The Shocking End of the Drug Trial

It's a sad day in the Fragile X world today.

Yesterday afternoon, I saw something on Facebook.  Something that shook me to my core.   So I did what any normal person does when shaken to their core.

I called my parents.

Later I got an email from the doctor, confirming the news I'd read online.

"Seaside Therapeutics has terminated the extension study for arbaclofen (STX209) in which you are currently participating, as of today."

And even though we were warned this could happen, I am shocked.   We've been in this study for 21 months now.  A lot of families I know have been on the medication for years.  I knew it could happen, but I really believed it would not.

I was concerned that the trial could be extended, and not approved by next spring, as had been projected.  I was concerned that I'd have to continue making these trips to Chicago that were starting to wear on us.

I wasn't concerned they'd terminate the trial.

Terminate.  What a terrible word.  Once when I was in high school and an early, inexperienced driver, I had to come up to the Twin Cities to pick up my mom at the airport.  It was easy to drive down the highway and follow the signs to the airport itself, but when I got closer, suddenly the choices weren't as obvious.  I had to decide whether to take an exit to the "TERMINAL" or go back on the highway.  I didn't know for sure what the TERMINAL was, but it didn't sound like a place I wanted to go.  It sounded very bad.  Very bad and very final.  (Okay, I was in high school, maybe I should have known what a terminal was, but I was from a small town and had never driven to the international airport before.  I panicked.)  So I went back to the highway.

This was before the Star Trek technology of cell phones, so my mom had to just stand there and wait and hope I'd figure out how to get there eventually, and I had to figure out for myself that the TERMINAL was actually the airport.

Getting the news yesterday felt a little like when we got the Fragile X diagnosis . I knew the boys were being tested for some genetic abnormalities, but I truly believed that nothing would be found.  Of course they wouldn't find anything, because that's logical, and the logical almost always happens, right?

This is what thinking positively gets you.  Blown away, when the positive thing doesn't work out.

How many times have we driven to Chicago?  I think we are at 13, in 21 months.

It's hard not to feel like it was all for nothing.  A lot of parents are grieving.  Sad.  Disappointed. Angry.  Heartbroken.  Devastated.  Crushed.  My word was crushed.  Because even though we hadn't experienced the miracles that other families were reporting, the fact that other kids with Fragile X DID show life-alerting responses meant that this drug was hope for us all.

For years now I've been hearing about a cure for Fragile X.  A treatment that eliminates the symptoms.  Hearing that reversing intellectual disability, once something of science fiction, is entirely possible, and within my boys' lifetimes.

This feels like a pinprick into our balloon of hope.  Not just a slow leak.

I know there are other medications being studied that show lots of promise.  I know this was just one of many.  It's just that it takes SO LONG to get a medication approved by the FDA in the US, and this one was SO CLOSE.  And a lifetime is so short, it seems.

A lot of us whose children are in the study keep our families and friends (and ourselves) updated with blogs.  Here are some of the posts others have written about their feelings on the termination of the Arbaclofen study.

Fragile X: One Day at a Time

It's Who I Am

Basically FX

The Reluctant Adventurer

It's hard to get up and be strong today, and continue the fight.  My spirit feels crushed.  We were given a torchlight of hope with STX209, and yesterday it was ripped from our hands and doused.

Brief Thoughts, Briefly

I have things pop into my head daily that I'd like to write about.  Thoughts I'd like to pursue thoroughly.  But I just don't have the uninterrupted time.  So I'm going to touch a few of the dozen or so things I thought about writing about in the past week or so, here.

1.  Isn't it amazing how quickly after the Boston Marathon bombings that the suspects were identified and captured (or killed)?  5 days.  Impossible without modern social technology, I'm sure.  It was just one more example of how print media is going to be completely unable to keep up with news.  Magazines and newspapers are going to have to stick to human interest stories and avoid anything timely, because by the time they can print it and disperse it, it'll be history.

