Brief Updates

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 blog...is 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.  Plans..fun, 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.  

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Grief: The Silent RAWR

I'm so excited to be sharing the first of a series of guest posts by my friend Marie at All Things RAWR.  I have had the privilege of seeing her help and inspire so many people and just be a positive light in this world when the world certainly gave her a reason not to shine.  I asked her to write on a couple other topics related to [Fragile X] carriers, and she hit me with this first -- a post that quite literally brought me to tears.  I hope you are all as inspired and touched by her words as I am.

Grief. Loss. I am not a fan of those words for so many reasons, but they hold weight over us in a way that few other words are capable of. 

Searching for clovers and finding peace

Grief we feel, loss is what we almost had or had once upon a time. Beyond the letters themselves, there are few other words that can adequately describe to another human being what grief feels like. Wanting someone to understand grief without experiencing a loss is, in my humble opinion, darn near impossible. What is also striking is that the loss or reasons for grief can vary dramatically from person to person but the depth of pain, hurt and fear knows no bounds.

Whether you've lost a friend, a grandparent, a parent, a spouse, a child, a fur-baby or any other being or maybe even a job or the dream of a future, it hurts. It hurts a lot. It feels like your heart has literally been shattered into pieces, left in broken tatters. You wonder how you haven't died from a broken heart…yet. You wish you could go with them just so the pain will stop. You wish you could turn back time to when that future was possible. Each breath hurts. Each smile takes pain to crack. Some days you wonder how you will ever carry on. 

I say carry on because moving on is not possible. You will never forget, not for a day, rarely for a moment. Moving on, getting over it, letting it go, growing up, all of those mean words imply forgetting. You can't forget. Forgetting is not an option. Carrying on is. When you carry on, you carefully and compassionately pick up the pieces of your broken heart (oftentimes with help) and with a brave face, move into the next present moment. You carry your loss with you, in your heart. The scars on your heart make you stronger. If you allow it, the cracks in your heart let love sweep in and out like the ocean waves. 

Grief hits your insides like waves, sometimes a large wave tumbles over you when you least expect it. Sometimes you brace for impact only to find the wave barely crossing your toes. To lessen the waves of grief, there are things you can do. There are tools to help you find and pick up those broken heart pieces. 

When faced with a wall of grief and a shattered heart, it is time to mourn. Mourning is the work you do to process the grief. Mourning takes many outward forms: crying, writing, crafting, talking, sharing and so many more. Mourning is what saves us. 

You will mourn not only the past and the present but also the future. Honoring the future you thought you had by acknowledging the present you've been given requires a strength that feels impossible to summon at times, but is absolutely possible. 

If any of the above strikes a chord with your heart, I encourage you with all of mine and all of my RAWR to find a HEALTHY outlet for your grief. Many people turn to destructive behaviors which will only cause more pain and suffering. It takes strength to talk to a friend, go for a walk, cry, smile, write, sing, play, work, create, and mourn. 

Just when you think you can't go on, you can't possibly be strong enough to [insert mourning activity here], that is the moment to think of your loss. Feel the love you had for that person or dream. It is in that love that you will find the strength to carry on. 

I carry on. I am a survivor of grief. I mourn. I mourn on a daily basis. This post is my mourning. This post, and so many other moments of mourning are what saved me. What moments of mourning have or will save you? 

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Speech Video 01/23/2013

Our last speech video was created on December 5.  At that time, we were at 24 words and 9 different isolated sounds - all made with little to no issues.  I encourage you to go back and watch that video before this one to really get a good idea of the changes.  December 5 Speech Video

I took my previous post and started to go through the words he was successful with at the last video when I made this.  The words at that time:  Ayden, Mommy, Daddy, Issac, Emma, sissy, car, cupcake, turtle, turkey, oink, gobble, quack, woof, moo, yeah!, bubble, bus, birds, fish, ball, apple, brother, eagle.  And the sounds:  /b/, /g/, /t/, /p/, /c/, /s/, /a/, /m/, /i/.  We barely made it through half the list and you'll see him slowly lose focus more and more as well as protest.

