Spellman's Magical Spectacular

We had a great time at Spellman's Magical Spectacular. We went to Rubio's for dinner for some tacos before heading over. They had a Round Table Pizza stand there and Mowie Wowie smoothies and coffee, but I decided it would be best not to fuss with trying to lap feed the children. It was hard enough for me to get all the kids, lawn chair, double stroller and blanket set up by myself, so we left early and went to a sit down din din. Mark skipped out on the show, since he is still getting over his cold.

We met Acho and Brianne there (Javi's dad and other mama). It was nice to get to hang out with them. They are a great help, especially when I have the whole heard with me :) Ethan calls Acho "Aita" (Basque for dad, pronounced 'eye-ta') also. I don't think he knows that isn't his name. Whenever he comes to pick up Javi, Ethan always says "Hi Aita". Acho just goes with it and usually laughs. They are just like extended family and I am glad that we are all able to hang out together.

It was a little chilly being out on the blacktop. The show ran a little late, so we took off before it was over. The little ones were not going to make it until the end. Javi stayed with his Aita and Brianne.

We did take a couple pics and I posted them to Flickr. You can click on the Flickr badge I just added to see the pics, but here is one of them. There's a couple cute ones of the boys. Glad the kids had a good time.

CNN News about Autism

This sounds all to familiar! When Javi went through everything, we were pretty much told the same thing. You could have taken this out of our diary.

ATLANTA, Georgia (CNN) -- When her son Justin was a newborn, Shannon Kinninger looked up from the kitchen where she was washing dishes, and saw a large, heavy toy fall on his head. Justin didn't cry.


Shannon Kinninger feels her son Justin's autism diagnosis was delayed.

Kinninger thought that was odd, and it wasn't the only thing that seemed strange about Justin. At her weekly playgroup, she watched the other babies hit their developmental milestones more or less on schedule. Justin lagged far behind.

"When he was supposed to be sitting up, he wasn't sitting up. When he was supposed to be holding his head up, he wasn't holding his head up. When he was supposed to be rolling over, he wasn't rolling over," says Kinninger, a nurse who lives in Fayetteville, Georgia.

Kinninger brought up her concerns to her pediatrician, but he told her not to worry. "The doctor kept saying that boys develop more slowly than girls," she says. "He kept reassuring me he'd be OK." more...

Playtime with Pooh Bear

This is my first time uploading a video to the blog, so I hope it works out. They were so cute playing together. He hasn't really been able to play with her since he got sick (I have been quarantining them). I let them play since he wasn't actually touching her and Kay thought the pooh bear puppet show was hilarious.


Ethan is finally feeling a little better. His eyes are still irritated and his nose has been running like a sieve, but he may be ready to go to school tomorrow. We will see how he feels in the morning. I know he is still sick because he took a four hour nap today and he hardly ever takes naps anymore, so that is a long nap for him. He was feeling better this evening, but we'll see if he wakes up with his eyes gummed shut.

Unfortunately, I have pink eye now. I will look nice and hideous for the next couple days. I started the antibiotics today, basically as soon as I started to feel it coming on. My eye hasn't been that red or gummy, but I have that "poked in the eye" feeling and they itch like crazy. More so in my left eye than the other. Ethan's doctor was nice enough to give us a refill on the antibiotic eye drops because he was positive either one of the other kids would get it or Mark or myself. Mark is still sick with his cold. Javi's lip is doing much better. The Aquaphor seems to be doing the trick. Hopefully we will all feel well enough to go to the Magic Show tomorrow night.

Pink Eye Monster

Ethan is having his second stint of pink eye in a month. Poor little guy! It started out as a cold and then turned into pink eye. He had the same thing about a month ago when he first started preschool. I know every kids goes through the sick66 (sick six times the first six months) when they first start school, but Ethan is just getting pummeled. He gets one after another. After the first week of school, he got three different illnesses in a row and was sick for 10 days. I am just hoping he is well by spring break so we can do something fun.