2.  And another thought about the Boston Marathon bombing - I couldn't help feeling special sympathy for those who were injured and will suffer lifelong disabilities.  I'm going to be daring and say, I felt more sympathy for them than even for the families of those who died.  Of course it's tragic to have your child's life cut short by something like this.  Something so completely avoidable and unnecessary.

The reason is because I think the media gives so much attention to the deceased, and not enough to the disabled.  The ones I really feel for are the ones who survived, whose lives will go on, but not at all in the way they had been living up until last Monday.  Those who lost limbs, or whose limbs won't work right even after they recover, and especially - those with brain injuries.  Those who might recover visibly, but whose minds will never work the same again.  I'm absolutely positive this comes from my personal experience raising children with brains that don't work right - but those are the people I feel the most strongly for.  And they get virtually no media attention.

Not that they want it.  Not that I think they should get it.  They probably don't.  But the way the media honors and dignifies those who died - I wish they'd show similar respect to those who will live differently, and probably with a lot more difficulty, now.  They are telling us what to think, by what they tell us - and I feel like (and feel free to disagree with me, but like I said, I know this comes directly from my experience with my kids) they are telling us that those who died and their families suffered the most - they are at the top of the suffering pile - and anyone who survived should just be grateful they survived and they aren't at the top of that pile.  And I'm sure they, and their families, are grateful.  But I can't help but feel for the mothers of the people whose bodies and brains were permanently broken, and who will live, but with challenges and trials they never dreamed they'd encounter, and that will never get the attention of any news media outlet.

That's enough of that.  Please don't send me hate comments for not respecting the dead.  I do respect them, and their families.  I just wish there was more respect and sympathy, and lasting sympathy, for the life changing injuries, and less of a "they are just fine because they survived" attitude.

I don't know if I explained that well and I'm not going to review it before sending this out, so please try to understand that I'm not trying to minimize the pain of those who lost children.

3.  We just returned from a trip to Chicago for an Arbaclofen, STX209 drug trial.  Here's a cute but blurry iPhone photo of the boys in the car on the way home yesterday.

The trip was as uneventful as you'd want a roadtrip to be.  A little bit of weather to deal with but mostly we left a spring snowstorm behind in the Twin Cities, and we arrived in Chicago just as the rain and flooding were starting to dry up.  It wasn't pretty, but it wasn't terrible.

It was a little alarming to hear about how the company sponsoring the drug trial is having money issues, and there is a possibility this trial will end, without being approved by the FDA.  Hopefully if they have to cancel trials, they'll cancel some other drug trial that isn't as close to being completed as this one.  Phase 3 of this trial (the one the boys participated in) ends in June, and then it's just a matter of paperwork and business stuff, and it could be approved and on the market by spring of 2014.  If they can keep it going.  We haven't been reimbursed for the trip we took in January yet, and now we just added another one to their bill.

I'd hate for us to stop having to take the medicine, and I'd hate for all our travels and all those blood tests and urine samples and stress to have been for nothing.  I'd hate for this medication to be delayed in getting to other people with Fragile X.

4.  We had talked about going to Canton, IL after our appointment on Friday to attend the 10th Annual Walk for Fragile X put on by Holly Roos, but we couldn't work out the travel and hotel details in a way we thought would work for the boys.  We are a little high-maintenance, and while AJ and Zack have become really excellent little travelers, there are still certain things that need to be in place for it to work.  And it ended up being a puzzle I just couldn't complete.

There's also the fact that after a drive to Chicago and an appointment at Rush, we are all pretty beat.  What they needed after that was rest, not more anxiety-inducing activities.  I shouldn't have tried to combine the trips.  If we could have made Canton it's own trip, all by itself, it would have worked better.

I have seen all the pictures online from the Walk and the gatherings before and after, and while it looks so fun, it also looks impossible.  I could have gotten Zack through some of that, but he would never have tolerated the amount of socializing I see the other Fragile X kids participating in.  AJ could have done it, but he'd have been outrageously stressed out.  I don't know how they all did it.

