2011 In Review - Part 1

I feel like this year is closing a chapter on my family's life that is going to be much better closed than open.  Each year I like to look back and reflect on the previous year, but those same thoughts of the past year bring on anxiety and panic attacks for me.  Despite all this, we did have good things going on amidst the bad and want to share a bit of our year (good and bad) with you. January - We rang in the new year (or...

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Christmas Time

I love Christmas.  I love spending time with family, the food, looking back at the past year...but when you are doing extra traveling, messing with schedules, tons of people, and activities that aren't normal it just can wear on your little ones.  Especially those little ones with sensory issues that need the consistency of a schedule to help them function their best. We've been very lucky with Christmas time.  Each year...

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What to do when nothing seems to be working...

It's been a while since I've posted.  I mostly try to keep this blog very upbeat and positive, a place where I can share information and help others out.  Being positive is a very large part of that for me, so when I'm having a rough time, I tend to not post.  But, part of this life for us is dealing with those down/hard times as well as the good times.  So today, I'm going to share some of the more difficult parts of our life lately. I mentioned on here a few months back about how we were having problems...

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iPad App Review - Kandy Fish

For my first app review, I want to look at an app called Kandy Fish,  Kandy Fish is an Educational App for iPad by Emantras Inc.  The app sells for $0.99Edit 10/13/2011:  The developer of Kandy Fish emailed me yesterday, less than 24 hours after the initial review.  I think that says quite a bit about the company for such a small blog like mine to be recognized.  Thanks, Punflay! This particular app is one of...

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iPad Apps - An Introduction

I finally went out and learned how to take a screen shot on the iPad, so now I just need to get it out of Ayden's hands to actually get some screen shots of our "favorite" apps and get some reviews going.  For now, I'm going to start with an introduction to choosing apps to put on your iPad....  Because the most common question I hear from parents of kids with iPads is...what apps?  There are SO MANY out there and many of them have the same type of information just put together in different formats.  So...

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Minocycline Trial

We received a nice call a few weeks ago asking to enter Ayden into a clinical trial at the Mind Institute.  It turned out that he actually surpassed the age limit on the trial between sign-up and when they would be actually doing the testing, so we couldn't get him into that specific trial.  It is all seeming to work out though, as the same person was running that trial as is running the upcoming Minocycline trial!  She was very kind, and informed me that Ayden would for sure get into the Minocycline trial, to...

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Oh, Brothers!

We have an interesting phenomenon happening in our house recently.  First, we have Ayden who is pretty much completely non-verbal.  Second, we have Issac who at 2.5 never ever stops talking is now speaking in full sentences.  I don't talk about Issac much on here, and mostly that is because he's developing at what is considered the "normal" rate for children.  It's certainly not that he's less important, but I try to focus on what it's like living with Fragile X in our lives.  I'm sure the older he...

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The Big Reveal and A Big Win

This weekend was a busy one for us.  Being this is our last baby, we decided instead of calling everyone to tell them about baby's gender that we would have a party to celebrate and share with our entire family at the same time.  It's a new "trend" in pregnancy right now, to have these parties called Gender Reveal parties.  Normally, a gender reveal party works like this:  Mom and Dad get the ultrasound done, and...

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Where Have We Been?

Seems like 2011 keeps finding ways to knock me down, but I keep on getting up!My newest adventure involves yet another trip to the emergency room followed by another surgery.  I was fine last Saturday morning even participating in the JDRF walk with my nieces' team and spending the afternoon with family.  By the time 7 PM hit though, I was in so much pain I could barely move - abdominal pain is nothing to joke about under normal circumstances, but being pregnant, I called my OB who had me come in to get checked out. ...

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45 Lessons Life Taught Me

Sometimes, you're given just what you need to make it through the day.  A fellow FX blogger shared this on her blog today.  I thought I would take a few minutes to share with my readers as well.Written By Regina Brett, 90 years old, The Plain Dealer, Cleveland , Ohio"To celebrate growing older, I once wrote the 45 lessons life taught me. It is the most-requested column I've ever written. My odometer rolled over to 90 in August, so here is the column once more:"01. Life isn't fair, but it's still good.02. When in...

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First Day of School 2011

Since this is our first year of school that I've had this blog going when school starts, I wanted to start a new tradition for Ayden.  At the beginning of the summer, I was able to post our first and last day of school pictures from the first year in ECSE.  Well, this year I decided to write a letter to Ayden.  Not the typical "this is how Ayden is doing" but instead a letter meant especially for him that hopefully I can...

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