come in the mail. You plan according to what's on sale. That can be challenging for us, because I try to cook fairly healthy as much as possible, and the stuff on special isn't usually organic, unless I am buying from the health food store. Today was a good day to shop organic (which is why I went), there was an organic sale at our local health food store, Henry's. A lot of their organic produce and organic packaged items were on sale. I definitely noticed a difference. I had a full cart and it was $89. I really spread it around and got a mix of meat, veg, frozen and packaged, so I felt like it was a good variety. That will be our food for the week. I should be able to make a roast, make a stew out of leftovers and make some pasta and tonight we are having a chicken and veg stuffing casserole.

I love Robin Miller's show on the food network because she really deals with the concept of menu planning. Making extra portions and banking items for later in the week to use for a different recipe. Unfortunately, I hardly ever get to watch the whole show, if at all because it comes on when I have to pick up Ethan. Fortunately, all the recipes are available on the website I linked to.

Anyway...my reason for the post was to ask all of you how you plan or if you plan your menus for your family for the week. Do you have any interesting tips, tricks or resources that you use? Email me or post a comment with your response. I will share all your answers in a post.

Thanks!!

Home Update

Well, ultimately we decided not to proceed with the offer on the home. We were so close, all we had to do was sign the offer, but after investigating some other options for financing, that were suggested by Mark's parents, we decided to go with a home in a lower price range.

That home was really perfect for us, but there are lots of homes out there and we will find another that will work better for our pocket book, as well as satisfy our needs and maybe some of our wants.

We are disappointed, but like I have said before, everyone has to start out somewhere in the home market. We happen to be jumping in the market after completing our family, instead of when we are starting our family. We may not have our dream home to start out with, but everyone has to start somewhere. We'll keep looking...there's something out there for us.

and then there was one...

Only one sinful, fabulous, decadent, cupcake in a jar left. Whatever will we do???? I think we will need to order cupcake in a bucket!!!

Ok, so it's not exactly a whole one left. Mark ate half the strawberry and left the other half for me. I took a couple bites of it and OMG!! It's was hard to stop at a couple bites. I had to exercise complete restraint not to try to shove the whole jar in my mouth.

The kids really enjoyed the cake too. Here's a couple shots of them enjoying. It was a lazy Sunday, so we stayed in our pj's. I had a migraine all morning, so we didn't get dressed until after lunch.





Sharon, I really think you have got something here. I think you should sell these so every one can enjoy your cake, world wide. It's a great gift, for almost any occasion. I'd rather have one of those over flowers any day. It was just perfect. The coolest part, was you could take a few bites, seal it and take a few bites later, if you can restrain yourself that is. Such a neat idea!

Thank you, thank you, thank you for sending us some mama love'n in a jar. Hands down the best cake ever, and I have had a lot of cake!

Made the offer!

Well, we made the offer on our first home. I found one that was just what we needed. I have a mixture of emotions about all of it. Butterflies, because it's such a huge commitment, but also whether or not our offer will be accepted. I am a ball of nervous energy.

This home is exactly what we were looking for. It satisfies everyone's wants. Here are the photos:




Much more at http://www.previewfirst.com/mls/photos/18597

It is a small home, but it really maximizes the space and it has a very open floor plan. The outdoor living space is GORGEOUS!! Plus, daddy's fav, a stand alone fully permitted guest house/office! It has a pool and two large side yards with garden boxes on each side. A grassy area for the kids to play that is shaded by a tree. The patio is nice, stamped concrete. It really is the perfect starter home. It's beautiful! Fingers crossed we'll get it. Trying not to get too excited, you never know.

A Sweet Surprise!

What a sweet surprise to have this waiting on my doorstep! My very first taste of Cakes By Sharon! I'm so excited!! Thank you so much Mama Skates!! Cupcakes in a Jar!! I have been wanting to create some myself. Such a cute idea :)

Another very trippy surprise, I opened the card to find myself looking at my own handwriting!! As it turns out, our hand writing is very similar. I sign my S exactly the same. I had my husband look at it and he thought it was pretty crazy too. Guess you are my sista from another mother ;)

Thank you soooooo much. It totally made my day. Love them, love them, love them. Can't wait to bust one open and taste the sweet sinfulness of a Mama Skates original.