How to go on a roadtrip, by AJ and Zack

We recently made our 7000th trip to Chicago, for a follow up appointment for the STX209 drug trial the boys are participating in.  We have a good routine in place now to assure success for these road trips, but Zack and AJ would like to throw in a few suggestions of their own.

1.   Immediately after your seat belt is buckled, start asking "Hotel?" before your dad even backs the car out of the driveway.  Say it at least a dozen times an hour.  (Saying "Hotel?" is the Fragile X way of saying "Are we there yet?")

2.   Eat enough Doritos and drink enough cran-apple juice to vomit a bright, staining red across the car.

3.   (Zack's contribution) if you poop in your pants, pull it out and rub it all around the back of the car, your clothes and hair, and the iPad.  Work fast to get as much done as possible before someone looks back at you and screams bloody murder.

4.   If possible, hold off on numbers 2 and 3 until you've reached a stretch of highway where there are very few gas stations.

5.   When you get to the hotel, don't wait in the lobby for your dad to complete the check in process; you've been here before, you know your way around.  Let mom chase you to the elevators (she needs to get her blood flowing from that long drive, she'll thank you for it) and push buttons.  Any buttons you can find.  All buttons will take you someplace fun.

6.   The moment you enter your hotel room, begin running around, bouncing on the beds, and stripping off all your clothes to get ready to go swimming.  Even if dad hasn't brought the suitcase up from the car yet, you can be prepared by getting naked right away.

7.   Less than 10 minutes after getting in the pool, get out, grab a towel to drag behind you, and start for the exit.  Don't worry, someone is bound to follow you.  Shout out "Bye swimming!"

8.   Before bedtime, grind up as many chips and cereal on the beds as you can.  Spread the food around and then roll on it. 

9.   If you can't fall asleep and you get frustrated and overtired, throw all the pillows and blankets on the floor and kick them around, while screaming.  Nobody else wants to rest, either, they won't mind.

10. If you wake up in the hotel room and it's dark and no one else is up, a good way to entertain yourself is to sing.  Preferrably something by Yo Gabba Gabba, with a bunch of repetitive yelling.  If you get bored with that, recite all the lines to the Dora episode where Benny turns into a big potato.  That's mom's favorite one, so she will love waking up to it.

That's all they have for now, I'm sure they will add to the list in the future.

Pretend play tied to toilet training readiness?

Well, it's been a heck of a week! Here's, how it all went down, briefly:

~ Drove to Chicago Tuesday. Seemed like a longer drive than usual. I wonder if Chicago moved and is now even further away somehow.

~ Went to Rush University Medical Center for our drug trial check up. This was the yearly "long" visit - meaning blood and urine tests, an hour each with a psychologist (the boys, not Mark and I, although I'm fairly sure he and I need psychological help too), the physical exam, and 4 questionnaires. It took hours to get a urine sample from Zack. It took numerous pokes in two arms to get a blood sample from AJ. All in all, a 6-hour appointment. We left dazed and confused, just in time for Chicago rush hour. Good times.

~ Zack acted so strange the next morning. I wasn't positive he was okay, and therefore was so looking forward to the next 8 hours in the car with a kid who gags when I offer him chocolate milk.

~ Zack turned out to be okay. He was just super exhausted to the point of tears. The doctor appointment was really hard on him.

He eats some chicken, enjoys the free wifi at McDonalds, and begins to act more like the kid we know and love.

While I'm not convinced they got accurate testing results out of the boys (IQ tests right after stressing them both to the shrieking point with giving blood and urine samples? Come on!), the psychologist did have some interesting things to say. After he was through, he came out to the waiting room to chat with us. He was pointing out on a spreadsheet the different developmental stages, and where he thinks the boys are at. He commented that Zack appeared to be in the midst of the "terrible twos." Zack was wandering around the waiting room, whining and screaming at the time.