It has definitely been tough keeping everyone well. All three kids and Mark are not well. Javi with the lip (see his blog), Ethan with the cold and pink eye, Kaylee with her teeth and I think she may also be coming down with something, and now Mark got taken down with a cold. Everyone was home today. I didn't sit down hardly at all today. Every two minutes someone needed something, so it's nice to relax now. I have to stay well, at least until everyone else gets well :)

Happy Easter 2008

I hope everyone had a nice Easter weekend. We had a nice time. We went to church with friends and family. It was nice because we just watched the service from closed circuit in the church's coffee house which looks like a Coffee Bean or a Starbuck's, but called the Cana Cafe. It's funny because their slogan is "Never Luke Warm, Verse 3:16" and it says it on all the cups. We just noticed it for the first time yesterday. They have a train table in the cafe so it makes it easy to take the little ones. We can enjoy our coffee during the service. What a great idea!! So accessible to families with little ones who get so little time to relax. It's nice to listen to the music and socialize during the first 30-45min, then listen to the sermon for the last half. Gotta love those churches who are really up to date! It's a sign of the times. Make your religious services fit in with your typical lifestyle and more people will come. It's fantastic!! They even podcast and stream the service!! Too funny, here is their website. We just started going there about 6 weeks ago. I was raised catholic, but it's a nice change. They are really accommodating to the families with children with special needs. They have a care center for children and young adults. It's more geared toward the moderate to severe, but it's nice that it's offered. I am sure that may be the only break some of the parents get from caring for their SN children, so it's nice.

Here are some pics from earlier in the day, I will upload the egg hunt pics later tonight. Click on the pic to take you to the Flickr Photo Set. They are from my real camera, so I haven't off loaded them. These pics were just the ones off my iPhone.

www.flickr.com

Yesterday was a Bad Day!!

Yesterday was one of those days where you wish you could just hit the reset button. Let's see, started ok, but quickly turned in to a disaster. We have had a lot of fraudulent activity with our accounts, since our credit report was stolen from a mortgage lender credit check service when we got pre-qualified for a home loan about 18 months ago. Since then it has been a non-stop battle to keep identity theft at bay.

Well, our Best Buy account was one of the 5 accounts effected and we have had a lot of problems mitigating the account since then. We no longer use the account, but we still maintain a balance because we purchased quite a few major appliances from there. We have had our account number changed several times which doesn't do a bit of good protecting us because they stole our credit info with our SSN's. All they have to do is run another credit report and they will have the new account number. Anyway, Mark had a phone call at work yesterday saying our account was in collection. It is an account I maintain, so he called me and told me to handle it. I knew this wasn't possible because I had just made a large payment at the beginning of the month. I called customer service immediately, and just as I had said, the account was up to date, no payment due. I kept hitting 0 until it transferred me to customer service. At that point, I was transferred to a woman who barely spoke English. I realize that most customer service centers have been transferred over seas because labor is cheaper, which I realize it helps them out with jobs, but c'mon!! This woman barely spoke English and she is dealing with people that are usually already upset, not only from going through the useless automated menus, but from the problem they are calling with to begin with. Then you have to speak to someone that is worse at understanding them than the AI automated menu!!!

After 35 minutes of telling her exactly what I thought the problem was, her every two second reminder of "just a moment while I review your account", which I am guessing she kept telling me because she thought my English was as bad as her's, and two times of being placed on hold, I was finally transferred to a supervisor because it was just to complicated for the lady I was talking to. She told me that 'the account was in collection because I had fraud and that I should pay closer attention to my statements with my Best Buy account.' WTF????? First of all, I have paperless billing, which pretty much tells me to log in to see the statement. Well, with a freeze on the account and me only making payments, why do I need to look at a statement?? I pay the bill when I get the email reminder and I usually get a "Thank you for your Payment" a couple days later, so why would I have any reason to suspect there was a problem??

Anyway, I got transferred to the supervisor and we figured out the problem (well, I told him what I thought the problem was and he verified). Our payments were being made to the old account (they changed our account number about 4x's from the fraud). So, he transferred all the payments I had been making to the new account and removed all the late fees. He also said he would send a letter to the credit agencies to fix the 30 day late notices. It got taken care of, but it was an extremely frustrating process.