I didn't count today for an exact number, but we're back to about 5 words.  Maybe 10 with a lot of pressure.  The last video was taken right before we started noticing things getting worse in the double blind portion of the STX 209 trial.  Ayden became considerably worse over the course of the next six weeks while on the maintenance portion and into the titrating down portion of the trial.  His speech slowly regressed along with a lot of other gains.  I wish I would have done this before we started the open-label, because while this is bad it is still better than it was a week ago.  We are 5 days into the open-label where we know we are receiving the medication and are beginning to see a bit of improvement in his focus and speech.  I am hopeful as we get his dosing correct in the open label that we will begin to see these gains return and our next speech video will be much better.

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Project 365 - Week 3

Another week down, 49 to go!  Week 3 of Project 365 is completed (even though this post is a day late).  Here's a little snippet of our life from the past week, though one large event is missing - the loss of the diamond from my wedding ring.  This event is also the reason this post is late as I wasn't by the computer to upload it yesterday, instead running around getting a new diamond in my ring.  Look for the picture of that in next weeks edition.  You can view full sized pictures and previous weeks at the photostream located HERE.

My favorite from the week was again another black and white, taken on Day 18.  This one was on one of our many recent trips to Chicago for the STX 209 trial.  Our final visit of the double-blind portion of the study and first visit of the open label extension.  This was taken after a 4 hour drive followed by a 4 hour appointment.  We were changing into pajamas in the back of the van before we left for home.  Low light, no flash, and snapped over two rows of seats - it portrays perfectly how I remember moments like this.

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Project 365 - Week 2

Here is the second week of Project 365.  As anticipated, I had a few busy days and not as much time to pick up my DSLR which is why I didn't limit myself to only taking pictures with that medium.  You can visit the full photostream HERE

My favorite picture this week was probably the most difficult.  There is this tree behind our house that I love.  Everyone loves this tree...there is just something about it.  I've always tried to get a neat picture of it, but did not succeed until this week!  Not only did I capture the tree very well, but it was captured under cloudy, snowy conditions.  It turned out exactly as I wanted it to though, something of which I'm pretty excited.

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STX 209 - Update 4

On Friday we will make our final trip to Chicago for the double-blind portion of the STX 209 trial.  In the time since I posted my last update, things went from mildly frustrating to pulling out my hair frustrating.  The whole thing culminated last Friday with me taking time to go into school and observe Ayden to see if we could brainstorm some ideas as to how to deal with everything.  (bear with me while I try to organize what led up to this)

Over the maintenance portion of the trial we slowly saw all the good things we had been seeing with Ayden all but disappear.  We had seen gains in focus, socialization, anxiety, speech, less stim behaviors, and small things like starting to use toys correctly.  When we went to our last appointment and looked back to the differences - we saw drastic decreases in every single area that had made gains.  I want to reiterate that these decreases were seen during the maintenance phase.

I briefly mentioned the aggression issues we started seeing in the maintenance portion of the trial as well. While the issues were minor things such as hitting himself, throwing himself on the ground, or slamming his head into a wall (which sounds worse than it is); every so often we would see a hitting incident occur towards another individual.  We've dealt with hitting before...but it was different.  Ayden used to hit Issac when he was younger.  I think the worst of hit was around 3.5-4 years old where he would actually stop doing an activity to walk over and hit his brother. He would also swat at me on and off, but these incidents were isolated to times where he was already hyper-aroused and I was attempting to help him.  Those types of things involve bear hugs, deep pressure and just generally actions that require me to be right in his personal space.   The thing about those prior instances is they were always toward an immediate family member and we had not seen them for quite some time. I want to give background on this, because while on the maintenance portion we not only saw the emergence of hitting as I described above, but also had an incident at school where he actually hit his para-educator.