I don't know. I think most kids, almost regardless of age, would have complained about the fact that we'd been working to get him to pee in a cup for hours, by then.
He also talked about one part of the tests he'd performed, where he holds up an empty toilet paper roll to one eye and peers through it. He showed us how it's done there in the waiting room.

"Look, AJ. I see you!"

Then he handed the toilet paper roll to AJ. "You look through it, AJ."

First AJ handed it to me. I handed it back to him. "No, you look through it."

AJ obligingly put the toilet paper roll up to his face, directly between his eyes, and then handed it back to the doctor.

The doctor then explained that this is a good test of the developmental skill of imaginative play. If a kid holds a toilet paper roll up and looks through it, he is showing that he understands how to pretend. If, even after seeing someone else do it, he doesn't put the roll up to one eye and look through it, he doesn't understand really how to pretend. And the psychologist said that this developmental skill is tied to potty training. If a child isn't capable of pretend play, he probably isn't ready to toilet train.

He demonstrated it further by showing the boys a telephone handle - just the ear/mouth piece of one of those old style phones. Not a cordless, and certainly not a cell phone. He pretended to talk on the phone and handed it to Zack. Zack of course was having nothing to do with it. He had had it with all of us. AJ wouldn't do it, either.

I didn't mention that AJ has pretend conversations on our cordless phone all the time. He can talk to real people on the phone, too. He was born in 2005. He probably had no idea what that big, clunky old fashioned phone handle was.

So this past weekend, I happened to use the last paper towel on the roll. I took it in to the living room where AJ was watching You Tube on the iPad. I held it up to my eye. "Look AJ! I see you!"

I handed it over to him. AJ promptly held it up to his ear. "Hello? Um, ok. Goodbye!"

This Week's Adventures

I can't believe almost a week has gone by since I was last here!  Sorry about that.

I thought about it yesterday in the car, on our way back from Chicago.  I'm going to make up for it by posting something every single day next week.  Even if it's only a picture or a quote.  Every day there will be something new out here.

So yes, we just returned from a trip to see Dr. Berry Kravis at RUSH for the STX209 trial extension.  Getting ready to go on this trip required a bit more prep than the others did - and it had nothing to do with the trial or the boys.  It was the car.

My van has 151-something thousand miles on it and I intend to bring it to 300.  It's been a real trooper, taking us to Grandma & Grandpa's house dozens of times through the years, to Madison to visit the Waisman Center a couple of times, and to Chicago (825 miles or so, round trip) five times in the past six months.

So lately, once in awhile, my old, trusty van gets close to overheating, without actually overheating.  The gage goes up, very close to the H, and then goes back down to normal.

A few days before our trip, however, it ventured all the way up to the H and lit up, and gently dinged.  A very polite warning that the engine is way too warm and the car might blow up or something.

Luckily I had an oil change appointment on Tuesday and I told Joe, our faithful car fixer guy, about the red H and the overheating.  He looked very worried.  He knew we were due to drive to Chicago this week.

Sure enough, he came back into the waiting room after hoisting the van up to check out it's underparts and said it was bad, very very bad.  He used other car-part terms and motor fixer-mumbo jumbo words I can't recall.  What I remember is the way he looked sad, and shook his head, and said I should talk to Mark about whether it's even worth fixing.

Sheesh.

I should mention that we love Joe and we trust him completely.

Of course we're going to fix my van.  But first things first - how were we going to get to Chicago?  Mark's car is quite a bit older and has quite a few more miles on it than mine does - we didn't feel comfortable piling the kids in it and driving across a couple of states.

So, as it turns out, my parents are at their winter place in Galveston at the moment.  And my dad's car is waiting patiently in their garage for someone to come drive it.

I'm just that driver.

It just required a trip to my parents' house to get the car - a 180 mile round trip - and luckily my father in law came to the rescue earlier this week, and drove me there.  Thank God for close and supportive family!

