Some new beginnings

I'm going to miss this view

Well, it was quite the summer.  And I can't believe it's been almost 3 months since I've posted anything.  Guess I spent a lot of time working on my tan!

The biggest news for me is that at the end of June I was offered a job!  It is full-time as an ESL instructional assistant at the elementary school where I worked a few years ago.  I credit my former (and now current) colleagues with a)telling me about the position opening up and b)putting in multiple good words for me with the principal.  I will always be grateful to them for their support!  It will be challenging since I have not worked in ESL before, but I'm looking forward to learning a new position.  This will be my first permanent job since I left USAirways 9 years ago!

In late July I got to take a SOLO trip to Martha's Vineyard.  Solo meaning no husband or child, just me.  I met up with my sisters and other family members for a beautiful week on an amazing island.  It was a fantastic trip!

Beautiful Martha's Vineyard

Ian had a six week summer school session that started in early July and ended the second week of August.  We spent a lot of afternoons playing in the pool, when the weather permitted.  It was one of the coolest and wettest summers I can remember.  Kung Fu Panda movies were his obsession, and he knows all the characters names and can do some great impressions of them.  Now I hope he can do an impression of a Sixth Grader because tomorrow he starts (dunh dunh duuuunh) Middle School!

Ian's new school

Yep, the little monkey who still looks like about a 3rd grader on a good day, will be attending our local middle school.  (BTW, what better name for a middle school than MOODY, ha ha!)  I have been mostly okay with it, but here I am the night before the big day and I am scared spitless.  Because while he is there, I will be here.....

My new workplace

And since my hours are 7:20 until 2:50, I won't be home to put him on the bus.  I have almost always managed to be home to send him off to school, so this is a big deal....mostly to me.  I know it will work out but I admit I have some guilt.  At least our schools are very close to home and Rob is available until his classes late in the afternoon.

So, goodbye summer 2013.  You gave me plenty of happy memories to get me through what promises to be a busy and challenging year!

The list gets longer

I love my church.  I really do.  But there are days when it is very difficult to go.

Wait, what?

Yes, today was one of those days.  And if you're a parent of a child with special needs, you will quickly understand where I am coming from.

It is the tradition at my church to celebrate the Seniors that are graduating.  They are all acolytes, i.e. they participate in the worship service in various functions.  They have been doing this since they were about the age Ian is now, and now they are moving on.

Since I've been attending this church for over 10 years now (really?), I've known these young adults since they were around 8 years old.  They are all wonderful in their own special ways, they are all heading to college and getting ready to step into the big wide world.  I'm happy for them and for their parents, believe me.  I'm not just saying it.  Three of their mothers are good friends of mine.

And yet, as I sat there during the presentation of the gifts and the sweet speeches, a part of me just ached.  While I was crying for the sweetness of this big moment in these young lives, I was also crying for yet another thing that my child will not be able to do.  The list just seems to get longer.  He is "graduating" from 5th grade this week, but his teacher felt, and I agreed, that he would not be able to handle the special ceremony that they will do at the school on Tuesday.  We're going to do a little celebration in his classroom, and I'm worried that he won't even be able to handle that.

We live in a very social world.  I never really thought much about it until Ian came into our lives.  If there was a party, we went.  Niece graduating from high school?  Sure, we'll come.  Not anymore.  Ian simply cannot handle it.  Even if we go to events with him, I can hardly enjoy them and he is generally unhappy.  So, you adjust.  But when those events are those which your child is expected to be part of, it gets trickier.  I posted on Facebook about Field Day and heard from several other Moms that agreed it was not something their children enjoyed.  Hard to imagine, isn't it?  But this is our world.

I hate Fragile X for many things, but I think the hardest thing is the joy of childhood that has been stolen from my child.  And, admittedly, the joy that has been stolen from me.

"Love is at the Heart of Healing"

The temperature inside our church yesterday must have been in the 80's thanks to a broken compressor in the air conditioning system.

I was tired and a bit stressed about the hand bell piece we would soon be performing.

And, to be brutally honest, I was not paying as much attention to the sermon as I should have been.  Then these words jumped out at me.

"Love is at the heart of healing."

Wow!  That got my attention.  I actually took out a piece of paper and wrote it down.

