I am working on putting together brief overviews about the different Fragile X Associated Disorders - and this is the second (behind the Fragile X Syndrome page I have up). You can find this post as well under the tab at the top labeled FXPOI. Much of this is simplified to make it easier to understand, and while I got my information from Fragile X websites - it should not be taken as medical advice.
Fragile X Associated Primary Ovarian Insufficiency, or FXPOI is a condition in which the ovaries stop functioning...
Friday, July 29, 2011
Wednesday, July 27, 2011
Research Wednesday
Back to our normal grind here with some more promising new medication to help out FXS kiddos (and adults). This one is a little different than our clinical trial drugs though as the medication I am covering today is already FDA approved!
Many of you may have heard of minocycline, a drug used to treat bacterial infections including acne. If you haven't heard of minocycline, you most likely will have heard of tetracycline (though maybe not by name). Tetracycline was used for a while as a "safe" antibiotic for pregnant...
Tuesday, July 26, 2011
Staying At Home
One of my biggest pet peeves is when someone says to me (or Mr Awesome) "You are SO LUCKY to be able to stay home with your kids". Usually I just smile and nod, but it really gets to me.
See, luck has nothing to do with me staying home with the boys. It was a conscience decision made my Mr Awesome and I when I was pregnant with Ayden. We worked out the numbers of daycare versus me staying home and decided we could do it. At the time the decision was made, we essentially cut our income in...
Monday, July 25, 2011
Our Happy Ending
When I was pregnant with Ayden, like so many other mothers I joined Baby Center and found my way to the July 2007 Birth Club. (For those of you keeping track, that would have been in November 2006.) After the birth of our babies in 2007, a good amount of those moms moved on never to be heard from again. But there was a group of about 15 of us that found a new home and continued to talk and share as well as get support...
Friday, July 22, 2011
Fragile X Awareness Day 2011
Today is Fragile X Awareness Day 2011! I hope that you have taken the time to read my posts over the past few weeks about Fragile X. If not, you should do it now. (hint hint)
I have a couple more things to add for those of you related to me on my father's side. (The Masters')
It is in our family.
There are 6 boys and 1 girl with the full mutation not to mention at least 11 carriers spread through 5 generations; though...
Thursday, July 21, 2011
Mission: iPossible
National Fragile X Awareness Day is Friday, July 22, 2011. Please take a few moments to share Fragile X with someone who may not be aware.
In what will be one of my last posts referring to the iPad drama of the past few weeks, I want to tell everyone a little bit about what has been dubbed Mission: iPossible.
At the bottom of the iPad Giveaway post, I made a short comment referring to MiP:
There are other things in motion that hopefully can make this, tragedy, not so terrible. I'm going to be honest though...
Wednesday, July 20, 2011
Another iPad Update
My blog literally exploded this week...literally.
In what one website is calling iPadgate...my blog was linked up and I have had an influx of questions that I want to answer now that I'm a little more...settled....from the anger and hurt.
I came across Marissa's Bunny while looking through some Fragile X blogs just after Ayden's diagnosis. One website mentioned them, and I ended up spending a few hours reading through the blog and about Marissa. I saw the original post about the iPad giveaway, and...
Are You Aware?
National Fragile X Awareness Day is Friday, July 22, 2011. Please take a few moments to share Fragile X with someone who may not be aware.
Are you aware?
Unfortunately, the answer for so many is NO. Today, I want to share with you some things that have been said to FX parents from family, friends, random people, and even some doctors.
Please note: I've edited a few of the comments to keep some anonymity.
My ex-husband (when my son was diagnosed) "Of course it came from her side"
I was a Nazi Concentration...
Tuesday, July 19, 2011
PECS Update
As you know, we have been working with Ayden on implementing PECS this summer. We successfully transitioned him to Phase III a few weeks ago and it is going fantastic.
Phase III is all about learning to associate a card with a specific object. By the end of Phase III, he should be able to identify and successfully use around 20-25 cards. We have around 20 cards setup in his book for him that he knows and uses. In addition, we have multiple cards in a pocket in his book we haven't introduced yet.
I would say Ayden is...
Monday, July 18, 2011
4th Birthday Pictures
Our first year sans birthday party for Ayden, but we had a fun day nonetheless. Our morning was spent in a doctor's office (more on that another time, but nothing to worry about!) then filled with playing in the pool, a trip to the fish store to get Ayden the final part of his birthday gift, dinner out at Pizza Hut, and finally blueberry pie at home. He only had one present to open since we didn't wrap his fish tank, but his Angry Bird...
Sunday, July 17, 2011
First and Last Day of School 2010/2011
I just cleaned off my point and shoot camera, and ran across the pictures I took of Ayden the last day of school. I tried to get the same pose as the first day of school. Even the pictures show how much he grew over the year, I still am very proud of him. ((Notice that his backpack is not on in the first picture...he absolutely refused to wear it and broke down in tears when we attempted, so it was carried. By the...
Tuesday, July 12, 2011
iPad Giveaway - Update
To read more about this developing situation, please read my update here as well.
Very soon after Ayden was diagnosed with Fragile X, I ran across a website via another FXS parent that was hosting a merit-based special needs iPad giveaway. I don't often enter giveaways online, but this one was something that could help Ayden so much. I decided to enter him in the contest. To enter, one either had to comment on the post at this website or email your entry. I chose to email our entry, basically detailing...
Monday, July 11, 2011
The Things No One Tells You
Please take a few minutes to read my previous post about Fragile X and comment to enter the giveaway. I will be randomly choosing a winner on July 22, 2011 - National Fragile X Awareness Day!
I often sit back and wonder what I would have said if someone told me what my life would be like with Ayden. How the person I was then would have reacted to the news the my 4-year-old son barely said five words. Or that I would be sending my three-year-old son on a bus to school, praying that he would be okay. ...
Friday, July 8, 2011
Do you know about FXS?
Having a child with FXS, it's painfully eye-opening how many people just have not even heard of Fragile X, let alone know anything about it. Fragile X Awareness Day is this month, so I decided I'd be doing a few posts to educate those that may not know anything about it. I'll start with just a few simple facts today, but I want to challenge each person that reads this to share the link with at least one other person who has not heard of Fragile X and to comment below when you do. ((Make sure you read...
Wednesday, July 6, 2011
Happy 4th Birthday, Ayden!
Today, my little guy is four years old. It seems like just yesterday that we were waiting on his arrival, unaware of just how much our life would change with a single glance. Despite all Ayden's differences; he is still one of the happiest children I have ever met. He lights up a room when he walks in, and steals your heart with his shy little smile.
1 Day Old1 Year Old2 Years Old3 Years O...
Friday, July 1, 2011
Marissa's Bunny iPad Giveaway
I have had a lot of traffic the past couple days in regards to the iPad giveaway sponsored by Marissa's Bunny. I will be posting the story in it's entirety here when I am more aware of what is happening, but at this time the relevant information is we have not yet received our iPad for Ayden and have not yet been given a date as to when it will be shipped.
Update 7/11/11: I was informed by email a few hours ago that the iPads promised the 40 families in this giveaway are not there. I am quite literally sickened...