So the five of us drove 825 miles to Chicago and back this week, in my dad's considerably-smaller-than-a-minivan but functional-and-trustworthy car.  It was a cozy, tight trip but we got through it with no bigger trouble than a few cramped, sore legs.

More on the trial and how things are going with the boys (great, by the way), later.  Have to get ready to go have coffee with some Fragile X parent friends!

Reflecting on the STX209 Drug Trial

Well, the trial has ended.  And I STILL can't answer that 64 million dollar question: 

Were they on it, or weren't they?

We won't know what's been in these boxes until the end of the whole trial. When the drug is approved and ready for the market, we'll finally find out. So, estimates are, sometime in early 2014.  We won't know for around 2 1/2 years!

So now we start the extension.  The part where we give them the medication, beginning at a small dose and working our way up.

At our last appointment they staff did some testing to measure the boys' current cognitive abilities.  They were basically IQ tests. I hate IQ tests.  They don't measure what a person can do, they measure what a person can't do.  They are meant to separate the "averagely intelligent" from the "brilliant."  They don't work on the "horse of a different color."  (okay maybe not, but that's just how I feel.  My boys have tons of capabilities that those tests don't come near measuring.  I get a little testy when we talk about IQ tests.  Pun intended.)

But in this case, I welcomed the tests with wide open arms, because they expect the STX209 drug may help long term with cognitive abilities, and they want to have a clear view of where the boys are at right now, before they start the extension.  I also welcome it because I trust that the drug study will use methods of testing that will show more clearly what my boys are capable of, than a test that was created for "typical" children.

So I say, yes, measure away.

The doctors and assistants and staff at RUSH University are utterly wonderful.  They take such good care of us.  They make the process and procedures of a drug trial much less difficult and are always considerate of our special situation.  Probably because every one of their patients has a special situation.  They are quite familiar with those who are a "horse of a different color."

So now that the trial is over, I made a list of Pros and Cons to help me organize my thoughts on the experience.

PROS

• The boys have become excellent little travelers.  There have been lots of good experiences and benefits from the traveling aspect.
• I get to see people I mostly only know online at the clinic.  This last visit I saw Holly, and the visit before this one I saw Kristie (okay I barely saw Kristie, but Aliza saw her - that counts, right?)
• Like I mentioned above, the doctors and staff at RUSH are all fantastic, but it's especially great to be in a study with Dr. Elizabeth Berry-Kravis.  To be on her radar is to make sure you are in the right place at the right time, when the best treatments become available.
• Obviously, there is the benefit of helping a good medication get onto the market and available to people with autism and Fragile X.
• We are getting a head start on a medication that, long term, will help with mental abilities. By the time it's available through regular prescription, the boys will have already been on it for 2 years.

CONS

• The expense.  You can use your imagination and figure out what we've spent on hotels, gas, food, and incidentals on 5 trips to Chicago and back.  And oh, have I mentioned the toll roads?  Once you hit Illinois, there are 3 or 4 tolls to pay to drive there.  They range from 30 cents to $1.60, but starting in January they are raising rates to either $1.50 or $3!  Reimbursement is something we've talked about a lot, and heard lots of encouraging words, but we have yet to see any reimbursement.  We aren't doing this for the compensation, but we aren't independently wealthy either, and this is taking a huge toll on our family economy.
• Leaving Mark and Aliza back at home.  Splitting up the family so often is hard on all of us, but it's hardest on Aliza.  Her teacher told me this morning that Aliza mentioned she was missing me this week, and I found out she had a little stress breakdown in the cafeteria yesterday.  I know Mark does his best to make it easier for her.  But he's not The Momma.
• General hassle and inconvenience  - the time the boys have to take off school, and Mark has to take off work.

I guess this is one of those situations in life where I have remind myself to back up, and to see the whole forest.  I have to work to ignore each individual tree.  I've got to keep my eye on the prize - which would be, two boys who are intellectually able to be self-sufficient and happy.  That's what we hope this medication could do.  And if it does that, it's absolutely priceless.

