Author: Melissa

He’s got this new thing…

Melissa

so, this child has come up with some strange amusements over the years but this latest one takes the cake.

Monkey is, and I can’t believe I’m actually posting about this, playing with toys. T.O.Y.S. Toys. Not just toy versions of things he sees us or other people use (binoculars, power tools, etc.) but toys that are nothing more than…playthings. Child’s playthings…toys. That he uses as…toys, not as props in a script he has stored in his brain from some TV show/YouTube video/commercial.

So a good chunk of the population is going to look at us when we say this and smile nervously while looking for the nearest exit. We look a little wild-eyed intense in our amazement so it is a little freaky…but you…YOU know what I’m talking about! You know this is big time cool.

It started with Buzz, Buzz Lightyear. Monkey was watching a YouTube clip and he ran, grabbed Buzz, Buzz Lightyear from his room and then sat down with him to watch YouTube. It was so cute ((Of course, we are not allowed to let him know it was cute so we stood in the hall, peeking in at him one in a while, and looking at each other with eyes like saucers while we mouthed OHMYF*CKINGGOD! HEISSOCUTE! I KNOW! SOF*CKINGCUTE! at each other.)).

Then, he just waltzed into our living room and asked for help getting (Lightening) McQueen out of Mack ((OK, that sounds a little dirty, eh? Ha. Never mind, growing up now.)) like it wasn’t the first time he’d looked at the flipping thing since he opened it at Christmas ((Not that I am bitter or anything, but this was one of those toys that I tried finding locally and then ended up paying wayyyy to much for on Amazon because they figured out that people (ME, MOTHERHUMPERS) were googling madly and looking for this toy so they jacked the price up based on whatever crooked algorithm they use which resulted in people (ME, AGAIN, DIPWADS) paying twice MSRP. ZOMFG, Amazon, really?? OK, fine, maybe I am a little bitter. Still.)).

His latest foray into the fabulous world of toys was with his remote control car. This car is hecka cool, when it  runs into something it flips over and keeps going…it’s a reversible car! Monkey started out terrified of it, then he was mildly concerned if something happened to disturb the layer of dust on it and then he simply forgot it existed…until this afternoon. This afternoon, he grabbed it from the shelf it had been parked on for two years, put it on the floor and proceeded to drive it around his room. When he caught Duhdee watching him he stuck his head under his bed and played with it under there.

So…my kid is playing with toys in a completely unscripted and appropriate way and we are *so* psyched. Yep, so excited that I just flashed back two decades…it’s like my brain is collapsing under the sheer AWESOMENESS of it all…or something…

All kidding aside…this is one of those little victories ((That most parents will not ever even take notice of because, of course, kids play with toys, genius.)) that make me feel like my heart is going to explode from the force of the love and pride I have for this boy.

I am so with it.

Melissa

Today is September 21 and I just figured out why I’ve been in a rotten, low down, hide under the covers mood for the last two weeks. No one has ever accused me of being overly bright.

I don’t want to remember that day. I tried really hard to avoid all the anniversary coverage but it was not possible. I really just want to pretend it, and the 6 months following, never happened. It was before Monkey, before Duhdee…it has nothing to do with my life anymore. I’m hoping that by acknowledging that the shock and fear and stress that sent me into a downward spiral, which ultimately left me hospitalized, were real…will let me crawl back out of this hole.

It’s like…I am this great big ball of AWESOME ((the most humble sort awesome, of course.)) but inside is still this teeny, dark seed of misery. I keep hoping will just die if I don’t feed it. So I take my happy pills and I turn my attention to other, much more important stuff and the AWESOME rules. Then I think, “Surely it’s gone now!” and peek.

Dude, I’m that idiot in horror movies who just HAS to open the basement door because it’s been quiet for SO long, surely the ax murderer is gone! D’oh! *sigh*

For those of you who are unaware…depression, it sucks donkey butt. That’s all.

**And I wasn’t going to publish this because *WAHHHH!* but also because it’s still hard to admit…if it’s hard to admit it needs to be dragged out into the light because…feeling ashamed of being depressed is more depressing than just being depressed.**

A little giggle.

Melissa

I’m putting Monkey to bed, yes, I took a break midway to blog this…is that odd?

**Fine, here’s why…I got home from work, late. Monkey was crying about something, nothing he could explain or we could puzzle out. I waited until he had calmed down before telling him it was bedtime and his whole face melted, again. I can’t put him to bed sad. Can’t/Won’t potato/potahto. So, I am letting him play Angry Birds on my phone for 5 minutes in bed. So sue me. Or pat me on the back and tell me how awesome I am. I do have a preference but I’ll let you make up your own minds. *AHEM* **

Back to the giggle…I put his PJs on him, it’s a pair I bought him in July. The first set I brought home had a hole in the seam on the leg that we discovered at bedtime. He wanted to wear them anyway so I let him. Then the next day I returned them to the store. The second set had no holes anywhere…OK they had holes for his head and arms and legs but other than that…no wayward holes. Except, Monkey still remembers that there was a hole in the seam. No matter how many times I have put these PJs on him and he has discovered, “Hey, no hole!” he still checks. Every time.

Tonight he checked again, he did it with such force he nearly knocked his chin with his butt…I love how much of a contortionist he is with is loosey, goosey fragile x ligaments…and I *hangs head in shame* laughed. So…Monkey did it several more times trying to make me laugh. Then, mid-contort, he farted. Just a little pft. I swear I DID NOT LAUGH. I didn’t even grin, at ALL. At least not until he tried it one more time and this time added the fart sound effect vocally. Then I laughed…a lot. Which made him happily proclaim, PEE EWWW!

