Emma started physical therapy yesterday. I am having a hard time wrapping my head around the fact another of my kids is in therapy, but I know it is for the best. Our PT is pretty awesome. I really liked her from the start, and after our first session I like her even more.We started Emma on some exercises to loosen her legs and trunk area where she is having high tone issues. It's not terrible, but the exercises do help. We do a few reps after each diaper change (though I may start before so we...
Friday, April 27, 2012
Tuesday, April 24, 2012
IEP Season
Most people get into April and May and think about how the school year is coming to a close. For those of us with special needs kids, it's a little different. It is the time of IEPs and setting goals for our kids for what we would like to see them accomplish in the next year.This year is an important year for us. We have the big decision coming up for Kindergarten. Ayden is on the cusp really where we can easily hold him in ECSE a year or move him to kindergarten if we choose. We had planned...
Thursday, April 19, 2012
EarlyOn - Take 2!
I couldn't help but have flashbacks back to 2009 as I was waiting for the EarlyOn team to come and do Emmalina's initial EarlyOn evaluation and IFSP. I tried not to think about it much, but those were some rough times for this mom. For me, our Fragile X diagnosis came during those initial evaluations - not in the form of a southern blot test performed two years later. The whole process of acceptance was just out of order for me I guess. Denial certainly came first, but by the time we had contacted EarlyOn...
Wednesday, April 18, 2012
Minocycline Update - Week 3
Week three of the minocycline has come and gone. Not much new to report this week, we're really seeing much of the same. The initial boosts we saw the first week or two seem to have tapered off, but the results are still there. Ayden really is doing a fantastic job communicating with us. It's not exactly the speech we were hoping to see, but he is trying and that is more than before. We went through a small phase as we do with any time he starts to communicate new ideas where he would be frustrated...
Tuesday, April 17, 2012
Ch-ch-changes!
With so many changes at home, I figure it's a good time to update the look of the blog a little too. I still have a couple things to add to "complete" the change, but they are small and really not super noticeable unless you're looking.Please leave a comment and let me know how you like it or if there is anything you'd like to see added. I know most people that read don't leave comments, but maybe just make an exception this time aroun...
Monday, April 16, 2012
What Does It All Mean?
So, another FXS diagnosis...what does it mean for us?More evaluations. More worrying. More watching. More waiting.I've only gone over Fragile X in relation to Ayden, so let me explain a bit again. FXS is carried on the X chromosome. Boys have one x from their moms, girls have two x - one from mom and one from dad. So, Emmalina received dad's good x, and mom's fragile x. Simple, right? The complicated part is this: with girls, they only use one x; however, their body...
Friday, April 13, 2012
A New Reality
"Anyone can give up, it's the easiest thing in the world to do. But to hold it together when everyone else would understand if you fell apart, that's true strength." - Christopher Reeves
I've had days where I felt like giving up. Where curling up and escaping life seemed much easier than getting out of bed. I wonder why me and my family were given this genetic disorder, a fragile x chromosone that travels silently through generations. A grandfather with Parkinson's. An aunt who was...
Tuesday, April 10, 2012
Minocycline Update - Week 2
So, we're now inching into week 3 on the minocycline. I'm noticing two pretty big things happening with Ayden.
First, there is certainly an increase in the type and amount of sounds coming from him. His humming that he has done forever has turned into a mix of sounds/babbles and humming all mixed together. He will look at you and babble away as if telling you something, but it is usually not able to be understood. Along with this is also an increase in communication. He's trying so hard to communicate...
Tuesday, April 3, 2012
Occupational Therapy Eval
We had yet another occupational therapy evaluations last night for Ayden. We've been on the waiting list for quite a while for this appointment so it was nice to finally get it taken care of.Evaluations have never been easy for me. For those that haven't been through one of these wonderful things, it usually involves sitting around a table asking your child to do simple tasks that tell the evaluator what skills he or she has. They are looking for the "age" at which the child is testing, so they will start...