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Sunday, January 31, 2010

I had to steal this~

And I dont even know who to give credit to!
I saw this on a message board on babycenter, a mom posted it after seeing it on a friends blog. Had to share!

If you only knew...

Lady in the waiting room,

If only you knew, what a miracle she is.
You would not be asking me why she can't tell you how old she is.

If only you knew, I have 5 children.
You would not be sharing with me...how easily you potty trained your two year old, giving me advice.
If only you knew, she is defying the odds.
You would not be wondering why you can't understand what she is saying.

If only you knew, how many times she has been poked and cut on.
You would not be explaining to me how to wean her from her paci, she's way too old to have one.

Most days...I would explain it all to you.
I would say, she is missing an important part of a chromosome. I would share that she has heart disease and has endured more pain and fear in her short three and a half years...than we will probably ever experience. I would defend her speech, the paci, and her awkward gait.Today is not most days.
I just don't feel like sharing that much of her with you today.Sorry.

So instead...you can walk away...thinking that I am a mom with few tools.
It's ok...today.

What's sad is...I was once you. I sat with my healthy, age appropriate child and gasped at the child who was way too big to have a pacifier and still wearing a diaper. I too would have thought..."well of course I can't understand her, take the paci!" I was oblivious to processing disorders. I had no knowledge of heart disease in children, congenital anomalies, diaphragmatic hernias, the importance of perfectly formed chromosomes and I thought all developmental delays were environmental.

Ignorance is NOT bliss. We could have educated you. I'm sorry...

Wednesday, January 27, 2010

this is what is good about a sick day


Avery spent monday and tuesday at home sick. not a big deal-just that low fever plus cough plus unbelievable amounts of snot thing thats been going around! Well, on tuesday in between nose wipes, Avery produced this masterpiece. It went right up on to the fridge and because mommy was so proud, I put todays date on it instead of yesterdays. oops. But, this is one serious drawing for a kid who a. has little interest in this activity and b. can barely hold the marker. So mommy was pretty psyched to say the least!

Tuesday, January 26, 2010

WOWGREEN!

wowgreen International, LLC is the provider of safe, green household cleaners that
are sold and distributed to consumers through a channel of independent distributors.
The company’s mission is to free the world of toxic chemicals, one household at
a time. wowgreen’s products are manufactured from a proprietary blend of enzymes
that provide a safe, effective and all natural cleaning solution for every household
need. To fulfill the company’s “green promise,” products are packaged in reusable
containers and shipped in recyclable paper containers. By working together, we can
make the world a safer, cleaner place to live.

My older and much wiser brother just became an independent distributor of these products. I have used them myself and I must say they are pretty cool. Best part is knowing they are non-toxic and safe around my kids. Check out his blog and then check out the products! http://wowgreendave.blogspot.com/

Monday, January 25, 2010

BUTTERS!


Nolan hasnt gotten much love here lately....so here is cute pic from bath time a few nights ago. He was being really cute and sharing toys with Avery and giving her hugs. Here he is saying CHEESE!!!!

Saturday, January 23, 2010

Avery saying Fan (FAH)

video

Avery has always said FFFFFF for Fan. Today she started saying FAH! now all we need is the N on the end! Go Avery!

Thursday, January 21, 2010

Appropriate play!

this was taken on jan 3rd. Avery is kind of obsessed with the dustbuster vacuum (guhguh). So i found a toy upright that has a dustbuster too! Here is some video of her using it correctly which means she is kind of doing imaginative play! YAY Avery! video

Wednesday, January 20, 2010

Pediatric Neurology, NEW and IMPROVED!

Wow, what a difference. This guy was great. And we had high expectations! He gave us so much information that I dont think I can clearly explain it here but at least he gave us information! At our last visit with Dr. Victim, she basically just shrugged her shoulders as if to say: "she has Rett syndrome, sorry, deal with it" and gave us no direction!
Today, we feel armed with info and with somewhat of a plan. Here is what we are going to do:
1. EKG
2. Xray of spine to get a baseline if she should develop any spinal curvature
3. overnight video eeg (Fun!)
4. Consider giving Avery a stimulant to calm her down-she NEVER stops moving, her attention span is non-existent and she is impulsive. Because you can see effects of stimulants in about a week we may think about trying it. I am thinking along the lines of learning and maybe it will help her to focus and learn more at school?
5. Clonidine? for sleeping. The Dr. did say he thought what we described sounded like a typical sleep distrubance based on sleep cycles. And, it doesnt really bother me...plus Clonidine sounds so scary for some reason? This is last on our list.
6. Folate-Apparently there have been clinically diagnosed girls that really had a folate deficiency and when given this supplement, they improved. NOT in girls with a MECP2 mutation or deletion. But, he said since Avery's is yet to be reported it couldnt hurt. (When I got home though I found that the research has shown it doesnt really work and may increase seizures so I have an email into Dr. New and Improved. will update on that when I hear back!)
He recommended that we definitely go to the Rett syndrome conference! Great news! Now to figure out how to pay for it all! yikes. But its in Colorado and would be super informative. So we will figure it out. He also recommended going to the Blue Bird Rett clinic in Texas! Maybe....
Anyway-he was great.
Ill keep you posted on what happens next!