UPDATE: OMG!!! HANDS DOWN THE BEST CAKE I HAVE EVER TASTED!!!! THAT FROSTING!!! I opened the chocolate (my fav). Took one bite and I had to run upstairs to share with my husband. His exact words "OMG, that frosting is amazing! Can you make frosting like that??" I told him I use your recipe, but I just haven't fine tuned it yet, since I have only made it a couple times. I don't think it will ever be as good as the cake master!

TheSqueakyWheel.com

Wouldn't you know it? They have a site made for us squeaky wheels!! They also categorize by "Price Unfairly Changed". No complaints about Questcor yet. I'm surprised!

The Walrus

After reading Danielle's post today,  these images came to mind:

Well, as you may have guessed, the Walrus is Questcor, manufacturer of Acthar Gel (ACTH) .  Fat, bloated, and whistling all the way to the bank, charging up to $25k per vial of Acthar.  The oysters, are our children, who have no choice but to follow since there really aren't a lot of options for them.

Who is the carpenter in this story?  According to some, the carpenter did no wrong because he didn't technically eat the oysters. But he aided the walrus in the deception, and even built the shelter in which the oyster's were eaten.  

Does the carpenter remind you of anyone? Who's side is she on? Some would say she is somewhat sympathetic to our cause, some would say she's aiding Questcor to continue their evil ways. Read the post and judge for yourself.

All images are copyright of Disney and are reproduced without Disney's permission. They are for entertainment purposes only.

Kay's First Portraits

I gotta pee...

All done drinking the water, but I am wiggling in my chair. I have
less than an hour to go, so until then, I'll be doing the pee pee
dance. I'm avoiding doing dishes right now, since the sound of
running water would be torture. My friend Carrie is coming with me to
keep an eye on Ms. Kaylee. Now on to the next part of the torture
test. Pressing on my full bladder. New punishment for peeing in the
street? I think we've found it. :)

Threes...Tag from Danielle

I was tagged by Danielle to list my threes...

Three Joys...

My children...growing and developing.  They are not typical, but they are making progress, which is all I can really ask for.  I love to see them happy and smiling.  I love the little moments I have with each of them individually.

Coffee... preferably a fancy sugar free vanilla latte, enjoyed with my husband while we are alone on one of our quickie coffee dates.  We are in search of a new coffee hang out, since they closed the local "Java Central".  I prefer the little mom and pop coffee houses, but there aren't many left since Starbucks, Coffee Bean and Peet's took over the market.

Cooking... I love to cook.  I just wish I had more time for it.  There's nothing I enjoy more than watching my family and friends enjoy the food I made with my own two hands from scratch (or as much as possible from scratch).  I really would like to sit down and plan out a regular menu, so I can get really organized and maximize our groceries, but it does take time.  I will have to make time for it one of these days.  I know it will make things easier in the long haul.

Three Fears...

Our children will not live happy, independent, productive lives as a member of society.  This has become an even larger fear since hearing the statistics for adults with Autism from the RDI training.  For the most part, we live our lives day to day.  It's difficult to hope for the future because you do not want to set limits, but you also do not want to expect too much.  Things have been a huge let down in the past when we try to put benchmarks things.  The sad reality is, my children will probably never be astronauts, doctors, lawyers, soldiers, or president of the US. But, when I think to all the kids I grew up with that are now adults, none of them any went in to any of those fields.  Just like any mom, I want them to be happy.  I hope there will be a place for my children, where they can feel independent, successful and accepted.

Ghosts...Mark thinks I'm crazy, but I swear we have a few that have taken up residency with us. It really freaks me out sometimes.  There have been a few unmistakable incidents.  Last night I kept waking up feeling like someone was watching me.  I even felt someone sit on the end of the bed (on more than one occasion), but each time I looked, there was nothing there.  I've seen weird things, heard weird things, including foot steps upstairs when we were all downstairs.  Cold spots, dark shadows, electrical appliances go wonkie.  I will see things out of the corner of my eye, but when I look, they're gone.  Pretty freaky, huh?

