Looking forward to Spring

We have had a bit of warm weather in San Diego.  It actually was warm enough to go for a swim in our community pool.  We dusted off the boys trunks and took a dip a couple days this week.  It was lovely outside.  We were able to bask in the sun and anticipate the coming of spring, after what seemed to be the longest winter of our lives.  That peek-a-boo of spring, was hopefully symbolic of what is to come this year.  It's a time for optimism and renewal.  After the devastating blow at the end of last year, finding out that not only did Kaylee have IS and TSC, after already having been diagnosed with epilepsy, but also finding out in the same month that Ethan has PDD-NOS. Needless to say, it would be a devastating, blow to any family to find out that all your children have special needs.  Only now do I understand this quote from Shakespeare:

Now is the winter of our discontent
Made glorious summer by this son (sun) of York;
And all the clouds that low'r'd upon our house
In the deep bosom of the ocean buried.

Or put more simply (my interpretation),  we will all go through a cold and hard winter at some point in our lives, but we will always have the spring.   The cold sometimes seems like it will last forever, but it doesn't.  It seems like the sun will never shine again, but it rises every day.  With each new day that dawns, I have renewed hope that our children will thrive and live happy healthy lives.  Each smile, each kiss, each hug, each milestone reached is like a little miracle that brings us closer and closer to the spring.

Combo Vaccine Linked To Kids' Convulsions

My friend emailed me this post this morning:

ProQuad Protects Against Measles, Mumps, Rubella, Chickenpox

POSTED: 6:02 am PST February 28, 2008

ATLANTA -- A new study finds children suffered higher rates of fever-related convulsions when they got a Merck combination vaccine instead of two separate shots.
The results prompted a federal advisory panel to back away from its preference for the combo vaccine ProQuad, which protects against measles, mumps and rubella as well as chickenpox.
In the study of children ages 12 months through 23 months, the rate of seizures was twice as high in toddlers who got ProQuad, compared with those who got one shot for chickenpox and one for the three other diseases.
The lead researcher of the federally funded study said the risk translates to about one extra case of convulsion for every 2,000 doses of the combo vaccine.
The study focused on children who develop fevers and then go into convulsions. It's an occurrence that frightens parents but usually has no lingering consequences. There were no deaths in the new study.

Larry King, Autism Special

Did anyone happen to catch the piece on Larry King about Autism?  It was a great piece.  They featured: J-Mac, Holly Robinson-Peete, Doug Flutie, and Toni Braxton.  They also had an appearance by a doctor with a son with Autism, who specializes in patients with Autism.  You can find more info about this show at the following link:

Larry King, Autism: Solving the Puzzle

It was a great show.  Definitely still a lot  of debate in the media whether or not vaccinations cause Autism.  I am with J-Mac's mom.  While I am not devaluing the need for finding a cause, let's stop spending so much time debating about where it came from and do something about helping those who are affected.  We can start by beginning to change people's view about people with Autism.  Many are very capable individuals, even those who are considered more "severe". Trying to put these kids in a box and labeling them Autistic, can seriously devastate families and individuals affected by Autism.  My sons will never be "normal", but the more accepted they are in more typical activities, they may have the opportunity to unlock hidden potential. My sons are very functional and do have a good chance for independence, but they do need special help in certain areas.  We are fortunate to live in a community where we have lots of support with services, school, and special activities.  Not everyone is so fortunate.  It is my hope that some day there will be more opportunities for individuals affected by Autism everywhere.

Kay's First Cold

My little Kay came down with her first cold.  With all the illness going through the house it was inevitable.  Unfortunately, now it's taken down my husband, so I am the last one standing as usual!

Kay sounds awful when she coughs.  Poor thing!  To add insult to injury, she is teething, and they look like they are going to break the surface any day now.  She has been my little mommy's girl lately, well, more so than usual. I'm starting to look like Popeye with all the baby lifting and carrying lately.

Big Day at the Train Park

We had such a great time at the train park with weekend.  We had breakfast at the train park and then we rode on the choo choo. Hamburger Factory is in the middle of the park and the depot is right out side the restaurant.  

This weekend's train was the trolley.  They change trains every weekend, so every time we go there is a different train.  It keeps it fun for the kids.  It's a beautiful park.  We are so fortunate to live so close to it.  We have a annual membership to ride the trains, so it's $30 for the whole year.  We go there about twice a month, so it definitely makes for an inexpensive family activity and well worth the annual membership.