So now we are on the next portion of the trial, titrating down from the medication (or placebo).  We started this process almost two weeks ago and since then, behaviorally, Ayden has almost been unbearable.  Just a few days in to the new packs we noticed a decrease in aggression.  While it was less in number though, it was worse in degree when it did happen.  As the first pack progressed, we have seen Ayden not just losing the abilities he achieved over the course of the trial, but also a regression of some behaviors back to things we haven't seen in a year or two.  Re-emergence of stim behaviors and anxiety especially are bad.  Those two things lead to a lot less socialization as well.  As one can imagine, these affects are seen the worst at school.  He's having a difficult time focusing ,so work is harder which is making more anxiety.  He's being made to do things that are difficult which also means more anxiety.  Then frustration is piling on top of that - I imagine because he is unable to do things he could do just weeks ago.  All these things just lead to one very sad, anxious, over-extended little boy.

As I mentioned above, I went in Friday to observe Ayden during school.  I was only there for an hour, but it was much worse than I expected.  He basically spent the entire time staring at moving objects hanging from the ceiling (this was during calendar/weather time).  As he moved into group work, he refused to do things every time it was requested of him.  He would walk around, stare at the ceiling...basically anything to not do what he was told.  When he was forced to by hand over hand...he started clearing materials from the desk and attempting to throw them as well.  I left after about an hour.  I had gone to observe what they were seeing and give some ideas as to how we could help, which I easily had in the time I was there.  It was utterly heartbreaking to watch though.

I was home for about an hour when I received a call from school.  After I left he had hit his para-educator.  Our school district has a very strict policy on hitting.  The child is taken to a time-away room and a timer is set.  After the timer buzzes, the child is then given a puzzle (or other similar activity) to complete to show they are ready to return to the classroom.  When I received the call, he had gone through 4 timers already ending in throwing the timer, throwing the puzzle, throwing himself on the ground...you get the idea.  As I was on the phone with his teacher, he finally complied with the puzzle and was returned to the classroom at which point he cleared the gen ed teachers desk and then attempted to hit another child. (which THANKFULLY was blocked by the para-educator).

After all this, I put in a call to the study coordinator.  I wanted to be sure they were aware what was happening.  I didn't expect him to get worse while going off the medication.  We were not told what to expect during the process, which I can only assume is because they want an accurate portrayal from us and not a skewed one by them saying "you may see this".  I was very glad I did make that call though.  All these things that we are seeing are very typical when kids are taken off the (actual) medication.  Especially kids that have been on too high of a dosage.  (You may remember, we are fairly certain that Ayden was on too high a dose).  It was a relief to hear this was typical, and even moreso to learn that we were probably at the worst of it and should expect the craziness to level out the closer we get to being totally off the medication.

We've had two more days of dosing in since Friday - and have watched Ayden very closely over the weekend.  Both Mr Awesome and I feel his focus and anxiety was better than it was the previous week.  I am very hopeful this will carry over into school today and we won't have a repeat of Friday.

Our next appointment is this coming Friday at which point we will be enrolling in the open label extension.  I want to just end this post by saying that the past few weeks have been difficult, but the small amount of time we saw where we believe Ayden was on a good dosage gives me so much hope for what this will do for him long term.  I do not regret being in this trial even for one second despite what we are going through right now.  It is a short amount of time in the grand scheme of things.   I imagine the next post about STX 209 will be much happier as we will officially and knowingly be on the actual medication.

More to come...

Edit:  I forgot to add this little bit...we've also been seeing some sleep issues since starting the titrating down.  Ayden will wake 1-2 times per night, but does return to sleep himself.  He also fell asleep in school - which is utterly unlike him.  I believe the night wakings were also something I noticed while we were building up to the maintenance dosage as well.  Not terribly important, but good for others who may be considering the trial.

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I Heart Faces | Best Face of 2012

Just want to note that while my blog is primarily Fragile X related, a lot of photography posts are going to start popping up this year too.  This is something I'm adding in for my mental health, a little getaway from the challenges of living with Fragile X and just being a mom in general.  I've come to realize that taking care of my mental well being is very important to caring for my kids and even more critical being a Fragile X carrier as we tend to be more prone to depression and anxiety.  Hopefully ya'll will keep reading and enjoying!