While those words can mean a lot of things to different people, for me it was all about Ian.  With the events of the last few weeks concerning the STX209 drug trial, it was a good reminder that all the drugs in the world can't give my sweet boy what I can.  Love.  Pure and simple, it is the most powerful medicine there is.

 It is a gift from a God that loves us.

I would be lying if I did not admit that there are times when I am angry at God.  Why my boy?  Why all of our children?  Is it a punishment?  Did this happen because we did bad things, or is it to strengthen us in some way?

Then I calm down and realize it just IS.

  I believe God gave us the curiosity and the great brains that we have to make things better, to find cures and treatments, to figure out ways to adjust to what we are given.  And if this treatment doesn't work, or if it does work and someone says we can't have it, then there will be those who fight those decisions.  And they will use the talents that they were given by God to get it done.

But, in the meantime, we will heal with love.

Ian has been off of STX209 for almost a month.  His behavior at school has been mostly great, he has been funny and loving and doing great things.  He wakes up every morning and goes to bed every night with a smile.  It's not perfect, but it's good.  Really good.

And his love is at the heart of healing me too.

Ian reaching for a bubble as a toddler

Reflections on the end of elementary school

 This was the beginning.

Walking to bus for first day of pre-K

On a cold January morning in 2005, right before his 3rd birthday, I sent my "baby" off to school.  On a bus.  By himself.  My husband was serving in Afghanistan and after that big yellow bus left I called my sister and I'm pretty sure I cried.

Ian did not.

He was a brave little trouper and although his first months in the school system were not easy for him, he has never given me a hard time about getting on the bus or going to school.

It was not the typical first day of school, and his elementary education has not been a typical one either.  It has been filled with meetings, IEPs, re-evaluations, behavior plans, visits to doctors and clinics.  He does not have a typical report card and he doesn't take typical tests.  He sees a speech therapist twice a week, and an OT checks in on him periodically.  He is in a "self contained" classroom; he cannot handle general education. Or the cafeteria.  Or assemblies.  Or field trips with his grade level.

 Every time I receive something about events for the fifth graders, events that I know Ian won't participate in, a little part of me gets very sad.  I often wonder, what if?  I try to imagine him as a "typical" kid, with friends to hang out with, bugging me to take him places, complaining about homework, thinking about his future.
But, thinking that way does not help anything, so I try my best to focus on how far he has come.

First day of 2005-2006

 And, he has come far.

First day of 2006-2007

And he will go far too.

First day of Kindergarten

 I'll never stop fighting for him.

First day of First Grade

I will never stop celebrating every single one of his accomplishments, no matter how small.

First day of Second Grade

I will never stop providing him with every opportunity to have fun and grow.

First day of Third Grade

 I will never stop laughing with him.

First day of Fourth Grade

I will adore him always.

First day of Fifth Grade

I am his Mom.  And I will continue to support him and do everything I did in elementary school when he goes to middle school in the Fall.

So, goodbye to elementary school.  It's been a great experience and we've both learned a lot!

What a good day for Ian!

It has been 10 days since Ian took his last dose in the STX209 drug trial.

Today was a wonderful day from beginning to end, and a good reminder that in spite of the events of the last few days life does go on.

Ian has been eating different foods for dinner four nights in a row.  In our little world, this is HUGE news.  The first night was pancakes.  The second night we had a power outage and in spite of all the wackiness that caused, he ate pork ribs....a first!  Last night it was hamburger and tonight it was mac 'n cheese.  This is something that we have struggled with for years, and now, of all times, it is finally happening!

Ian struggling with his dinner two years ago

Our weather today was rainy and I was wondering what we would do all day.  We did a trip to Target, and he was good as gold.  I let him use a Target gift card to buy his DVD and he handed it to the cashier and said thank you when she returned it.  He even kept the DVD in the bag all the way to the car.  Wow!

Ian at Target a few weeks ago

He ate a good lunch, never said "shut up" or "stupid" once (the words that have been vexing us off and on for months), hung out with me in his room while I went through his clothes, joked with me while we watched Sponge Bob, and did a very good imitation of Plankton's evil laugh.  He was a joy all day long!

I hope this helps the families that will have to wean their children off  STX209.  Of course we were not on  it for very long so the impact is less for us.  But our kids are still OUR KIDS no matter what medicine they are on.  We may be pleasantly surprised by what they can do when they have to stop.

