As I briefly mentioned here, we got Ayden a fish tank for his birthday this year. Ayden ADORES his fish. They get a good morning immediately when we go downstairs and he will sit and watch them and wave at them multiple times during the day. He blows them kisses at night even. I'm fairly certain those fish loved him just as much...one of them let him touch it and the other swam to the side of the tank when Ayden approached. It was a weird and special relationship, I've never seen fish act like...
Monday, August 29, 2011
Sunday, August 28, 2011
About a Video...
I had this video shared with me by a friend...and wanted to share it here as well. The video creator goes over some numbers, that I want to add Fragile X to as well.
Leukemia affects 1 in 1200. Funding: $227 Million
Muscular Dystrophy affects 1 in 100,000. Funding: $162 Million
Pediatric Aids affects 1 in 300. Funding: $394 Million
Juvenile Diabetes affects 1 in 500. Funding: $156 Million
Autism affects 1 in 100. Funding: $79 Million.
For 2010...the National Institute...
Thursday, August 25, 2011
iPad Update, 1 Month Later
I have been meaning to do an update on our iPad for a while now. As I was going to title this post, I did a quick check to see how long it's been and surprisingly it was exactly one month ago today that I posted our first update!
So, here we are one month in. Ayden's time is closely monitored on the iPad because he literally could playALL DAY without stopping. We usually do about an hour a day split into two sessions (morning and afternoon). He is required to play with other toys in order to get his time,...
Tuesday, August 23, 2011
4 Year Well-Baby Visit
We finally had Ayden's 4-Year well-baby (child?) visit this last week. To say it was traumatic (for me) would probably be quite an understatement. We had to reschedule this visit, which is why it is so late, and ended up having our appointment with the "new" doctor in our practice instead of our normal pediatrician. We used to have a nurse practitioner at our office as well as our normal pediatrician, but she left back in January and since then it has been difficult to get into the doctor. It's nice...
Monday, August 22, 2011
Annual Visit to Nana & Grandad's House
As I mentioned last week, we had a very good time visiting my parent's house with the boys a few weeks back. I know changing locations and not having Daddy around is always difficult on Ayden, but he really did very well. We had a couple of very exciting things that really may be a highlight for me when thinking about Ayden and his progress this summer.
First,we attended our hometown summer fest. To say this is sensory overload for Ayden may be a small understatement. Loud music, lots of people, high...
Friday, August 19, 2011
Decisions - A Guest Post
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Thursday, August 18, 2011
Other Fertility Options
This will be a short post, as there is just not much to say about these other options available to carriers. So far, I've gone over two other options - choosing to have children naturally and also PGD. Today, I want to go over the final three options.
First - there is the option of having a donor sperm/egg implanted. I think this is fairly self explanatory. You choose to have either one or both sperm and egg donated and then implanted and have a normal pregnancy without the risk of Fragile X. ...
Wednesday, August 17, 2011
PGD and Fragile X
As I mentioned before, I wanted to take the time to go over reproductive options for FXS carriers. I've already gone over one, and that is to "take your chances" so to speak as my husband and I have done. Another option (though fairly costly) is what is called Preimplantation Genetic Diagnosis or PGD for short.
PGD is performed in conjunction with IVF, but with the added step of analyzing the eggs or embryos for genetic abnormalities before implantation occurs. This can mean that no embryos with Fragile X...
Monday, August 15, 2011
Fear Not...
Took a week from posting while we were on vacation at my parent's house, but am definitely still around. We have a busy day today, but normal posts should resume in the next day or two! I'm so excited to continue with the pregnancy/fertility series and even more excited to share a special guest blog post very soon as well. I also have some exciting Ayden updates and pictures to share - so stay tune...
Thursday, August 4, 2011
Decisions Pt. 2
As I talked about in my last post, Mr Awesome and I decided early on in our marriage to conceive naturally and "take our chances" with the FX mutation. Ideally, I should have been tested before we started trying for Ayden. I know Mr Awesome urged me to quite often, but for whatever reasons I didn't.
When I was pregnant (still in the first trimester) we had me tested and went through genetic counseling. The genetic counseling was kind of a joke. We had a counselor who had never heard of Fragile...
Tuesday, August 2, 2011
Decisions Pt. 1
I mentioned back in this post that we had spent the morning of Ayden's birthday in the doctor's office, and promised more on that later. Well, today is later and it seems like a perfect day to share. (especially after yesterday's post!)
Some of you that have been reading a while may remember that I have known I was a FX Carrier since I was in high school. My dad was tested and found to be a carrier which makes me and my two...
Monday, August 1, 2011
Behavior Modification
I try not to do a lot of posts when I am frustrated, since I strive to keep this about not about how I'm feeling day to day but about Ayden and Fragile X; however, I can't deny that those two things bring many frustrations for me (especially together). I'd been thinking about my next post here knowing I needed to update how Ayden was doing, and it just wasn't what I wanted.
I look back at the past month and see us with the same disciplinary issues we had a month ago, even two months ago. We're doing all the right...