Well check for Kay and Ethan

Kaylee had her very first immunizations at her well check today.  She had the DTaP, Hib and Pneumo.  These are normally scheduled for the three month appointment, but with the ACTH and the unknown neurological repercussions, we had to postpone them.  She seems to be doing pretty well so far.  She had some Tylenol to help with the sore legs.  She did so well for the actual injections since she is so accustomed to being treated like a human pin cushion.  Poor thing!  

We hadn't actually planned on getting her immunizations started today, with all the illness in our house right now.  I figured with all the recent outbreaks of previously controlled diseases in our area, it has been a concern that she could contract something and get an out of control fever and have a febrile seizure.  I have done enough research on the autism/immunization stuff lately to feel comfortable with moving forward with the vaccinations.

Ethan also had his well check today.  He is doing great, other than the still lingering cold.  He was so great about the doctor using the "flashlight" to look in his ears and down his throat.  He also likes the "circle" the doctor uses to listen to his heart and lungs.  

They are both the about the same in terms of length and weight.  Both are in the 30th percentile for weight and the 50th percentile for height.  I think most of Kaylee's 15.9lbs, is in her still chunky cheeks!

We are in the works for a referral to see a geneticist to test myself, Javi and Ethan for Tuberous Sclerosis.  An interesting fact about our pediatrician, in his more than thirty years as a pediatrician, he has only seen one other family affected by Tuberous Sclerosis.  Pretty crazy!  That tells you just how rare this disorder is.

Sick of Sick

We have had a slew of illnesses flying through our house in the last two weeks.  Poor little Ethan had a triple whammy this week, pink eye, ear infection and chest cold.  Ah, the joys of the first few months of preschool!  We went through it with Javi for what seemed like a year.  Javi brings home every bacteria and virus west of the Mississipi to this day.  When will it ever end!!  I feel like our house is a petrie dish being grown for some kind of gross experiment.  

Fortunately, by the grace of god and a benevolent school teacher (who obviously got tired being sick) invented Airborne.  I have been drinking this epervesant  miracle by the gallon on a daily basis for the last five days.  I am hoping that I will not OD.

Tomorrow we go for Ethan's well check, but he is by no means well.  The pink eye has cleared in one eye, but moved on to the next eye.  The chest cold is sounding much worse and we have to add upset stomach to that list as well.  Ethan has had the big D in his BM's.  Yuk!!  Because of the big D, he is now suffering with a nasty case of diaper rash.  This poor kid is just getting smacked down six ways from Sunday, but he still greets me with his cute little "Hi Mommy" every morning in his little froggy voice.  Too cute!!

Neuro Appointment

Kay had her neuro follow up yesterday.  Pretty good news all around.  We increased our dosage of Topamax a little to try to counteract the spasms she has been having lately.  We are hoping the new dose will eliminate any of the break through spasms she was having which is was only one cluster of 3-4 spasms like every few days for the last few weeks and one cluster of twenty a couple of days ago, which is a dramatic reduction from before the Topamax days.  We are going to give it about three weeks on the new dose before moving to the big guns, Vigabatrin.

The best news of all, is that he has "high hopes" for Kay's development.  He said he has every reason to believe that she will be developmentally normal, which is big news in our family.  We do still have a small gap to fill with her development because of the ACTH, but she gains new skills almost everyday.  Yesterday she even managed a four syllable AH-GOO-BA-GA.  I guess she told us!  She had a lot to say, but to anyone who knows, Kay, that is no surprise.  She is always putting her two sense in.  

We are going to delay her repeat EEG for at least a couple months to see where she is at and whether or not she is going to need Vigabatrin.  It's scary to think that she may be crawling by the time we have our next EEG!  Good luck trying to keep her down.

Tomorrow we go for our well check with the pedi doc, although we already know that Kay is down to a svelte 16.4 lbs, compared to her previous weight check with Dr. Neuro at a whoppin' 17.8 lbs just three months ago, just before she finished the ACTH.  She is still our little chunky cheeks though!

Switching up the blog

It has become to cumbersome to keep up with three different blogs, so I will now be connecting all the blogs for each of the kid's websites to this one.  I think the info would be pretty redundant if I kept one for each child anyway.  We are now switching to a blogspot account so I can blog anywhere, although the new blog will look totally seamless from the old one.  I can post from my iPhone, so it will make it much easier to keep up.  I have archived all of Javi's original posts, so they will also be included.  I haven't really blogged for Kaylee's site, so that will be easy!

Washington Break

It's been a while, I know. It's been a busy week and ramping up to be an even busier week next week. The kids will be on break, so yes, that means all of them will be here at the same time. Ahhhh! It definitely won't be a break for mom. We do have a few things going on next week. A couple doctor's appointments, a visit to Grandma's, and Javi's Aitona will be in the hospital. We are hoping for a super speedy recovery for Big Javier. We will definitely make some time to do something fun as well. Maybe we will head to the Zoo or Wild Animal one of the days.