At least, that's what I'm hoping and praying for.

 

The End of STX209 for Us....And Now Everyone Else

I cannot say that I am liking the year 2013 very much.

I'm not superstitious about the number 13, but I'm starting to wonder if I should be.  We have not had much luck with anything this year so far.

Last week we finished up at Duke.  It was our sixth visit since February 5th.  Our trips were mostly great.  We got to spend time with my sister and brother-in-law in Chapel Hill.  Ian was a good traveler and after the first visit to the clinic, he was a good patient.  We LOVED the staff.  Every single one of them cared about Ian and his future.  Ian got more experience with parking decks and elevators and food courts and navigating large, unfamiliar buildings.  And last week we stayed at the hotel they provided, and that was another good experience for him that we had not had in a few years.

Ian got his own big bed at the hotel

Heading to our room at the clinic after lunch

Part of the Duke Hospital complex

But, on May 3rd, we found out Ian would not be participating in the open label extension after the study was over.  We had been told there was a good chance he wouldn't, but we went ahead with the study and hoped for the best.  I was, naturally, disappointed.  But, since it seemed like the study was going so well, I just kept the happy thought that the drug would be approved soon in my head and kept on.

Until yesterday.

It was announced that ALL the families that had children in the open label extension were going to be cut off from the medication in a couple of weeks due to financial problems with Seaside, the drug company that makes STX209.

This is a huge disappointment for the entire Fragile X community.  The Facebook posts and blog posts I read last night were heartbreaking.  One family found out on their son's birthday.  Another had been on it for 3 1/2 years and saw their son blossom and now, well, who knows?

It's all about money, and that will make a lot of people angry.  It makes me angry.  When you think about the way money is wasted on so many other things, it just kills me that something that improves life in such an amazing way is going away.

Or is it?

It's still early and I'm sure there will be more information coming in the days ahead.  And, this is a dedicated and hard-fighting group.  I know they will not give up.  The fund raising events will continue, the trips to Congress will go on.  There are other drug studies in the works and participation will continue.

So, I'm asking for your prayers.  And a few dollars wouldn't hurt either.  The National Fragile X Foundation does so much for us, so if you feel moved to do something concrete about this, please make a donation to them.  Or, the next time that I post a link to write a Member of Congress, please take a minute and do it.

I was pretty good about not crying about this until a few minutes ago when I read some of the responses to my Facebook post from last night.  We are blessed with so much loving support.  We are on a prayer list in Kentucky (thanks Jenny Beth!) and at least one of our friends is spreading the word on their Facebook pages.

We are down today, but not for long.

And 2013, I'm not going to let you make me superstitious!

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.

An up and down kind of week

Our adventure with STX209 continues.

Since my last post on Monday, Ian has had some rough times at school and at home.  On Monday and Tuesday he came home with only 5 out of 6 smiley faces, and the teacher noted that there seemed to be more anxiety than there had been in previous weeks.

But there have also been more words, and more speech that makes sense.

On Tuesday night, I was trying to get him to turn on his humidifier at bedtime and he flatly refused.  What?  No, no, you have to do it.  Well, he did and then he burst into tears.

What a mean mommy!

I felt terrible because he rarely cries.  Who knows what the medications are doing to his hormones?  Also, he is 11 and the lovely puberty years are looming.  He finally settled down and went to sleep.

On Wednesday my usually happy morning guy was a grump.  During his dressing routine he screamed "Shut up!" at me and I scolded him and turned off his beloved PBS Kids.  He turned it around before he went to school, but came home with a very bad report.  Computer time had been taken away from him twice and he had actually said Shut Up 21 times.

Sigh.

When he got home, iPad privileges were suspended until he did some tasks to earn them back.  It's amazing how sweet he can be when he wants the iPad back!

Then, after dinner, the house was really hot.  I checked the thermostat (which is the kind you turn up and down on a dial) and it was at full blast!  The only one in the house who could have done it would have been Ian.  Weird!  Of course we asked him, but got no real answer as usual.  We told him not to touch it anymore.  But, who knows?  Maybe he thought since he had to turn on the humidifier, he should turn on the thermostat?  Not sure if it's a coincidence or not.