By that point, we just had enough time to eat some lunch and head to pick up Ethan. Javi was at home with me because his lip was still really swollen. We made plans to go get some ice cream after picking up Ethan from school. We pulled up to the ice cream place. The lot there is pretty tight. I was trying to be nice by letting the car in the adjacent row out before I tried to park my monstrous SUV. Well, I was a little cockeyed half way in a parking space and I had checked my rear and was staring in my rear view as I was backing out, but there was a Mercedes in my blind spot and I backed right in to him. It was totally my fault because he was in my blind spot and I was in motion. There wasn't much I could have done about it. It was just bad timing. He came around the corner just after I had checked my blind spot. The kids were going nuts yelling "what happened?". Javi is hanging out the window yelling and I am frantically looking for my insurance card. The gentleman I hit was very nice, so we just exchanged insurance and left.

Well, that was a $500 mistake!! Needless to say, yesterday was just one of those days!! There are many of those days when you have SN children, but this was above and beyond the usual. Kids were in complete meltdown when we had to leave the yogurt place empty handed, which added fuel to the fire. I was ready to just give up and go home and go to bed, but we persevered. We went to the park so I could deal with the insurance and keep the kids occupied then we went to the McDonald's drive thru for a sundae. Ended on a sweet note and kids were happy, so what more could I ask for?

Irish Giggle, a little dirty, but no profanity

Ok, so this joke is not for the kiddies, but I thought it was pretty funny. My neighbor sent it to me. It's not for the easily offended. So, if you are easily offended by marital "between the sheets humor", STOP READING NOW!

Voted Best Joke in Ireland

John O'Reilly hoisted his beer and said, "Here's to spending the rest of me life between the legs of me wife!"

That won him the top prize at the pub for the best toast of the night!


He went home and told his wife, Mary, "I won the prize for the Best toast of the night"

She said, "Aye, did ye now. And what was your toast?"

John said, "Here's to spending the rest of me life, sitting in church beside me wife."

"Oh, that is very nice indeed, John!" Mary said.


The next day, Mary ran into one of John's drinking buddies on the street corner.


The man chuckled leeringly and said, "John won the prize the other night at the pub with a toast about you, Mary."

She said, "Aye, he told me, and I was a bit surprised myself. You know, he's only been there twice in the last four years. Once he fell asleep, and the other time I had to pull him by the ears to make him come."

Wine Tour

  

We had a really good time on our tour of the Temecula Valley Wineries.  We went to Wilson Creek, South Coast and Faulkner.  I am a white wine drinker and my husband is a red wine drinker, so tasting works well for us because we can get different wines.  We love tasting, since we enjoy wine, but can't polish off a bottle together.  The scenery is beautiful and it's nice to pretend like we are on a real vacation, even if it was just for a few hours.  It was nice to get out with friends and not have to worry about who was driving.  I found a new drink that I absolutely love.  It's almond champagne.  It sounds weird, but it's delicious.  It pair well with sweet fruit.  I had made up a tray of cheese, fruit, and lunch meat for the limo, which Amber so generously funded all the food.  I just picked it up and prepared it.  It was a nice day. 

 

We ended the day with appetizers at Rock Bottom, which unfortunately gave Amber and I food poisoning late last night. Only Amber and I had it and there were only three of us that ate  at Rock Bottom, so we are positive it was the nachos we ordered.  I was sick to my stomach all night long and it even carried in to today.  I haven't eaten hardly at all today. 

The kids did great with Grandma.  My mom actually called mid day to tell us that Kaylee polished off her first bottle and actually held it herself.  She slept about half the time we were out.  The boys were fantastic.  They actually didn't fight all day long, which is a first.  Our biggest surprise was Javi.  Javi missed us the most out of the whole bunch.  He asked Grandma a few times when we were coming home.  He said, "Boy, they sure have been gone a long time.".  Being the oldest, I thought he wouldn't care if we were there or not, since he likes to do his own thing most of the time.  He is getting to that point where it's not as cool to hang out with mom anymore.  I am so glad they did well.  We are already planning our next outing, which will be dinner, just the two of us!  Amber has so graciously volunteered for the next babysitting round.

Potty Time for Ethan

Ethan went #1 and #2 for the first time on the big toilet all by himself!!  Hooray!!  He went #1 at school yesterday, so we are getting that much closer to being out of pull up's.  I am so proud of you, Ethan!!  He was really proud of himself too.  We called just about everyone we could think of so he could tell them how he went pee and poop on the toilet.