Javi had a special date with a special Valentine this year. Brianne and family took Javi out for a Valentine dinner, since Aita was out of town this week. What a lucky lady to have such a handsome Valentine! We are moulding Javi to be a real ladies man. He had a card and a box of chocolates for his date. I am sure he was a perfect gentleman, with only the occasional burp, and mention of pee or poo, which has been Javi's favorite topic of discussion. We have tried to counter this by simply telling him that poop talk belongs in the bathroom (a tip I learned from an old pro) and he gets sent to the bathroom until he gets it out of his system. I only wish he went half as much as he talks about it!

Thank you!

Thank you for visiting my website powerjavi. I have been answering email with mom every afternoon. I love to get email. I hope that everyone will keep sending me email. Be sure you ask an adult to visit www.powerjavi.com. Thank you very much.

Love,
powerjavi

Parent Education Night for Children on the ASD Scale

Tonight we attended parent education night. It was interesting to hear the other parent's stories and what they have tried to counteract difficult behaviors. The information presented was interesting, however, I think the lecture was a little hard to follow. Sometimes people that are experts in a particular field, forget that the lay person has a hard time understanding all the jargon. When you are relatively new to the diagnosis, you just want to know how to help you child with out having to learn a new language. Although hearing about artificial consequences and differential reinforcement is interesting. Listing it in a flow chart to keep us newbies on topic, would probably not help. Learning all those terms is an afterthought when your child can't make it through a grocery store run with out throwing themselves on the floor and screaming.

Fortunately, that is not the case for our family these days. Javi has really made a lot of progress over the past few years after using many of the techniques suggested by ABA. However, I must stress that you have to find what works for your child. ASD children cannot be put in to a box and categorized. What works for one child, will not necessarily work for another. The best advice I can offer that is more a "real world", realistic technique that can be applied to nearly every avenue of your life:

Recipe for Success for your ASD Child
-----------------------------------------------------
ADD:
time
a heaping cup of patience
a generous portion of love and understanding
a tablespoon of the professional techniques

Blend until you get the right consistency.

ASD Service Dog

I (mom) have been researching the possibility of getting a service dog for Javi. There is quite a lot involved in getting a service dog, however, I think it would be a good fit for Javi. It would help in so many ways to allow Javi to be much more independent. We have put our pre-application in at Paws'itve Teams (http://www.pawsteams.org/) which is right here in San Diego and I have researched some that are out of state. In particular, we are interested in the service dogs that are more "family oriented" since we have multiple children with special needs. I have read on North Star's website (http://www.northstardogs.com/), that they offer dogs that meet the family's needs. In particular, there is a story about two brothers in the autism spectrum that share a service dog. The dog would mainly help with Javi's independence (ie: help him stay out of the street when playing outside with typical peers, help him stay on task when dressing, etc). I can't believe the stories about these dogs. They are amazing! I think it would really help him bridge the gap in many and help him with his day to day tasks. Also, the true companionship of have a service dog would be wonderful for him.

It's a long wait for a dog, but it's definitely something we are looking in to as a possibility.

My brother's first day of school

Today, I helped my little brother get ready for his first day of school. I helped him brush his teeth, put on his back pack and get in the car. Ethan was pretty excited about his first day. He cried when Mom and I left, but I think he will get used to going to school in a couple weeks. I was pretty nervous to go to school for the first time too, but now that I am big, I love it. Ethan's new teacher is very nice. Ethan has a visual schedule just like the one I had when I first started preschool. Now that I am in second grade, I don't need a picture schedule. I can just read the times and activities I have planned for the day. Mom dropped me off at school after we took Ethan, so we were a few minutes late for school. I don't like being late, so I kept telling Mom to drive fast so I wouldn't miss the morning announcements.

I can't wait to hear all about his first day when I get home from school today! I hope he made lots of new friends.

Superbowl Sunday

I bet my mom on the game today and won! My sister, Kaylee and I were cheering for the Giants and my mom and Mark were going for the Patriots. It was a really close game, but the Giants took it in the last few minutes. I won six wii bucks, which equals to 30 minutes of play time. My brother, Ethan slept through the entire game. I will probably use my wii bucks after school tomorrow.

We are taking my brother to his first day of preschool tomorrow. I am going to hang out with him for the first few minutes of class. I think he will have fun. He's getting big, but not as big as me.

Welcome to my site!

I hope you like my new site!