Heights... I get weak in the knees.  I don't mind planes, but I do mind tall buildings, hot air balloons, ferris wheels.  I hate being suspended.  I have tried to conquer this fear many times.  I went to the top of the Space Needle in Seattle, I have tried standing on the glass platform at the Palms Hotel in Las Vegas, I have been to the top of the Stratosphere Hotel in Las Vegas and I have gone on many tall roller coasters.  Each time I get that sick, weak in the knees feeling, but I still manage to get through it with out passing out.

Three obsessions...

My house being clean.  I can't keep it as clean and organized as I want it, with out turning in to a complete psycho and driving everyone nuts.  I definitely have a little OCD when it comes to my floor.  I like the floor, above all things to be clean.  When Javi was born, was when my OCD was at it's worst.  I was a total clean and germ-a-phobe.  No one was allowed to sit on the bed once it was made.  I moved every appliance every few days to wipe underneath.  I would vacuum almost daily, clean the bathrooms daily and do laundry any time there was more than a few things dirty.  I remember raking carpet tassels, so they were all perfectly in line and rearranging objects until they were just where I wanted them.  What happened from there?  We moved in with Javi's grandparents.  They lived in a much larger home and it was impossible to keep to those standards.  Javi developed an allergies, since he had hardly any exposure to dust as a small baby.  I am much more relaxed now, especially about the laundry.  I have about three baskets of folded laundry that I still need to put away.

Googling...I am a google freak.  I will look up the most obscure thing, just because I can't stand not to have the answer.  Mark and I are the same that way.  I love having such vast amounts of information at my fingertips.  It is truly a miracle.  To think that this technology has only evolved during the latter half of our lives it totally amazing.  

Clean feet...I am a foot weirdo.  I like my feet to be clean before I go to bed.  I wash or wipe my feet with baby wipes before I go to bed, even if I just took a shower.  I don't like to bring things in to bed with me.  I also never go with out polish on my toenails and I scrub my feet and give myself a full pedicure every two weeks.

Three Surprising Facts...(almost forgot these!  started to read Sharon's and forgot that I hadn't done this part!)

May have a touch of clairvoyance.  Not all the time, but the fact that I have felt weird things or feelings in certain places or around certain people, had many deja vu's and weird unexplained connections to things from dreams...dunno, I know it sounds hoakie, but I need to read more about the subject to really make a determination.  I seem to feel things more with children.  No, I can't read minds, see dead people or telekinetically move things with my mind :) I'm also not ready to join the Psychic Friends Network!!

I'm part Mexican...with a name like Shanna Grimes, it doesn't sound like it.  My grandfather was actually born in Chihuahua, MX.  I don't speak Spanish fluently, but I understand quite a bit.  I couldn't carry on a conversation to save my life!  I can cook Mexican food well, or so I've been told.  I make my own salsa, I make Tamales every year for Christmas, Enchiladas with my homemade sauce, Albondigas, Flautas, Emanadas and tortillas.  I'm not very good at my tortilla making.  It's actually quite difficult.  I'm sure I'll master it like my grandma someday.  She has been making tortillas for more than 70 years.

I have a tatoo on my back of this symbol:

I got it when I turned 18. It is meant to symbolize my lifetime love of Led Zepplin. Yes, I was quite the rocker when I was younger :) I still love my Zep, along with many classics. The Beatles, The Stones, Hendrix, The Doors, the list goes on...My mom says I was born in the wrong time. I am kind of a hippie by nature, so I like the music from that era. I never wear socks, I wear natual colors and sandals all the time. I am kind of a tree hugger, so naturally this type of music is appealing.

OK, off to check everyone else's answers.  I'm usually the last in the group to blog, since I am on the west coast and everyone else is three hours ahead of me.

Kidney Stone? (update)

Gotta love those times when you just allow yourself to be sick and not be on a forced march.  Thanks to my mom and my hubby, I was able to get the rest I needed to recover from my kidney issues.  I am feeling a lot better, but still not all the way there yet.  I am still getting the occasional stabbing pain, but think it's possible that I actually passed the stone on Monday, because I was in a lot of pain that day.  The antibiotic has really been working well, since most of my flu symptoms have subsided.  I still feel weak and sore through my back and abdominal region.