Since I'm working on my photography this year, I've been following a few other photography blogs.  I ran across one this past week that I'm very in love with.  They host photo challenges, and since I am participating in that nice photo-a-day thing - well, it seems like a fun thing to enter!

This photo challenge is called Best Face of 2012 and requires an image from 2012, so an old imagine instead of one of the newer ones I've been taking.

It's not my best from 2012, but certainly one of my favorites!

As always, remember to follow via RSS, Twitter, and Instagram as well as like on Facebook if you're interested or enjoy my posts!  Either directly from those links or from the buttons at the top of the page.

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Back At It!

Holidays from school are such a bittersweet time for me.  I adore having more time with Ayden.  I still feel a little like I was robbed of time with him by sending him to school so early.  I mean, the main point of being a stay-at-home mom is to spend time with my kids.  I know sending him was the right decision, doesn't change the fact I miss him though.   So..holidays.  I love them because of that extra time with Ayden, but hate them because it also puts him into such a funk to have his schedule that rearranged.  Not just during the holidays, but also when he goes back.  It wasn't a fight to get him out the door, but he wasn't excited to go until he saw the bus.  Of course we had to add to the confusion by the bus driver coming late AND in a different bus then he had to walk in the snow (heaven forbid!) AND he had to change his seat (that he picked and has sat in since he was 3!) because the reason for the new bus and being late was because of a new student who is in a wheel chair who obviously needs the handicapped seat.  He did roll with the changes though, despite the fact he was not prepared for any of them except heading to school.  I did make sure I started preparing him on Friday for that one.  (sometimes, I am on the ball - I swear it!)

So, we are back at it.  Daily routines, school, homework...and all the while being weaned off STX209 (if he is actually on it and not a placebo, though that isn't really a question in my mind).

Speaking of the weaning off...the hitting and aggression we were seeing has slowed down.  It's not gone yet, but we're only one week into the weaning kit.  That we're seeing it reduced is wonderful and completely what was expected.

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Project 365 - Week 1

My first seven days of Project 365.   You can click the image below to go directly to my Project 365 photostream if you would like to see the full image.

This past week I was working a lot with natural lighting and all manual settings.  I've slowly been switching to manual use on my camera since Emma was born, but this week I even went with manual focusing.  I could really tell the difference by the end of my first week with how much more second nature it is becoming.  It will be great to work on my photography for an entire year!

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Happy New Year!

2012 was a great year for us.  While every year has its' ups and downs, this one had some very UP highlights for our family.  Most notably, Miss Emma joined our family.

There are many other things I can highlight, but I just decided to use pictures to tell our story this year instead.  I hope the next year is just as memorable.

As most others, I do make resolutions for the new year.  I read an article this year that talked about how 46% of New Year resolutions are kept and outlined different things that would ensure success with keeping your resolution. 

1)  Be prepared to actually make the change you are resolving to do instead of just making a resolution for the sake of it being the new year and everyone else is doing it.

2)  Make a resolution that is measurable.  For example, saying "I will eat less junk food" is vague while saying "I will only eat one candy bar per week" is something measurable.

3)  Have someone to help hold you accountable.  Most resolutions that fail do so by the 6 week mark.  Having encouragement to keep going is a good way to stick to your changes.

This year, I only have one resolution and it's not so much a resolution as it is a project.  My project is centered around a few things.  First, I have a difficult time following through on things I want to do or plan to do.  I recognize that in myself but have always been unsure how to change it.  Everytime I try to, something else tends to not get followed through on.  Second, I also want to make sure I'm taking time for myself this year.  I tend to get lost in the role of mother and wife all too often and forget that in order to be the best I can in those roles I need to also remember to take care of ME. 

With those things in mind, I have decided to take part in a year-long project called Project 365.  It's very simple in the fact you take one picture each day for an entire year.  I have setup a Flickr photostream specifically to follow my progress through the year.  I'm very excited to not only work on my photography, but have something to show for it at the end of the year!  Look for weekly (Tuesday) posts with my photos from the week and to my photostream each day (located on the side of this blog) to see what I'm doing daily.

Happy New Year!  Here's to a great 2013.  

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