 I'm starting to wonder if we're going to have to baby proof the house for an 11 year old.  As a toddler, when most children his age were getting into trouble and making messes, he was an incredibly easy child.  We did baby proof then, of course, but he was just so NOT curious.  I can only recall one time when he got chocolate candy on a white chair.  (By the way, if you're having a hard time getting pregnant, just order some expensive furniture with white upholstery.  Just saying.)  We flipped the cushion and moved on.

Ian and the chair he got messy

Thursday was, thankfully, a better day.  Ian's class went on a field trip to a deli for lunch.  He behaved, ate his meal, and had fun on the bus.  He did well the whole day until the very end when he hit two of his classmates.  But, we dealt with that when he got home (apology notes) and he had a good afternoon and evening.  His daddy gave him a bath and when I was tucking him in he asked me for "Beach."  This is when we turn on his sound machine with the ocean sounds.  As I was doing that, he pointed to the wall behind me and said, "That's the beach."  It took me a second to catch on.  On that wall are two paintings my Grandfather did of beaches in Kauai.  I've never seen Ian show any interest in any of the  pictures we have around the house!  Loved that he made that connection.

My Grandfather's beach paintings

So, another week in the clinical drug trial is winding up.  Our next visit was moved up to next Tuesday, March 26.  It will be interesting to see what the next few days bring.

Duke Visit March 15

Our second study visit is done!

We drove down last Thursday night.  It had been a stressful couple of days around here.  A large tree fell in the backyard of one rental property, and on Wednesday night a plumbing problem developed at the other one.  I had to jump up on Thursday morning and find a plumber willing to crawl into a tight crawl space to fix a busted pipe while Rob and Ashby were taking a chainsaw to the tree.  Thanks to Kelleher, I got the plumbing issue resolved and got home in time to get Ian off the bus and we got on the road.

Need to give a shout out here to our hosts in Chapel Hill!  My sister Mary and brother-in-law, Jim, have been putting us up for the appointments.  Although the study would provide a hotel room, it is so much easier to stay with family.  Mary has been spoiling me with wonderful dinners and delicious cocktails upon our arrival, which is usually around 6.  Ian loves chasing the cats around and watching them come and go through the various cat doors.  He feels comfortable in the house and always sleeps well.

Comfy and cozy at Mary and Jim's

The next morning we had to get up and going early because our appointment was at 8:30.  It all went pretty smoothly until I couldn't find my car keys, prompting a little bit of panic on my part.  But, they turned up and we got into the garage at Duke by about 8:25.  As we came in, the attendant gave me a ticket with a big smile and asked if we were going to the clinic.  When I said yes, he said he hoped it went well and that we had a great day.  That was such a nice way to start our visit, especially since Ian had decided that he had to go to the bathroom RIGHT NOW when we were about halfway there.  (Never mind that he wouldn't go before we left Mary's house.)  We found a decent parking spot and ran to the clinic and a bathroom.  Hurray!  No accident!

Min (or Ming, not exactly sure) was our nurse and she was wonderful.  She took us to our "usual" room to wait for Wan.  Her son was born the same week as Ian, and we had a good conversation about 5th grade and middle school.

When Wan came, we went over our medication logs from the packets.  She made me feel so good because she praised me on how well I did keeping records.  I know that means so much to these research people, so I did make a real effort to be meticulous and try to dose Ian at about the same time every day.

I had a few minutes to check email while they were doing some things, and I found one from Ian's teacher.  I had asked for her feedback so I could share it with the team at Duke.  She wrote a very positive email, and when I read it to Wan she started to cry!  She was so happy, then I started to cry.  She excused herself and went and got Min and another nurse, Kimberly, and told them the whole story about getting Ian into the study at the last minute and the positive changes that were happening.  It was such an amazing moment, I'll never forget it.  Ever.

Back to the more basic stuff.  We had dosed Ian after arriving, around 9:20.  Then they checked his vital signs.  After that we had to wait two hours to do the blood draw.  We had some time to go get breakfast in the Food Court.  We brought the iPad and Kindle and Ian patiently sat at a table while I got coffee and some breakfast for me at Seattle's Best.  The women working that counter were so nice, just above and beyond.  Even though it was noisy in there, Ian did pretty well.