I'm pretty sure we're on the placebo.

We had our third clinic visit this past Monday and four weeks into the trial, we still don't see many changes.  They are both talking a little bit more, but there are still huge anxiety issues with both boys.  And when we told the doctor that, she said well, maybe they are on the placebo, or a very low dose.

Which made me think that SHE expected to see some changes by now, too.

We have the last two appointments all scheduled, the last of which is in mid-December, and she said that then we can get them into the extention and then we'll KNOW they are on the drug and we can see what dosage will work for them.

Which makes me think she wants us to definitely do the extension.

This is Dr. Elizabeth Berry-Kravis, by the way, a world-renowned Fragile X pediatric neurologist, and a superstar in the Fragile X community.  If she wants us to try the extension, we are going to try the extension.

If she told me it might help for me to jump through a hoop of fire, I'd probably try it.

We have a nice long break now before our next clinic visit.  We don't have to go back to Chicago for a month.  So we'll spend this month trying to stay in a comfortable, predictable, routine of school, therapy, Little Einsteins, and occasional trips to the mall and Target.  We'll try to keep the anxiety level as low as possible.

We'll keep taking our trial meds, and we'll keep hoping for great things.

This past weekend in Chicago we tried to make it into a family mini-vacation.

We decided a couple of weeks ago that we wanted to take the kids to the Shedd Aquarium.  I emailed them and explained why we were going to be in town, told them about Fragile X and autism and how it affects the boys, and asked if they had any ideas or suggestions of ways we could make this a successful, fun outing for the kids.  Their reply was basically a form email they send to anyone who asks about how to make a trip to the Shedd successful and fun.  I was kind of disappointed in that.

But we got there around 20 minutes before it opened, and were the third family in line.  By the time it opened, there were probably 10 families in line behind us.

Well, I waited in line, while Mark and the kids bounced, skipped, jumped, and ran around in circles.

"We know it cost $147 for all of us to come in here, but we're tired of the aquarium, can we go back to the hotel and watch videos now?

And the Shedd Aquarium was a very positive experience for all of us.  For the first hour or so it wasn't crowded at all, so we could kind of let the boys run around and play on benches and even lay on the floor a little, if they wanted to.  They even showed some interest in some of the exhibits.  AJ and Aliza watched the Alligator snapping turtle with awe.  Heck, so did I.

I didn't take this one - it's from here.

Being regulars at the Minnesota Zoo, we are well acquainted with dolphins but we aren't used to seeing Belugas, and thought they were fascinating.

We stopped for lunch and played with the iPad, and then we took a big leap out of our comfort zone, and took the kids to see "Dora and Diego's 4D Adventure Catch that Robot Butterfly!"

You know what 4D is, right?  It means you will feel and smell the movie as well as having it appear to jump off the screen and into your lap.

We could smell the rainforest.  The chairs rumbled and we got wet and windblown.  It was all a bit much for AJ and he started to cry just a few minutes into the show, so he and I left and waited outside for the others.

It was one too many "D"s for him, I guess.

After we left the aquarium it occurred to me that the biggest and greatest American Girl store in the whole world is in downtown Chicago, just a couple of miles from where we were at that very moment.  I couldn't resist it.  I talked Mark into letting Aliza and I spend a little time there.

She floated through that store on a cloud.  Number nine, I think.

Then later in the afternoon we took the kids back to the hotel pool, where they just so happen to have a couple of flatscreen TVs mounted on the wall, that just so happened to have the Vikings/Packers football game on them.  There was no one else at the pool.  So for a little while, I got to kick back in the jacuzzi and watch football.  Mark said "don't get used to this."

I said, "Too late.  I'm used to it."

I'm pricing jacuzzis on the internet right now.

Not Loving Chicago

I love how everyone says "oh, I just LOVE Chicago" when I tell them we've been spending a lot of time there.

I guess to LOVE it, you have to see more than the traffic on the expressway, parking lots, hotel rooms, and the medical center.