I get to go have my renal system on TV tomorrow.  They pretty much torture you prior to the test.  The say: 

Fast after midnight, water only

Then go for your morning tinkle

Then go again two hours before, then no more tinkling  

Then an hour before, pound 40 oz's of water and hold it all in

If this were college and the water was Mickey's, hey, no problem!  I could hold that like no body's business.  Who wants to use the restroom in a frat house?!

But for someone with a UTI, this is like torture.  I have gone more times than a pregnant woman over the last few days, so you can imagine what holding back the flood gates will feel like while they are pushing on your full bladder.  I will probably look like Forrest Gump after he drank 15 Dr. Peppers.  Hope I don't accidentally hose down the technician :)

Kidney Stone?

Ok, so I wasn't feeling too hot yesterday, and I decided to make an appointment.  I have flu-like symptoms, aching kidney's and the occasional jabbing pain in my flanks.  When I went in to the doc, I thought well, maybe I have a bladder infection or kidney infection.  I described my symptoms and she said "I think they are kidney stones.".

I do know a little a about them.  My dad had them a while back when he was here.  I have heard they are pretty painful.  She ordered some more tests and an ultrasound to confirm.  She said that I have to pee through a pulp strainer and drink gallons of water.  She also put me on an antibiotic.

My mom is here helping out.  The doctor said there was some risk of me needing surgery or an emergency room trip, so I felt more comfortable with her here with the kids.

I'm feeling a lot better today.  No fever today, just weak and sore.  I hope it goes away soon.

vEEG Update

We just got off the phone with the tech.  We are scheduled for Nov 10th for a 24 hour overnight.  I know it seems like a long time from now, but when it does happen, hopefully it will be a vindication that the worst is behind us.  Kaylee is continuing to make progress and we are hopeful that she will be walking in the next couple of months.  

Sensory Garden

Last week, our new behavior specialist recommended that we have a sensory room or station for Javi and Ethan to decompress and get sensory input. I kinda took that idea and ran with it. Why make a just a station, when we can make a room. It's actually something I had planned on doing when we moved in to our new house (which will hopefully be soon. I am starting to look again). Eventually, we plan to move this room in to our garage. A neighbor of ours, built a sensory gym for their son in their garage and it looks quite nice. They have a trampoline, a sensory swing .and basically what looks like a preschool classroom. We are still looking at trampolines, swings, and possibly a plasma car, but will probably wait on some stuff until Christmas since they can be used as fun items and sensory integration. Here is what we have done with the room:

We have a "sensory table", which is a 30" square play table for cars and train sets.  It has a lip around the edge of the table, so it works great to use the sensory play things like rice, beans, shaving cream play, and moon sand.  We have large storage tubs that fit perfectly under the table full of that stuff.  The car and train sets are easily set up, since we always keep the table empty and put them away when they aren't in use.  If we leave them out, Kayleezilla breaks the sets apart, so that's why it's easier to put them away.  The pieces end up all over the house. The sets are in the red buckets on the bookshelf for easy access.  The white drawers have all our art supplies and the tall cabinet with the doors have our larger toys, like fire engines and dump trucks.  The open wire shelf is actually a shoe rack.  All the shelves and cabinets have picture labels so everyone puts the items back where they belong.  It's working very well.  Ethan is used to the picture labels in preschool, so I thought it would translate very well at home.  Also, daddy has no excuses for not knowing where things go.

We have an art and board game table with our new stools.  It's actually a coffee table I found in the "as is" section at IKEA a while back.  We previously used it as a stand for the video game TV, but that has since broken along with the game cube, so our only source of games is the Wii on our family room TV, which is plenty!! The spinning disk (green and red thing) was also an IKEA find and provides good vestibular input, along with the red rocking horse.  They were very inexpensive too.

 

This is the "chillax" station.  The basket has a number of different sensory toys.  It also has Javi's ankle weights, weighted blanket, chew toys, "fidgets" and "rubbies" (for the skin).  The bean bag also provides stimulation.  This is the area we use in lieu of time outs.  Usually, when Javi has behaviors, they are due to over stimulation or under stimulation, so this is a nice place for him to get the input he needs, relax and refocus.  

The textured circles in the basket were also an IKEA find.  We can play "sensory scotch".  It's heavy work, combined with the input from the different textures on the circles.  Staying on the circles is also good for focus and concentration.  The hopping itself is great for motor planning.  