Settling in to his spot to watch DVDs

After that, it was a lot of waiting around.  Wan had brought her DVD player again, and Ian alternated between the iPad and the movies.  I used the Kindle to keep myself occupied.  (Next time I'm taking some knitting or something.)  Dr. L came in and checked Ian over; he did much better this time.  When it came time for the blood draw, the first thing Stephanie said was, "There is something different going on here."  She said he seemed more engaged and had better eye contact.  And Ian was a SUPERSTAR for the blood draw.  We just sat him on the bed and kept him still and he even WATCHED it this time.  He gave a couple little screams after it was over but that was it.

The view from the room at Duke Clinic

Our longest wait was after that.  It's very complicated with the drug packets.  They have to be brought in on an overnight service, then run through the pharmacy.  We had to wait over an hour for them after the blood draw, but it was okay.  We made arrangements for our next visit, and then we were on our way.

Ian's binder

As we headed to the garage, Ian seemed to be walking with a lot more confidence.  He knows his way around now, and overall the anxiety level is way down.  We got settled in the car and had a nice farewell from another parking attendant on our way out.

Duke Hospital, part of the huge medical complex

Our drive home was fairly uneventful.  We stopped in South Hill for a late lunch and we got back into the River City around 4:30 before the traffic got too crazy.

Back in Richmond!

These visits, in spite of all the sitting around, are kind of exhausting.  But, at the same time, they give me so much hope and the people are so wonderful.  I am so thankful for this opportunity for Ian and hope that this will help all the children affected by FX in the future.

Done with Week 1

The outside label on the medication pack.

Just had a call from Duke.  We get a call every 4 days while Ian is in the medication phase of the study, just to check on him.

Ever wonder what dosing is like for a clinical drug trial?  I never really thought much about it, but it's not your typical pills in a bottle scenario.






First of all, the pills come in a special pack.  There are 3 doses a day and they are labelled morning, midday and evening.

The doses have to be at least 3 hours apart.

The times they are given have to be logged in the pack.

That has to be initialed by the person giving the dose.

The inside of the pack with the log

So, how is Ian doing with all this?  It's hard to say.  Overall, I don't really see any changes.  His appetite, sleep and general attitude seem about the same.  However.....

There are moments when I see a more playful and engaged child.  They are brief and they may just be coincidence.  There is a 25% chance he is on the placebo.  But, there is a 75% chance he is not.  

The people at Duke still don't know for sure what our status is when we are done with the study.  Seaside apparently did not expect the participants to stay in the study at the rate they did, and running a study like this is expensive.  But, the feeling seems to be that the study has gone so well that they may be directing their attention (and money) toward FDA approval and getting the drug to market.  After all, that is what it is all about anyway, right?

So, we will continue the study.  Our next visit to Duke is next Friday.  And we will continue to hope and pray that this is going to help provide Ian with the help he needs.

It takes a village

Yesterday I was reminded how many people are involved in Ian's life, and how important they are to me as well as him.

Since we had a two hour delay, I was dressed when Ian's bus came to pick him up.  Ms. Vivian and Ms. Julie are the driver and aide.  We've known them for several years, and they are a great team.  They care so much for the kids that are put in their care every day.  I went out to say hello (and to make sure Ian didn't jump in the big puddle in the ditch!) and they told me how well Ian was doing lately.  There had been problems earlier in the year, but they adjusted things and made it work for him.  I am so grateful for their care and attention.

Ian on the bus

Ian had a doctor's appointment yesterday afternoon that made it necessary for me to pick him up from school.  One of the classroom aides, Mrs. Hines, brought him up to the office.  This woman is fantastic.  She loves Ian and puts up with a lot from him since she has to make him do a lot of his work.  A few weeks ago Ian was very bad and hit her.  I made him type an apology note.  Even though it is part of her job, I knew it had to hurt her feelings.  Goodness knows, she doesn't make much money.  She is one of those amazing people who does the work because she loves the children.  I gave her a hug as we were leaving and told her I appreciate every thing she does for Ian.  I hope that helps the next time he misbehaves!

Ian with Mrs. Hines on a field trip

Our appointment was with Dr. M. who does Ian's medications.  We have a routine at this office where Ian will get a magazine from the rack while I sign him in.  He then takes the magazine out into a hallway area and waits.  Without fail, he has always picked up the Sports Illustrated magazines.  I don't know why, he just does.  And he has done this for years.  It is part of THE ROUTINE.  Yesterday, no Sports Illustrated.  And I had not brought the iPad.  And we were early and Dr. M. tends to run late.  I braced myself for trouble as I tried to get him to look at other magazines or the newspaper. (no, no, NO!)

