Bath time reflections

It has been a really good day with Ian.  He's been funny and sweet and very animated all day.  I love days like this!

During his bath tonight, I stopped and looked at him.  I mean really looked at him.  Sometimes we get so caught up in the day to day routines that we are on autopilot and just don't take a moment to see what is in front of us.

Tonight I saw my child for the miracle that he is.  I saw the one person on the planet that came from me.  Not that it's all about me, of course.  But, I am so proud that Rob and I created such a beautiful human being.  Yes, he has his challenges but he has taught me so much.  Anything I've had to "give up" to be his Mom has been replaced ten fold with what he has given me.  Sweet hugs.  Little pats on my arm.  Belly laughs and giggles.  And our silly bath times.

When Ian gets out of the tub, he will throw his arms around me and give me the best hugs of the day.  I don't even mind getting wet, it is a joy.  I want to remember these moments forever!

Ian in the bath when he was around 2 years old

Ian's Birthday

Ian turned 11 on January 10.

After much debate over the pros and cons, Rob and I decided to get him an iPad mini.  It took some doing, but I found one at Best Buy two days before his birthday.

I found a perfect little case for it on Amazon, and it arrived on this birthday while he was at school so I had a chance to set it up.  Pretty cool, and sturdy too.  It even has an easel!

Instead of a cake at school, the teacher and I worked it out that Ian would have a pizza party.  I came over and brought some cookies.  Here he is with classmates and a few of the aides.

After he got home, we had him open his presents.  He seemed
pretty surprised about the iPad, but it didn't take long for him
to turn it on.....

and then take off!

After presents we went to Buzz and Ned's for dinner and Ian did great.  We brought the iPad along and he was a happy camper and Rob and I got to enjoy a nice meal.







When we got home, Ian got a big bowl of strawberries with a candle for his birthday treat.  All in all, a pretty good birthday for the little man!

Counting Down to Duke

A week from tomorrow, Ian and I will be leaving for his first appointment at Duke.  After he gets home from school on Monday, February 4, we will get in the Trooper and drive to Chapel Hill.  Although the study would put us up in a hotel, I think for at least the first visit we will stay in a familiar place to both of us, my sister and brother-in-law's home.
 
Now that the time is approaching, I am starting to have a tiny bit of apprehension.  What will all of this be like?  Will I remember all the things I need to bring for Ian?  Will this change in routine totally freak him out?

 We have participated in several studies before; one at UNC and one at the University of Wisconsin.  The UNC study involved MRIs of the brain to check for differences between Fragile X and the rest of the population.  This involved Ian being sedated, and let me tell you, we had an interesting drive back to Richmond after that!  Like his Mom, Ian and sedation are not best friends....

The study in Wisconsin was more about behavior and language and was quite informative and interesting.  The worst part of that one was the blood draw at the end, ugh!
 
But, this study will be quite different.

 First of all, it is a big commitment.  We have 6 appointments and we were nicely told that we are expected to be at all of them, barring bad weather or some kind of emergency.  I have no problem with that; this is quite a big deal and I'm sure there is a lot of money involved.

Second, this study will involve medication.  We are not new to medication, but I know that Ian reacts better to some than to others.  Of course, since it is a double blind study we may not be on any medication at all.

Third, Ian will have to miss some school for this one.  All of our appointments are on Tuesdays, so he will miss 5 days altogether. (one of the Tuesdays is during Spring Break.)  I'm hoping his routine isn't disrupted too much; this is the only time we can do this.

I put a short article about our upcoming "adventure" in the newsletter at my church.  I told them a little bit about Fragile X and how it affects Ian and asked for their prayers to help us through this next challenge.  The response has been incredibly heartwarming, and I have been deeply touched by the care and concern.  In the article I encouraged them to ask questions, and they have.  And I also invited them to follow this blog.  We are blessed to have this loving group of people in our lives.

Birthday week

Ian's almost eleven!

Okay, seriously, how did this happen?  People say it goes fast but when you're in the moment it can seem to drag on and on, especially with a child whose development is glacial.  But, I can still remember the time around his birth day like it was yesterday!  

A few days before he was born we had snow, which is not something we see a lot of here in Richmond, even in January.  I woke up and saw it and worried about whether it would snow on January 10th, which was the day for the planned C-section.

I remember going to Target to buy some last minute things and having a woman come up and start going on and on about how I should really get a doula.  What?  I didn't even know this person!  

I remember seeing the little scrunched up face for the first time, and the joy of holding this little man at last.  Love at first sight and touch!

I remember coming home on a cold and clear winter day after 4 long days in the hospital, and being so happy to sleep in my own bed again...even though there wasn't much sleep!

I remember our first walk around the block, and the long nights, and the poopy diapers, and the general exhaustion.  I remember it all.

But I still have a hard time believing that it all happened eleven years ago!

Holiday Review

Overall, the holidays went well for Ian.  For Christmas, he did not get a new iPad or anything flashy.  I bought him some clothes, a new coat, and his "Santa gifts" were Mickey Mouse things...a stuffed Mickey, a book with a lot of his sight words, and a travel cup.
On Christmas morning, he was very excited with these things.  We have learned over the years that he is not like a "typical" kid when it comes to opening presents.  He actually seems downright reluctant to do it.  So we start out with the Santa gifts, have some breakfast, and then ease into the rest of the presents.  You just cannot be in a hurry.

Probably the most excitement was when Ian opened a surprise gift from Rob.  I didn't know what it was either, so it was really fun when Ian opened up a Sponge Bob doll!  I'm using this picture, even though it's blurry, to show how Ian reacted to this present.  He literally ran around the house like a little nut.  It was so funny!
After opening our presents we went to Grandma's house for Christmas dinner.  Ian went into his usual mode, which is watching DVDs on his portable player while the adults did their boring stuff.  He walks into Janie's house, sits in the same chair he always sits in, and that's it.  It bothers me, but what can I do?  Of course, most 5th graders would be glued to a DS or other game system, so I guess it's not that different.  But still.  He will absolutely NOT open presents or sit with us at the table, no matter how we try to persuade him.  So, after dinner and presents, we left and came home.

It was a big day for Ian, with the presents and the travelling and everything.  I've started a tradition of sorts, where I take a picture of Ian in bed with his new toys on Christmas night.  I'll close with that.