Great job and keep up the good work!!

Our big day at the dentist

Well, today was, let's face it, terrible!  Started out bad, so I should have known.  Ethan was in full scale meltdown mode from the second he woke up this morning.  He did manage to make it to school on time, despite the meltdown.  He had a great day at school, but then it was time to go to his first dental appointment.  He was fine with going, even happy about it.  We were going to try to go feed the ducks before our appointment, since the dentist's office is set on what we have always referred to as "fake lake".  It's a man made pond in Webb Park in Rancho Bernardo.  It's a very beautiful peaceful setting.  Perfect location for a dental office.  Unfortunately, the ducks had flown the coup.  I guess they are still on winter time, even though it's 72 degrees in San Diego. 

After discovering that the ducks had flown south, we decided to go play in the dentist's office.  They have toys, a video arcade and kid's movies on all over the office.  On the way in, Ethan tripped and fell flat on the asphalt.  He took a small chunk out of his elbow, and was bleeding everywhere.  He was naturally, screaming bloody murder, totally acceptable for that type of injury.  To add to it, Javi hates the site of blood and was having one of his freak outs.  Probably worse than normal, since he had some anxiety about going to the dentist.  Kaylee was in a carrier strapped to my chest, so she had to put her two cents in too.  I was ready to have a meltdown myself!  I must have looked like a complete nutcase to all the people that saw us.  I was trying to calm Ethan, get him cleaned up, while Javi was flipping out and not following directions.  I know I should have stayed calm, since it wasn't doing any good to raise my voice to Javi to follow directions, but it was just one of those situations where I totally lost it.  Hey, we all have them at one time or another.  

I did manage to get a towel from the office to get Ethan cleaned up.  We went outside until he was calm and ready to go back in.  At that point, I was ready to cry.  Everyone was staring at me and I felt like a complete psycho for having lost my cool.  I am not normally like that, but I have been noticing that my moments of insanity have been more frequent lately.  I think having SN kids really takes its toll on you.  

My husband and I haven't really had a break in a while.  We haven't actually been on a date in about six and a half months.  We have gone out for coffee a couple times for an hour or less while Kay was on ACTH, but that's the extent of it.  Fortunately, we are getting one this Saturday!  Couldn't have come a moment sooner!  We are going on a 5 hour wine tasting event on Saturday for a friend's birthday.  We are taking a limo to a few different wineries.  Ahhh...no children, no ABA, no tantrums (at least I hope not).  I can't wait!  Most important it will give my husband and I a chance to socialize with other couples as a couple.  It will give us some quality time together, doing something other than raising children, working and keeping a house.

Mmmm...peanut butter!

It's easy to see Ethan's favorite thing is peanut butter. He looked so darn cute eating it.  He just licked the bread clean. 

Vaccine settlement complex, may not be first

On April 2, CNN will report on the global impact, latest science and controversies related to autism for the first "World Autism Day." Watch for coverage on CNN.com and CNN TV.

ATLANTA, Georgia (AP) -- For those convinced that vaccines can cause autism, the sad case of a Georgia girl, daughter of a doctor and lawyer, seems like clear-cut evidence. The government has agreed to pay the girl's family for injury caused by vaccines.


Hannah Poling's parents, Terry and Jon, allege that vaccines played a role in Hannah's autism.

But it turns out it's not that simple -- and maybe not even a first.

The 9-year-old girl, Hannah Poling, had an underlying condition that may have been worsened, triggering her autism-like symptoms.

Her parents believe it was the five simultaneous vaccines she got as a toddler in one day eight years ago that did it. Government scientists say something like a fever or infection could have set off the problem -- but they didn't rule out the vaccines either.

This week, government officials said they have agreed to pay the Polings from a federal fund that compensates people injured by vaccines. The amount is not yet determined.

While parents and advocates for children with autism say the case is a landmark legal precedent that signals the government is finally conceding potential autism-related risks from childhood vaccines, government officials are saying it's nothing of the kind.

"This does not represent anything other than a very special situation," said Dr. Julie Gerberding, head of the U.S. Centers for Disease Control and Prevention.