Awesome.  Well, he handled it better than I expected, thank goodness.  I am so happy he is not a major tantrum thrower!

I am so happy we found Dr. M.  She is so sweet and smart, and she has true compassion.  She is not a Fragile X expert, but she has read everything I give her and has educated herself about it.  If I have a concern, she listens.  She explains what the meds do and don't do.  She is thoroughly professional.  Ian mainly just sits there as we talk, and yesterday he got kind of snippy when asked to get on the scale.  But, he tolerates the appointments and I know he likes Dr. M. is his own way.  Did I mention she is stunningly beautiful?  Seriously.  She is Indian and looks like a Disney princess.  Even at 7 months pregnant, she looks amazing.  I know my boy.  If she wasn't so pretty and sweet, things might be a lot different on these visits.

There are many other people who are part of our village.  Every day I give thanks for them all.

Snowy day and a schedule update

Today we had a snow day.
Last night it poured down rain.  I mean POURED.  I even was dreaming about Niagara Falls.  Then, it thundered and started to snow.  Now, after a couple of inches, the snow is letting up and the wind is picking up.  Being a mom who has experienced power outages before, I am charging up everything I can just in case the wind brings down the power lines.

I just received an email from Duke.  We have been set up for our next 4 visits, but still no news on the extension after we are done.  Still need lots of prayers for that!  In the meantime, we will continue on and hope for the best.

In, then out, then in again

This blog is about the STX209 clinical drug trial at Duke.

We've had some complications.

On Thursday, February 21, we received a call.  It's long and involved, but basically it came down to this....we would not be getting the drug in the open label after Ian's participation.  I was devastated.  One of the reasons we were interested in this study was because we were told that we would have the option of continuing the medication after the trial was over.  After all, it could be years until it's approved and it would be a shame to go through the study and discover that it worked great and then have to STOP.  To further complicate matters, a deadline of February 28 was thrown in there AND one of the key doctors was out of the country.   Our next visit had been scheduled for today, March 5, and Ian would begin the dosing on this visit.  After talking it over with Rob, I called Duke back and said no, we did not want to continue under these conditions.

And, that was that.  Or was it?

No, of course not.  Last Tuesday I got away for an evening up to Northern Virginia to see my sisters.  The next morning there were several missed calls from Duke on my cell, but I was busy and didn't get the message until I was on the road back to Richmond.  I'm driving down I-95 and talking to Duke again.  They were frantic to get hold of me, there was STILL A CHANCE!  The doctor who was out of the country was lobbying hard for us to be included in the open label, at least for a year, but we had to get Ian on the medication (or placebo) by the NEXT DAY!  So, I told them yes, we would be there, and then I pulled into a rest stop to make some calls.

I got home in time to get Ian off the bus, but I was too tired to make the drive to Chapel Hill so I decided we would just do a day trip.  And everything was fine until I went down the basement steps to help Ashby with something....

and missed a step....

and sprained both my ankles!!

What I woke up to Thursday morning!

Genius!

So, it worked out that Ashby drove us and I limped around with wrapped up feet and crutches and a wheelchair at Duke clinic.  They set me up in a hospital recliner and I pretty much stayed in it the entire time we were there.  Lunch and ice were brought to me, and I answered questions and listened to directions concerning the dosing.  Ian was a good boy, even during the blood draw.  Ashby got a chance to walk over to Cameron Indoor and see the students camped out for tickets for the Miami game.  We got it done.

At 2:45 p.m., Ian had his first dose.  We were in.

Ian loved Wan and her collection of DVDs!

However, we still don't know if we are.  In fact, we don't even have another appointment set up.  I had a follow up call from Wan yesterday, and she said they were meeting today and would let us know.

Now the question is, will we continue, even if we don't get the open label?  I think we will.  We've gone this far, and when the drug does become available we will have a better idea what to expect.  Unless we are on the placebo (chances are 1 in 4 that we are), then I guess we're just helping out with the study data.   Five days into this I don't see any real changes in Ian, but he certainly isn't any worse off than he was before.

So, we will wait and see what happens....and watch those tricky steps!