Can you tell we have had a lot of OT??  

I'm happy with the way the "sensory garden" turned out, which I give full trademark to Cody's mom, Shauna, for the use of that name.  Mark and I just thought that name was so cute and the kids really like the name, so it stuck.

Frustrated

I am so frustrated with the EEG department at our Children's. We have been trying to schedule an EEG for nearly a month now. First, the doc said we had to wait for approval and they would call when it was approved. So me, trying to be patient, I waited two and a half weeks to call to see what was happening. I called the insurance group to see where we were at and they said, "Oh, you don't need approval. You just need a referral." UGH!!

So I called the doc, they transferred me to the EEG department and gave me the direct phone number. Well, that was on Monday. Left a voicemail, no call back. Wednesday, left another voicemail, no call back. Thursday, called again, then got voicemail and decided to press the extension for emergencies or immediate contact and it kicked back to the same voicemail!!!! Ahhhh!!! So then, I hung up and called the neuro's assistant. I got her voicemail. She did call back an hour later and said she tried to contact them, but they were gone for the day. She asked me when I would like to be scheduled, in case she could just make the appointment for me when she called them this morning. To which I said, ASAP, just needed a 24 hour notice to arrange for childcare.

The assistant did call me back this morning while we were in therapy and got my voicemail. She said that she spoke with a tech and that they would be calling me this afternoon to schedule. Well, guess what????

NO PHONE CALL!!!!!!!!

If it's taken me a week, just to try to get a hold of them, and still unsuccessful, it may be a month before we can actually get an appointment. I'm ready to just go down to the hospital and demand an appointment.

We won't forget

Cooking with kiddies

We made chocolate peanut butter cookies with kisses on top.  It was fun.  Javi did a perfect job cracking the eggs again and Ethan just loves using my Kitchen Aid mixer.  He knows exactly how to use it too.  He raises the bowl and starts it off slow just like I taught him.

Yay!  I finally got a good pic of Javi too!!

BTW...the kids had their school pics already, Ethan's was today and Javi's was last Thursday, so family, you will finally get some new portraits of the kids.  I'm going to take Kaylee to get her 1 year portraits done (now that she is almost 14 mo, better late than never).

Show your support!

Our friends the Foltz family, just received news that their son Trevor has had a return of his infantile spasms.  Trevor had gone through a round of ACTH right around the same time as Kaylee and was seizure free for about eight months.  Danielle (Trevor's Mom) had testified in front of the JEC in Washington in July about the price gouging of ACTH by the pharmaceutical company, Questcor that manufactures the drug.

As you can imagine, they were devastated by not only by the news of their son's return of Infantile Spasms, but also torn by the fact that the drug they are recommending, once again, to treat his infantile spasms is ACTH. 

Yet again, they are having to deal with the same hurdles they went through with the first round of ACTH.  Questcor makes the process of obtaining the drug so difficult.  Not to mention the cost takes a significant chunk out of Trevor's lifetime insurance cap at 17 months old.   This is a drug that just a few years ago cost around $1500 per vial, now costs $25,000 per vial.

Today she posted an open letter in response to new the CEO of Questcor, Don Bailey.  Please take the time to visit her blog and post a comment to show your support.  Our hope is that by getting the word out, Questcor will do something to facilitate change in policy of obtaining the drug or lower the price to make it more accessible to all that suffer the devastation of infantile spasms.

G5 Progress Report

Just wanted to give a brief update on how we are doing three weeks in to our new school/therapy year.

Kaylee has in-home early intervention therapy on Monday's and Thursday's. They work on pre-language, play skills and also reinforces the homework we receive at our OT and PT apppointments. She has Physical Therapy on Tuesday's. They work on strengthening her entire body since she has low tone through out her body. She has Occupational Therapy on Friday's. They work on her fine motor, mostly visual motor, such as feeding and putting toys in and out of buckets and such. 

Our schedule is pretty full, but we do get a break on Wednesday's which works out well. It's right in the middle of the week, so we can do girl things like shopping and playing. We have floor time to reinforce all the things that we have worked on in therapy for at least an hour a day. Many of the things Kaylee works on in therapy, she does on her own. She is a very motivated little girl.