Saturday, January 16, 2010

DENIED!

Well that was fast. Fastest thing Kaiser has ever done. We got the denial letter today for the Rett clinic because "it is a pediatric neurology visit and we are already seeing a ped. neuro." Ummm, do your research Kaiser, it is not just a ped neuro visit at all. Boy are they going to hear from me. Im disputing this till the cows come home!

Friday, January 15, 2010

A Mother's Mission

Ingrid Harding, founder and president of Girl Power to Cure, and her daughter Sarah are featured in this awesome video from Parents TV. Watch it and share it!

small success

I love our pediatrician. First off let me say that we are Kaiser people. We are Kaiser people because this was the lowest cost option to me when I got my first real job out here in Ca in September of 2001. So, even when I left that job after I had Avery, we stayed with Kaiser because, well, they suck you in and they are somewhat cheap. Everything is all connected. My primary can go in to the computer and see all my visits with all my Dr's (I dont have THAT many I swear). If I need a prescription, I pick it up in one building over from my appt THAT day (an I do need several!). I can email my Dr's-actually any Dr. that I have ever seen or has ever seen my children. Its all so connected that I feel if we ever left I would be lost at sea-I dont know how to do real insurance!

anyway...Kaiser is a ginormous HMO. Which means that is pretty easy-when there is nothing wrong. the moment something comes up thats off the normal path and the hoops get lined up for you to jump through one by one very slowly. And it becomes a pain in the ass.

Well a problem did come up, as you know. Avery got diagnosed with Rett syndrome. So we need some more help. That help comes in the form of Katie's Clinic for Rett syndrome at Children's Hospital in Oakland (20 minutes away!) This is the same clinic that our old neurologist failed to mention to us when I specifically asked if there were any specialists in the area! oops.

So I call the new neuro's office and ask if they will give me a referral to the clinic. Nope, not until the new Dr sees Avery and even then it isnt "needed". So I ask my ped and she says "wait to see Dr. M (new neuro) first. Let him tell you what Kaiser has to offer and then see if you still want the referral". Umm, hmmm. Let's see. Avery has Rett syndrome. The clinic at CHO has super sonic specialists that KNOW Rett syndrome. Not needed? I beg to differ. I mean the flu shot isn;t really NEEDED is it, but guess who wants you to rush in a getit? KAISER! So I get into an email exchange with my ped. She tells me she never said it wasnt needed and that if after we see Dr. M, and he doesnt refer, she will! So I let her know that regardless of what Kaiser offers Im still going to want to go to the clinic and oh by the way we have an appt on the 12th of Feb! She calls me and leaves me a message saying she put the referral in!

Thats the first hoop. Now we wait to see if the powers that be approve this referral. It's $1500 bucks. Not a lot to a gigantic HMO that, by the way gets about 8-10K out of just our family yearly. And it will be so helpful for us! We have lots of questions! This is our baby!

So, like I said, I love our pediatrician. She made it happen.
I'll keep you posted on hoop #2.

Monday, January 11, 2010

progress!


So, Avery has had three PT's over the last 28 months and here is the fruit of their labor! Thank you Debbie, Lesah and Danny!

Tuesday, January 5, 2010

Another Gym Gem

I have a few times before commented on the ladies who share the locker room at our gym and their "towel style". Yesterday was a new low. As Im blow drying my hair (just in case you might have thought I was drying other body parts as some ladies do in my locker room) I look over to see a woman coming from the shower with one towel. WRAPPED AROUND HER HEAD! you know-bend over, towel on head, twist, stand up. Walked all the way to her locker that way-with just the towel on her head and all her bits just splayed out for everyone to see. YIKES.

*not the actual woman, if it was, she would not be wearing a robe!

YAY! 2000 hits!

Thank you to all of you who read my little blog! It is so therapeutic for me to write it! And I now have had 2000 unique hits! :) THANK YOU!!!
xxoo

Friendly reminder about the words we choose



It seems to be thrown around a lot these days. Retarded. Retard. I cringe each and every time I hear it used. Sometimes I say something, sometimes I dont. But after hearing this speech by a high school boy who has a sister with an intellectual disability, Im fired up and Ill let you know if you say it within earshot of me!