Clinic visit April 19

 We had our fifth visit to Duke on Friday, April 19.  I actually had to double check my calendar to make sure that was right...five visits are done!  We only have one left, and that will be on May 8.

The back seat buddies

 The sheer logistics of these trips has been interesting and challenging at times.  Ian is generally a good traveler, but we have to have everything in place to make things go smoothly.  In the car he watches movies on his portable DVD player.  We have snacks with us to minimize the number of stops on the road.    Of course, things have gotten much simpler.  We used to have to travel with the pack and play, the high chair, diapers, bottles, etc.  Now I just have to remember the electronics and all the accompanying chargers!

I'm not without my entertainment needs.  While Ian watches Kung Fu Panda for the 900th time, I'm listening to an audiobook on the GPS Rob gave me for Christmas.  The drive between Richmond and Chapel Hill is a fairly boring one, so I have to do something to keep alert for almost 3 hours each way!

The North Carolina Welcome Center

 Now that Ian is 11 (although he looks much younger) taking him into the ladies' room is getting a little awkward, so I'm thankful for the North Carolina Welcome Center.  It's about halfway on our trip, and it's always clean and they have a very nice family restroom.  I highly recommend it if your travelling that way!

Another one of Ina's cocktail recipes

 We arrived at Mary and Jim's in time for the evening news and cocktails.  The pictures of the suspects in the Boston Marathon bombings had just been released.  Mary had made another fantastic meal and we had a nice evening.  I'm so glad we had the chance to stay with them for 4 of our visits.

The view from the parking garage

 On Friday morning, Ian had to have his first dose of medicine at 5:30 so we actually got to Duke early.  We're old pros now with the parking garage routine.  And here is where Ian started doing some really nice things.  We usually take the elevator down to the level with the "bridge" over to the clinic, but it was running slow and there was a HUGE crowd.  So, we took the steps, even though I was worried he would freak out with the change in routine.  Not a bit, he just followed me like it was the way we'd always done it.  Then, instead of going to the clinic, I wanted to go to the Food Court for some coffee and he did that just fine too, even though the line at SBC was too long and we turned around and left again.  Oh, and this is all without the iPad in hand.  Woohoo!

So, we had a (mostly) fantastic visit! Right off the bat  Ian had an accident in his pants, which I was thankfully prepared for.  I was worried that would mess up the whole day, but he turned it around and was the best patient he has ever been!  Blood pressure, temperature, EKG, his behavior was perfect with them all!

Ian was a model patient

 On his first visit the EKG was extremely hard.  It took 4 of us holding him still to get it done.  On this visit, he did it all on his own!  He was quiet and well-behaved while I had an interview...

He sat quietly while I had an interview

 he did great in the noisy and crowded food court...

Lunch was a little late, and he ate his fries and mine too!

 and he listened and followed directions during his physical with Dr. Lachiewicz.

Ian with Dr. Lachiewicz

 He especially liked her hammer to test reflexes and copied what she did.  On our first visit, he wouldn't even let her look in his ears.  We've come a long way!

The bridge to the garage

 Finally, it was time to walk over the bridge, back to the garage and our car.  He knew we were headed home to Daddy, Ashby and Pups, and he was happy.  Another successful visit to Duke!

An "Ah Ha" Moment

This will be a quick post because I want to get it down before I forget about it.

Ian's first day back after Spring Break was today.  Typically he has a rocky day or two before settling back down into the routine.  On his daily sheet he got a "frownie" for his keyboarding time.  He smacked the keyboard and said "Shut up."  Once I read this, I told him he would have to do some keyboarding time with me.

To try something new, I put his dry erase board/chalkboard combination next to my desk and wrote down the words, one at a time, and had him copy them.

At first he was annoyed with me and the whole thing.  I reminded him that he had misbehaved and would have to earn back his iPad time.  Things started to turn around.

Then he kept mixing up "m" and "n" but that turned around too.

I picked some words randomly, twelve total, and made him type them all.

As we got to the end, he was GETTING IT.  It's difficult to explain, but he was sounding out the letters and reading the words back and HE WAS ENGAGED.  I've been doing homework with him for a long time, and this was the first time it felt like something "clicked" and it was amazing.  Simply amazing.  I had a glimpse of the child that I know is in there.  We just have to get the noise in his brain turned down and I think he will do just great.  I think that the STX209 may be working just enough so that moments like this are possible.

My previous post was a hard one to write, and I know for some it was a little hard to read.  I was down, I was stressed about middle school transition, and it came out in that post.  But that is my world.  Those days make days like this one even sweeter.

Catching Up

Since my last post, we have had another visit to Duke, Easter, and Spring Break.

Our most recent clinic visit was on Tuesday, March 26.  It was a busy day for the clinic staff, with 4 families there at once.  Ian and I were put up on the third floor in a nice quiet room by ourselves.  Once he got over the fact that we were not in our "normal" room, he settled in fine.  The day was mostly uneventful and we were out of there fairly early and back in Richmond in time for rush hour....


At this point, we are now in the part of the study where the medication dosage (whatever it might be) will stay the same for about 4 weeks.  Prior to this, the dosage was gradually increasing.  At this point, I'm wondering if we are on a very low dose or even a placebo.  Ian continues to be very withdrawn .

Ian and his Sponge Bob Easter basket

 I was hoping he might have more fun on Easter, but he was very reclusive.  Yes, we did have people over for Easter dinner, but he chose to steer clear as usual.  He showed minimal interest in his Easter basket, as usual.

After our dinner, we went outside to play croquet.  Ian did show a bit of interest, but it was short lived.  He was mainly interested in following the dog around.  Have I mentioned that holidays can just be so hard?

Ian with Grandma and the boys for croquet on Easter

Spring Break is the week after Easter this year.  Rob has school, so we didn't make any plans to go away like we did last year.  Trying to keep Ian occupied and engaged is a challenge, and I am so ready for him to get back in his school routine.

On Tuesday I took him to see The Croods, and that went quite well.  Even though the theater was crowded, and sometimes noisy, he did great.  I brought the old iPod along for him to have something to hold onto when we left the theater; I've learned that that is hard for him with all the people and noise and darkness.

Going to the movies

On Wednesday we ran some errands.  We went to the recycling center, Target, Goodwill, and our local garden center.

Making silly faces for the camera at Target

Ian had great fun at Target and was rewarded with a DVD.  He picked out a Max and Ruby Easter DVD, which was okay seasonally, but not age appropriate at all.  I was hoping he was growing up with his TV choices when he started watching Teenage Mutant Ninja Turtles, but now we have some regression.

On the way to the Garden Center, he kept talking about seeing Brian and Mike.  Mike is the owner and Brian is his grown son.  They are the kindest people and have known Ian since he was a baby.  Brian got Ian a wagon to play with while I picked out some flowers.  We had a good visit.

Checking the iPod while Maryanne packs up our flowers

 When we got home, "we" dyed Easter eggs.  Ian was not especially interested though he participated more than he has in previous years.  Of course, he got sidetracked looking for a lid to a container for awhile and when he put the eggs in the dye things got kind of messy.  But, we did it.

Looking for a lid

The weather improved and we've spent a lot of time in the yard.  Soon we will plant our "garden" again like we did last year.  In the meantime we are working on transition to middle school and looking forward to our next visit to Duke on April 19.