Ethan is doing great! He is really doing well in his new inclusion program. He is in a class of 14 students, including him. There are four girls and ten boys. Ethan knows all the names of his classmates and even made a book about them. Ethan is learning to write his name. He is great at spelling it, we are still working on the correct formation of the letters, but he is really making progress. He has really come along with gripping crayons and pencils and he loves to do art in class. I met with Ms. Danielle last week for a conference and she said she just loves him and he is a pleasure to have in class. Ethan does need a little extra time to process language, so she gives him an opportunity to come to his own conclusions about things, which is a great reinforcement when we begin RDI for the boys.

Ethan is learning phonics at home and is doing quite well. We work on phonics about three times a week and we work on writing almost every day. He and Daddy color together almost every day too. Last night they watched "The Upside Down Show" on Noggin and did "Action Fingers" just like Shane and David. It was pretty cute.

Javi is doing awesome in his new program. We had a rocky start and we were really unsure of placement at first, but he is working things out. He is really getting adjusted to his new routine. He really has a busy schedule at school. He does a lot of work independently and is expected to do many tasks unprompted. He gets off the bus on his own and goes directly to the playground, then lines up with his mainstream class. He does inclusion in the morning for the first 15-20 minutes of school, which means he gets to go to a mainstream third grade class. Then he goes to his NSH class where they have a very busy schedule with a mix of different activities. He plays and eats lunch with kids in his mainstream class. He also does art rotation and will soon do computer and library time with the mainstream classes. 

I was exhausted just hearing about the schedule at Back to School Night, so I can only imagine how he feels doing it. He comes home in a good mood every day, so I take it he is enjoying it. He has made some new friends too, so we are happy everything is working out so well for him now.

We had a sleep over with Noah this weekend, where Javi got ready for bed with out any prompting at all. He went and got his PJ's, kid pull up, and brushed his teeth with out any verbal cues. Typically, Javi will try to get ready on his own, but will typically need refocusing, such as a reminder of where his PJ's are, brushing teeth or where to find his "underjams". Yesterday, he also worked through his homework independently with very little help.  

Javi has behavior modification on Wednesday evenings. This is really therapy for me, since she mostly works with me, making suggestions and tracking progress.  We met with our new behavior specialist last week, and she was great.  We really did not work well with our last consultant, so we are happy to have some fresh ideas with our new consultant.

We are very proud of all the kids and all the progress they have made.  It's really amazing to see them adjusting so well to so many changes.  Mom and Dad are still having trouble adjusting to such a full schedule!!

Ethan's Photo Gallery

My little sneak thief, Ethan decided to play iSpy with my iPhone camera. Let's see what he spies with his little eye...

Hmmm...think he left some evidence.  I know those little piggies!

He spies Kaylee playing in her toy basket.

He spies mommy's sink.  Good thing he's short, otherwise, you would spy my silhouette in the shower!

He spies Kitty doing her morning yoga.

And finally the front door.  

It was a good thing I took a quick shower.  My little camera man let quick crawl Kaylee out of the coral when he left the bedroom door open to snap pictures.  I caught her making her way for the stairs and Ethan was screaming "Mommy, mommy!!  Kay's going downstairs!!!"  He was chastising Kaylee saying she was a bad girl for going out of the room and trying to go downstairs with out mommy.  Ha! Nice try kiddo!  Time for the kiddie coral to make it's way up stairs.  We used to have a stair gate at the top (still have one on the bottom), but it's too hard for Ethan and Javi to open, since their fine motor skills are not the greatest.  Obviously, we don't want them trying to crawl over a gate at the top of the stairs, like they do with the one on the bottom.  Thankfully, we are really not using the kiddie coral downstairs, so it would work much better in our master bath.  It's either that, or skip my morning shower, which I don't think anyone would appreciate, especially, Mark!

Hard at work with the OT

This is the life, eh? As you can see, she loves working with Ms.
Melissa.

Kaylee Signs

We have really been working on the signing.  So far we have two signs down.  We just started, so that is not too bad.  She does these two on voice command only.  We have been using Signing Times. We still don't have many words yet, in fact she is only making the "ma ma", "da da", "ooo" and "hmm" sounds for the most part. We get an occasional "ga ga" and "ba ba". She seems to be saying ma ma and da da discriminately, since she says it when ever she sees either of us. We are hoping that with the use of the signing, it will reinforce the speech.

