Thursday, November 15, 2012

The Blankie Disaster

I started sewing around the time I was pregnant with Issac and his blanket (which he still carries around) was the first one I made.  I easily fell in love with it - sewing that is - for the same reason I love cooking from scratch.  So much love and care goes into the process and the finished product is tangible.   It's also relaxing and just fun to do.  I've since made quite a few baby blankets, but none I was so proud of or so much in love with as my baby girl's blanket.

I thought I would be smart this time and make two blankets since my kids seem to attach to blankets a lot. (I actually learned from speaking with other FX parents that most Fragile X kids are pretty clingy to their blankets fact!)  I made almost matching blankets, which in the end turned out not to be as helpful as imagined.  Each one had the same print on one side and the opposite side was either pink or brown.

It actually turned out not to be the smartest of ideas.  I ended up liking the pink one the best, and so did Miss Emma.  When she was born, her blanket was the first thing of hers she was put in.  Almost every single picture of her at the hospital has her wrapped lovingly in her blanket from Mommy.

At home has been no different.  Until she started sitting up almost every single snapped picture of her has been with her blankie.  Every time I rocked her and cuddled her to calm her down through her episodes of night-time screaming that lasted for months she was cuddled up with her blankie.   It was never far from her side.  

Then a week or so ago, we were at the doctor's office.  Ayden wasn't feeling well and attempting to throw himself on the ground in the parking lot.  It was just me with the three kids and somewhere between the pediatrician's office and the van Emma's blankie disappeared.  I didn't notice until we were at our next stop getting out of the van.  I went back.  A very nice woman had found the blanket and brought it into my pediatrician's office which is a room in a larger building.  They told her to put it on the bench in the hallway not knowing it was ours.  I know it was placed there because other people in the building saw it there.  However, in the five minutes or so that passed between this nice woman placing the blanket there and me returning, someone picked up her blanket and took it.  I gave each office in the building my contact information hoping whomever took it would find a way to get it to the building manager.  It has been almost two weeks now, and it hasn't turned up so I can only assume it will not.  I am utterly devastated.  I can't even talk about it without welling up with tears.  I know we have the brown one, but it isn't the one she loves.  It's not the one she cuddled with.  The worst part about all of it is that it's my fault.  If I just would have been handling everything going on with Ayden a little better and paid a little more attention I would have noticed it was missing before we left.  I can only hope the person that took her blanket needed it and that some little girl somewhere is a little warmer and a little happier because of it.

While it isn't exactly a happy ending - I am very thankful that the fabric store still carries the snuggle print I made her blanket from.  Yesterday I was able to sit down and work on this:

Then later that day, my fussy little girl was reunited with her very special blankie.  While she will not realize it's any different, I still will know. But...I am happy my little girl has her favorite blankie back.

This time, we have a backup that is pink.  
Just in case.


Tuesday, November 13, 2012

STX209 - Update 2

Leave a Comment
We are now two full weeks into the trial and have completed Visit 1, 2, and 3 out of 7 total.  Our second visit (technically Visit 3 of the study because Visit 1 and Visit 2 were combined for us) took place last Friday.

We were informed at that visit that if we are on a higher does, we haven't yet reached it.  She didn't explain exactly, but said something to the effect of we would be at the steady dosing (not being tiered up) at the 4th visit.  That is of course assuming we are not on the placebo and we are on a high dose.  The only reason this information helps is for watching for a dose that is too high for Ayden.  Some kids when they get on too high of a dose actually have the opposite behavioral issues occur instead of the once we are looking for.

Changes we have noticed, well, they are minor and could all be attributed to a really good day for Ayden (see story below) or just normal development.  Here is what we're noticing...stressing that these could all be due to developing and work at school.
-- Less spinning
-- More purposeful play with toys
-- Requesting to do non-preferred activities (like coloring)
-- Sitting still for more than 5 minutes when not doing preferred activities
-- Less overall anxiety

So, that is a short update on changes...but I do want to share a little story about this weekend.  I know for someone stumbling upon this blog that hasn't met Ayden and doesn't know us this won't mean a lot...but for those that do, and that deal with a fraggle with anxiety issues - this is kind of a big deal.

On Friday, we took a full day trip to and from Chicago for Ayden's visit.  That's 8 hours total in the car.  He had really high anxiety that day (not unexpected), but it was somewhat worse than normal.  The blood draw wasn't pleasant, but it went MUCH better than our previous visit.  It was just a lot of whining and fussing all day.  Recovery from a day like that usually takes a day or two for him, so I expected us to be back at 'normal' anxiety levels by Sunday.  Of course, we have always tried to push a little bit though, so we made plans to attempt a birthday party that weekend.  At an inflatable bouncy house.  That was loud.  And chaotic.   Oh, and with people Ayden had never met before.  I'm typing this and wondering what in the world we were thinking because those things are ALL triggers for his anxiety and it was the morning after our Chicago trip.

You know what though...Ayden did amazing.  Super amazing.  We walked into a large, gym-like room that was loud with kids running everywhere and screaming and he didn't even hesitate, not for one second.  He was pushing Emma's stroller and I can honestly say I don't even think he looked back at me for a visual "You're fine" like he usually does.    Once we got his shoes off, he started to just run off to play.  I had to make him wait so we could see where he was going.  He had SO much fun.   We had minor problems when the birthday boy was opening gifts, but they were just that - minor.  Mostly he was just asking to eat the pizza and cake sitting on the table and we were telling him to wait.  But it was  two of his favorite foods and he was just STARING at them - can't blame a kid for that, really!  He barely even reacted to everyone singing "Happy Birthday".   It was just a really great experience.  Whether we are actually on STX209 or we're on the placebo and seeing some new developmental changes - I honestly do not care.  I just hope we see MORE of these amazing days to come!


Tuesday, November 6, 2012

STX209 - Update 1

Leave a Comment
We are one week into the STX209 trial.  The past week has been somewhat of a blur for me between the trip to Chicago (was that only last Monday?!) and all of us being sick including Ayden.  After the trip on Monday and because of some stomach issues we ended up keeping Ayden out of school Tuesday.  I sent him on Wednesday for his Halloween party and he did amazing.  On Thursday he was back again, but after over 24 hours of no stomach issues had a terrible diarrhea accident (relapse of the sickness, I assume).  The school sent him home and he was kind of lethargic and whiny all day so I Friday we kept him home again for a trip to the doctor.

So, one week out and yesterday was his first 'normal' day back in school.  Except his ASD teacher was out and his actual GenEd teacher had her first day back from maternity leave. Then mom went and changed sissy into her big girl car seat while Ayden was at school yesterday too.  We also haven't received the paperwork back from the clinic that the school needs in order to give him the trial at school.  Not a huge deal, but it is pushing back his bedtime and disrupting his schedule by about an hour.  Plus daylight savings time.  Did I mention it has been a crazy week?

Looking at all the changes in routine and sickness, I still am not sure whether we are seeing changes.  He handled everything so well, but better than normal?  I can't really say.  Our next visit is Friday, and I'm planning on speaking with his teacher to get her impressions too.   I'm hoping as the week progresses on a more normal schedule that I'll have a much better idea.