You also probably have to not travel with two small children with autism.  It's hard to enjoy your trip when you are constantly hyper-aware of your two little ones and the dangers all around, that they are completely oblivious to.

The level of hyper-vigilance we have to have with the boys is stressful and exhausting in a way I don't think many people get.  I keep thinking about that family in California that was in the news a few weeks ago, whose 8-year-old autistic son was lost in the woods.  (I wrote about it here.)  He'd been in the care of a foster parent or something (who obviously didn't watch him closely enough and lost him), having been taken away from his parents because they'd tied him to a post in their front yard.  They did that because they found themselves facing foreclosure and having to move out of their house quickly, and they had no one to watch their son.

I think I know exactly what they were thinking.  That child required the contant, focused attention of one person, 24/7.  The person watching him could not also pack and move things out of the house.  One entire person had to be 100% watching him and doing nothing else.

They wanted to keep him in the yard, where he could watch them coming and going from the car, and where they could see him.  Where he wasn't secluded or isolated, but was safe. 

Would it have been okay with Child Protective Services if they'd barricaded him in his bedroom, instead?

My boys require that same level of supervision.  I completely understand what would drive you to tie the child to something, just so you could have both hands free to do something else.  Let me tell you about the last time I thought about tying up one of the boys.

At the hotel we took the boys down to the lobby for the continental breakfast.  It wasn't that busy, but neither of them would sit.  My dad held onto AJ while I struggled to get Zack to stay at least next to our table.  He laid on the floor.  The breakfast was great - bagels, muffins, donuts, scrambled eggs, sausage, coffee, juice, and milk.  Some cereal.  The only thing there either boy might have eaten is the Fruit Loops, but under these stressful circumstances, in a strange place full of strangers, there was little hope of either of them eating anything.

Incidentally, we don't bring them there to eat.  We bring them there to try to get them used to being in a situation of eating in public.  We bring them, because they won't learn how to sit down in a restaurant and behave properly, if we keep isolating them.

But it's hard to eat when you never have more than one hand free.  AJ's decided he can sit, sort of, if he sits on my lap and I hold him there.  I can't butter my bagel.  Eggs keep falling off my fork because of AJ's struggling to get loose.  I have to time sips of coffee carefully to avoid sloshing it all over myself.

So maybe you can see why, in that hotel lobby, I briefly thought about how nice it would be if I could tie AJ to the chair next to me just for a few seconds, so I could let go of him and butter my bagel.

When we walk out to the car, I have to step up the supervision level because if I'm carrying things and maybe not holding both boys hands, they are just as likely to skip off in a different direction as they are to run toward the car.  Imagine walking out to your car in a crowded, busy parking lot with two 2-year-olds.  It would be nerve wracking, trying to keep them safe.  My two still have the unpredictability and impulsivity of 2-year-olds, only they are faster.

So maybe you can see why I breathe a little sigh of relief, when I can strap them both down in the carseats.  They can't get up and run off and I can look the other way without worrying about what they are doing.

During the course of this last trip, AJ mouthed and chewed on things (his shirt, his blanket, a pillow) so much he'd developed sores on both sides of his mouth.  One side looks infected.  I put Carmex on his lips all weekend, but he's kind of a mess.  Zack has been rubbing the collar of his shirt across his bottom lip so much that it bled.

At a rest area/oasis along the highway.  Chewing, chewing, always chewing....

Fighting over the computer in the hotel room.

No, we are not seeing a reduction of the anxiety behaviors yet.

Driving is nice because I know the boys are safely belted in and can't get into too much trouble, but driving 8 hours is also quite a drain, so by the time we get back home, it takes a couple of days before I can even begin to think about planning the next trip to Chicago.  Maybe after this weekend, I can begin to think about it.

And maybe on the next trip. we'll try to see something besides the hotel and the medical center, and we might develop an appreciation of the sites in Chicago.  As of right now, though, I don't LOVE Chicago.  I don't even really like it.