Soups On!

Today was another one of our cooking days.  I try to do a little "cooking class" with the boys at least once a week.  It really helps their sensory issues, builds self esteem, sense of teamwork and following instructions.  Best of all, it gives me a little extra fun time with my growing boys who will some day leave mama's nest.  At least I will feel better knowing they will always know their way around a kitchen, so they will never starve!  

We made Chocolate Marble Banana Bread.  It was Javi's job to read the first four ingredients. As you can see, with the little pics, the last four ingredients were for Ethan's part, since he is just learning to read.  They did an amazing job taking turns pouring in the different ingredients, mixing, and really following the recipe.  Each of them got to crack an egg (of course we cracked in to a separate bowl, just in case the shell fell in).  Javi managed to crack the egg perfectly this time with our little tap tap crack song.  NO SHELLS IN THE BOWL!!

Ethan had a really good time mashing the bananas.  Here he is mashing away.  The ever illusive Javi managed to sneak out of the picture just as daddy was snapping it!

Here's the finished product.  Javi wouldn't try them because he said they smelled funny, which is unlike Javi.  He's not real big on sweets, which is fine with me.  He prefers hard candy if he does have a sweet tooth.

Of course, my little sweetie, Ethan, could barely wait until they came out of the oven!  He would have eaten the whole pan if I let him!  It was so cute to see them patiently staring at the oven like it was a TV set, watching the muffins go from goo to bread.

Then we worked on the next cooking project, Chicken Gumbo.  By this time, Javi was totally bored with cooking and was on to the next activity, but my "lil chef" Ethan was there to lend a helping hand.  I was teaching him all about the different ways to chop and what each was called.  He learned julianne, dicing and mincing.  I even let him do a few hand over hand chops.  He learned how to clean celery, how onions have layers, and how the outsides of onions feel kind of like paper.  He also learned the hard way that onions give off a gas that turns the moisture in your eye in to sulphuric acid and that's why your eyes burn when you chop onions.  Just a trick, if you run water or boil water near where you are chopping, it will lessen the effects of the onion because the gas will be attracted to the moisture.  I think I learned that trick from reading the book "Like Water for Chocolate", one of my favorite books, besides the Harry Potter series.  

Ethan learned all about making a roux, and how important it is to stir it, which was his favorite part (I had the heat off when he stirred).  He just seemed to, if you will pardon the pun, eat up every piece of info I gave him.  I think we have the next Food Network Star in training here :)  I guess I was a regular "Lady and Sons" today!!  Which by the way is one of my fav's on Food Network and where I got the idea to make gumbo today.

My inspiration for making the chicken gumbo was due in part to my neighbor, Andi being in the hospital.  Her kids spent the night last night while her hubby took her to the ER.  They ended up admitting her due to a ruptured appendix.  Ouch!  

I knew she would need some good ole comfort food while she was on the mend, so we made this dish because it freezes very well.  I hope she gets well and comes home really soon!!  Until then, we'll make sure her kids and hubby are fed and cared for.  We sure enjoyed having it for dinner too!  I made enough to feed a small army.  

Who knows, maybe the boys and I will make a cookbook with all our little recipes :)

 

Night Out

Well, a night out with my friends turned out to be more than I bargained for.  I did have fun, we played darts, we laughed and chatted.  The little I had to drink just didn't seem to agree with me.  Guess I am getting old, because it seems like every time I have more than one drink, it makes me sick or terribly hung over or both.  I can't seem to stomach it.  Oh well, guess it's good that I have fun with or with out drinking.  

I suppose it didn't help that I didn't eat dinner before heading out.  I was so full from eating a hamburger that afternoon, I didn't really eat dinner.  I did snack on some rolled tacos while we were out, which also happened to be meat filled.  I had a hard time getting through them because I am just getting adjusted to eating meat again.  I think it could have been combo of everything that did it.  At any rate, I think I will take it easy on the meat and on the cocktails from now on :)  I just can't afford to loose time by illness that is completely preventable.

Thanks to my honey for taking care of me and the kiddos.  I owe ya one, babe!