Her comments came after the Polings, from Athens, Georgia, held a news conference Thursday to talk about their daughter, who accompanied them. At the briefing, Hannah seemed socially engaged with her caregiver, but later in an appearance on CNN's "Larry King Live," she was quiet and seemed to be in her own world. Larry King Live goes behind the scenes with the Polings »

As a toddler, they said she was a bright, normal-behaving child until she got five shots when she was about 18 months old. She was a little behind on her vaccinations, so the decision was made to give her five shots.

Almost immediately after, she was screaming, feverish and irritable. Then, her behavior gradually changed so she would stare at fans and lights and run in circles.

"It wasn't like a switch being turned off. It was more like a dimmer switch being turned down," said Hannah's father, Jon, a 37-year-old neurologist. Paging Dr. Gupta blog: Parents still see good in vaccines

It was heartbreaking, said her 47-year-old mother, Terry, who is trained as both a lawyer and a nurse.

"Suddenly my daughter was no longer there," she said.

The family filed a claim with the federal vaccine compensation program in 2002, which the government ultimately decided to concede before any evidentiary hearing.

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Parents share pain of daughter's decline
WebMD: A pediatrician's thoughts on vaccines and autism
I-Report: Are you living with autism? Tell us your story
Autism Speaks: Advocacy, awareness
The case may not be a first, said Gary Golkiewicz, chief special master for the U.S. Court of Federal Claims. He oversees the special "vaccine court" which rules on requests for payments from the vaccine injury fund.

"Years ago, actually, I had a case, before we understood or knew the implications of autism, that the vaccine injured the child's brain caused an encephalopathy," he said. And the symptoms that come with that "fall within the broad rubric of autism."

And there are other somewhat similar cases, Golkiewicz says, that were decided before autism and its symptoms were more clearly defined.

Hannah has a disorder involving her mitochondria, the energy factories of cells. The disorder -- which can be present at birth or acquired later in life -- impairs cells' ability to use nutrients. It often causes problems in brain functioning and can lead to delays in walking and talking. I-Report: Are you living with autism? Tell us your story

The Polings were exploring two theories to explain what happened to Hannah. One is that she was born with the mitochondria disorder and the vaccines caused a stress to her body that worsened the condition. The other is that the vaccine ingredient thimerosal caused the mitochondrial dysfunction, Jon Poling said.

CDC officials decline to talk about the Poling case, but they say it should not be used to draw conclusions about risks for other children.

Scientists believe that in cases in which a mitochondrial disorder causes a child's brain function to deteriorate, the disorder exists and then is worsened by a fever, infection or other stress on the body.

Scientists don't know if a vaccination -- independent of fever or infection -- can cause such a stress, said Dr. Edwin Trevathan, a pediatric neurologist who heads the CDC's birth defects center.

Others echoed his assessment.

Health Library
MayoClinic.com: Autism
"There are no scientific studies documenting that childhood vaccinations cause or worsen mitochondrial diseases, but there is very little scientific research in this area," said Chuck Mohan, executive director the United Mitochondrial Disease Foundation, a Pittsburgh-based group that raises money for research.

Mohan said there are more than 100 types of mitochondrial disease, and genetic tests can find only a couple dozen.

"Most children with autism do not seem to have a mitochondrial problem, so this association ... is probably relatively rare," said Trevathan.

Some research suggests the disorder occurs in one in 4,000 births, but some experts believe the rate is closer to one in 2,000, similar to childhood leukemia. And it is often just as fatal, said Mohan, who lost a daughter to the disease in 1995.



Other federal vaccine advisers seek to portray Hannah Poling as an isolated if not unique case.

She is "not a typical autistic child," said Dr. Paul Offit, chief of infectious diseases at Children's Hospital of Philadelphia and a longtime government vaccine adviser. "It's not a precedent-setting case." E-mail to a friend

Serengeti Smiles at the SD Wild Animal Park

We had a great time today at the Wild Animal Park.  My sister and her husband are in town from Mariposa, a little town right outside Yosemite National Park.  It was a beautiful San Diego day, so we decided to jail break the kids from school early and head out to the park.

We got to see a baby giraffe, only one week old.  I missed the shot, but not two seconds after I snapped this first pic, she started kissing and nuzzling her baby.  It was too cute.  The baby was up and walking around, hard to believe that they walk moments after birth.  I think I would go nuts if my kids fell out of me and started walking.  Good thing giraffes don't have to worry about child proofing!!

