Thursday, January 31, 2013

Brief Updates

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An update on the kids, STX 209, Fragile X Advocacy Day, and Fragile X Awareness Day.  Lots of short blurbs to close out the first month of 2013!

We have quite a crazy month approaching as we head into February.  I'm not sure how much time I'll have to update here - but certainly feel free to follow along on Facebook, Twitter, and Instagram.  I wanted to post a few small updates about a few things before we got into the craziness....

Ayden:  We are now in the STX 209 open label extension.  We have another trip to Chicago in February, then one in April, and then we will be on every three month visits.  We've upped his dosage one time since we started so he is currently on 10mg (5mg two times per day).  We are seeing many good changes on this dosage and opted to stick this dosage out for now to see how Ayden is doing.  The change happened very quickly when we upped his dosage (within a couple days) and we are still seeing improvements after a week on this dose.  We will have to decide whether to try to up his dosage and try to get a little better result, but want to leave him on this current dose until we stop seeing improvements.   We are still assuming (even moreso now) that he was on a high dosage in the blind portion of the trial, the top dose he could have had was 10mg three times per day.  If we go up from where we are at, the next step is 10mg twice per day.  Lots to consider, but for now we're just watching.   In related news, Ayden made his very first two-word [spoken] sentence yesterday.  I'm just amazed at the difference this is making for him.

Issac:  The one who normally gets left off the really turning into a boy rather quickly.  He's developed quite an attitude recently doing the full body sigh when we tell him something he doesn't want to hear and bursting into full-fledged tears when he doesn't get his own way.  He's also picked up asking "why" to everything in addition to "what".  Of course those are the things that make me want to pull my hair out, but he also has the best sense of humor and a giggle that can't help but make you smile.  His favorite thing to do lately is play video games - Mario, Sonic, and Skylanders.

Emma:  Baby girl's first birthday is about a week.  I'm not quite sure how it came so quickly...but wow!  We'll have her birthday, then her party, and near the end of the month head to South Carolina for a research study then to North Carolina for the second part of another research study.  I'm very excited to work with both teams at USC and UNC again, not so much looking forward to traveling/flying/driving by myself but it will work out. In case you're tallying at this point, all these trips also mean I'll be physically in five different states in over the course of a week period and more if you count flying over them.  YIKES.

The other thing I want to touch on briefly is Fragile X Advocacy Day.  Advocacy Day is sponsored by the National Fragile X Foundation.  It is basically a really big group of parents, grandparents, siblings, and self-advocates that go to Washington DC to advocate for Fragile X funding and other things related to Fragile X.  This is the first time I have really wanted and felt I needed to do something even close to this, but probably will not be able to attend.  Financially, the cheapest we could do it would run between $600-$800.  That number includes flight, hotel, food, and something to wear (stay at home mom clothes just don't cut it when you're meeting senators!).  I've been watching flights since October of last year and trying to decrease that cost but it just isn't happening.   There are a few scholarships available that I'm waiting to hear back on, but I expect at this point it isn't going to work.  I don't talk about money on this blog a lot, I feel it's very personal to each family.. I'm going to make a small exception now though.  We are very thrifty with how we live to make it possible for me to stay home with our kids.  We cut corners, make sacrifices, do whatever we can and it is totally worth it.  It also means that we cannot pull an amount that high out of our pocket.  Especially after cutting into our budget for all the trips to Chicago we've been making for Ayden.  I'm very grateful that we are able to make it work, at times like this though it is so hard!   Whatever the case, I will be doing what I can from home and I hope when I post again closer to the date that each and every reader will take a few minutes to write their legislators with me.  If I can't be there, my voice and hopefully each and every voice of my readers will be heard.  So, stay tuned.  :)

Fragile X Awareness Day is less than 6 months away, and I have PLANS this year., secret plans.  I can't WAIT to share them.  Hopefully I'll have something I can share in the next month or two so others can make plans with me.  

1 comment:

  1. Great post Cortney! So glad that the dosage is working for Ayden. Following his progress with STX209 has been helpful for us. I also agree about the money thing. Sometimes you just CAN'T do it all, especially if you are staying home with your children. Thank goodness for the internet and staying involved in other ways!