The pic of Ethan and I was also taken on the tram.  Ethan was showing off his knowledge by naming every animal he saw.  "Look mom, a rhino", "Look mom, an elephant", "Look mom, a cheetah", he never got bored of pointing everything out.  He sure knew every animal.  Guess all those times we read "All the Ways I Love You" paid off.  There is a different zoo animal and it's mommy on every page.  

Next pic is Kaylee's first sample of soft serve ice cream.  She loved it!  She is teething, and was a little fussy.  I thought the cold would feel good on her gums.  Yeah, I know we shouldn't give it to her, but she loved it so much and it was cute to watch her open her mouth like a little bird for the next bite.  It did calm her down and make her forget about her teeth.

Last pic, my two little kongs.  I had mentioned to my sister that the gorillas had flung poo into the onlooking crowd once when I was at the Wild Animal Park.  Well, you know seven year olds and poo.  Javi caught the tale end of the conversation and just ran with it.  It was poo this and poo that.  He even asked me if the little girl next to us was crying because a gorilla flung poo at her!  Gotta love seven year olds!

Ethan was feeling a little tired and grumpy towards the end of the day and I had Kay strapped to me in the carrier asleep.  It took some convincing to get him to leave.  The only way to get him to walk out was to race.  So here I am with Kaylee strapped to me racing my three and seven year old uphill.  She slept through the whole thing!  Don't know why she doesn't sleep like that at home!  When we weren't racing, I was carrying Ethan on my back with Kay strapped to my front. Hmm...wonder why they haven't invented the double sided carrier?  Talk about a work out!!  Carrying fifty extra pounds of weight on your front and back while walking up hill.  My mom was having a hard time pushing the empty stroller up that hill.  I'm sure I will pay for it in the morning.

We had a great day and topped it off with Cheeburger Cheeburger for dinner.  I am stuffed!  I feel like I gained 10lbs just from dinner.  I had chicken instead of a burger, but I don't think that spared any calories.  Plus the french fries dipped in ranch didn't help.  My gut is crying for mercy already.  Hey, after that work out today, I deserved it.  I'll be good tomorrow.

Down and out...

It's been a rough week for Kaylee.  Her two bottom teeth are coming in, so she has been absolutely miserable.  Today, she went all day with out taking a nap, not even for five minutes, UGH!!!  She cried and cried and cried!  If she wasn't crying, she was on the boob juice or I was holding her.  If I even motioned to put her down, she cried and half the time, if I tried to even sit while I was holding her she cried!  She finally went down a couple of hours ago, but she has woken up twice.  

For a while there, I felt like we were on ACTH all over again, only worse because today's cries were actual "pain cries", not "I'm grumpy cries".  Isn't it funny how a mother always knows her baby's cries?  I resorted to driving the kids around in the car to try to get her to sleep.  With gas prices these days and my SUV, those teeth better come in soon!!  She did manage to sleep for about 20 minutes after we drove around for nearly 20 minutes, so the break was short lived, but it was nice while it lasted.  I think I will try that trick that was in that movie Collateral, where Jamie Foxx kept a picture of an isle of paradise on the sun visor of his cab, so he could go on vacation when ever he wanted.  Here is my paradise:

Ahh...welcome back!

Here is a dose of my reality, the dreaded playroom off the living room (heh, see my exercise machine, still in the box.  Those credit card rewards sure went to good use:)




On top of all that, the boys were not getting along.  Ethan was having a "bossy, no share day" and Javi was having another "I don't want to do my math homework" nights.  It took us an hour and 45 minutes to get through one worksheet with about 15 problems.  There was Kaylee on the boob, while I was explaining carrying the number to the ten's column to Javi for what seems like the millionth time.  We did get through it, but not in time to use his "Wii bucks" to play Wii before his dad arrived to pick him up, so that was another freak out.  When Javi is hell bent on playing Wii, it is like trying to talk down a jumper.  I think I missed my calling, with all my experience with defusing tantrums, I could be in hostage crisis management. We were doing breathing exercises, counting to ten and breathing with each number, which usually the first few numbers are more of projectile saliva (sorry to be gross), than breathing.  Countless reminding of "making good choices today, so we can play tomorrow".  We have been trying to use more natural consequences for those types of situations to control "behaviors" rather than time-outs.  Time outs are currently not recommended by ABA, but we still use them for certain situations. Anyway, just one of those days in the G-funk family. Fortunately, it's not like that every day. Speak of the little devilette, she is up and crying again!

FDA ACCEPTS REVIEW FOR VIGABATRIN'S USE FOR INFANTILE SPASMS AND COMPLEX PARTIAL SEIZURES

The Tuberous Sclerosis Alliance is pleased to announce that the U.S. Food and Drug Administration (FDA) has accepted two new drug applications from Ovation Pharmaceuticals, Inc. for Sabril® (vigabatrin) addressing two types of epilepsy, including infantile spasms. This is exciting news for the TSC community because this is the first step toward review and hopefully approval of vigabatrin for use in the U.S.A. Vigabatrin is currently marketed in more than 50 countries worldwide.

The Tuberous Sclerosis Alliance is advocating for an expedited review of the application, but we anticipate the process will take six to nine months. We will keep you informed as we find out more over the coming weeks.

Infantile spasms are a somewhat rare, but catastrophic, form of epilepsy, which almost always start before one year of age. They are one of many symptoms that arise from TSC and about 50 percent of children with tuberous sclerosis complex experience infantile spasms. Currently, there is only one off-label treatment for infantile spasms. Sabril (vigabatrin) would be the first FDA approved treatment. “Effective treatment options in the United States for infantile spasms are rare,” said Kari Luther Carlson, CEO of the TS Alliance, “and this is a positive step for our community.”

For complete information, read the news release from OVATION here.

How we manage "Things"

My husband recently got me more turned on to Things.  No, I'm not talking anything kinky, for those of you with your minds in the gutter!  He had jumped on the GTD bandwagon after reading, or should I say listening to the book Getting Things Done by David Allen. Since then, he has tried and tried to get me more organized and in to using some sort of GTD application, which at first I was very resistant to. The idea is, if you have a master list of everything that you need to get done, categorized, written down and out of your head, your time will be better managed and your stress level will decrease because you will no longer need to think of things multiple times. Once you have it down, you only worry about it again when it comes time to complete it and you never worry about forgetting things you really needed to get done.

Well, life has been pretty tough to keep straight in my head lately. I have multiple projects going on, combined with all the day to day, kids, school, homework.  Not to mention all the extras of an SN child, therapy schedules, doctor's appointments, IEP's. As well as, keeping up with housework, and keeping up with my need to be social, emails, blogging, and phone calls. My wonderful hubby decided to get me an iPhone when Kaylee was in the hospital the last time, so we could not only keep up communication through SMS (text messages), but also so I could have email and internet where ever I was so I could still do my googling on medications, therapies, etc. from the hospital. It has been a god send. It has done so much more than I had originally thought I could do with it. I use it for absolutely everything! It's my calendar, alarm clock, phone book, iPod, phone, cookbook, note pad, GPS, photo album, medication alarm, kid entertainer, TV, audio book library, and the list goes on. There was actually a really funny parody about it that was featured on Conan that the iPhone does everything, shaver, cheese grater, etc (sorry they took it off You Tube). It is totally true though. Well, after all that the iPhone does for me, I figured I would give this GTD a try.

There are many GTD applications available for Mac and PC users. Currently we are using Things for the Mac (sorry windows users). Here is a sample tags list that my husband uses to manage everything:

There are so many ways to organize your to do items. For example, if one of my projects were to "bake cookies", I could pull up a new project to break things down. Not only would "bake cookies" be a to do item, but if I needed to "buy eggs" I could tag that "grocery store" that would also be tagged under "errands" which I would only pull up when I am getting ready to go out in the car. I would also have things like "deposit checks" tagged "errands", so I would only pull up items that need to be done outside the house when I am running errands. It may sound like a waste of time to put these mundane tasks in a to do list, but how many times have we gone to the store and forgotten an item and had to go back for it? The few seconds it takes to organize these tasks is far less time than it would take to go back to the store with three rambunctious children.

Ultimately, you have to use a system that works best for you, but this is just the way we found that works for us. Hey, if it keeps stress levels down, it's worth a shot!