Merry Christmas!

Melissa

It’s not secret that Monkey doesn’t exactly excel at morning transitions to school. We hardly ever have mornings when he holds onto me for dear life until we manage to pry him off and run like hell leave him in the loving arms of his teacher…but they’re are still iffy enough that when we have a good one it feels like Christmas.

It was Christmas here today, on a Monday no less!

Lately Monkey has been asking for “two monies?” on the way to school. We keep a fair amount of change in the car for parking meters and random panhandlers, so I started handing him two quarters. He’d say, “TWO of ’em!” and then ask for “two more monies?” This goes on for just about the entire ride. I make him count how many he has in between to slow him down otherwise we’d have no monies left! It’s been a win-win since he loves money (we’re working on “coins” he can say it but he prefers “monies” lol) and we love a happy Monkey. I even took some into the classroom one day last week and bribed him with it. “When you walk into the classroom, I have 3 more monies!” It worked.

This morning, I realized that we’re going to be broke before too long so I switched to dimes. I expected him to pass them back but it seems that if the coins are all the same, he doesn’t mind what denomination they are. Woot!

About half way to school, when Monkey asked for more monies I told him I would give him TWO MORE when he walked into the classroom. He asked two more times and both times I said, “You can have two more when you walk into the….” and he would fill in “classroom.”  Awesome.

When we got to school, we had to double-park again, which Monkey hates. Then Money did something really stupid, she walked in through a different gate. Monkey was having none of that nonsense and he guided Duhdee to the main gate we typically use. As I was walking to join them I was beating myself up a bit over the double-parking which I knew would bother him and then changing the entrance location. On a Monday. Stupid, stupid. I wasn’t terribly hopeful for the rest of the drop off but he totally rocked it!

He grabbed my hand as soon as I was within reach and he held onto it so tightly, I knew he was making sure I stayed on target ((Some day he may realize that this is an exercise in futility, Money is not a stay on target kind of girl. Anyway.)). Then we strolled on into his class! He took one small break at the trophy cabinet just outside the classroom door but as soon as I reminded him of the monies he walked in with a big smile on his face.

Yay Monkey!

I told Duhdee that a drop off like that is totally worth the $1.20 in dimes. We talked to the teacher last week about bringing in a bank of some sort so they can use it as a math lesson (and a savings lesson since he gets to keep the money, the teacher holds on to it during the day.)

I wish I could find a bank that gave receipts. He is his father’s son, he demands receipts everywhere we go…even at the yard sale I took him to a couple weeks ago, lol. He’d be in HEAVEN if he got one every morning, lol.

 

Spamalicious!

Melissa

I am so easily amused…instead of just deleting the gajillion spam comments I get here I like to skim through them once in awhile. Some of them are so amusing I had to share…

Such Praise!

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Uh…I think it’s supposed to be praise….

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Lest you think all the spammers love me…

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Errr…what?

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I wasn’t sure where to put this one exactly…praise, no or what?

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How is this for a wrench in the works?

Melissa

Duhdee and I came to a decision, finally, on the clinical trial. We decided that Monkey is doing so amazingly well on C.elexa (increased language, happier in general) *and* that since he’s just starting at a new school…it wasn’t fair to change his medications at this time. Soooooo…we emailed the amazing Dr. Nasir and asked him about increasing the C.elexa since he had mentioned he wanted to try some slight increases to see if Monkey had additional benefits.

Dr. Nasir called us back yesterday and said it was very interesting that we had brought up the C.elexa issue today because he had a notice on his desk from the manufacturer warning of heart risks at high doses. W.T.F.

He now wants to switch Monkey from C.elexa entirely. He doesn’t feel comfortable increasing the dose, even though it’s currently a tiny dose, given this information. Duhdee and I are back to considering the drug trial. We’re hoping Dr. Nasir and the study doctors can come up with an alternative for his anxiety that will allow him to participate in the trial afterall.

I said before that I would be disappointed if we couldn’t participate in the trial so I’m a little excited about the possibility of doing it afterall but…we just made up our minds! So much torture and now we get to start over…

***I’m rather amused to see what my related posts widget thinks is an appropriate similar post. Did it really have to come back to my liver???***

STX209 – You’ve heard of it, right?

Melissa

We here at Chez Monkey are very excited that there will be a nearby clinic for Seaside Therapeutics’ Phase III STX209 trial. We have spoken to the researcher at UMASS in Worcester and he’s given us the OK to share with you what he told us in our screening call. Duhdee and I are still discussing our participation, that’s a separate post though.

The screening call took about 30 minutes, it could take longer if you have more questions or if your child has more health concerns, Monkey is a healthy boy so we skimmed past most of those pretty quickly.

This first call is to establish preliminary eligibility. If you make it past this call, you will go to the study site for additional screening. So, what are they looking for in this first call?

  1. Your contact info.
  2. What language your child speaks and/or understands.
  3. If the fragile X syndrome diagnosis is confirmed. (If yes, they will want a copy of the report. If no, they can do the testing as part of the screening process.)
  4. What medications your child is currently on. There are some that are not being allowed, SSRIs are a biggie ((This is where Duhdee and I stumbled.)). Don’t assume you won’t be able to work around this though, the study Dr’s are willing to talk to your child’s prescribing physician if you are willing.
  5. If your child is on a medication that is not allowed, and you and your child’s doctor decide to remove that medication…and this is VERY IMPORTANT…YOU MUST TALK TO YOUR CHILD’S DR. MUST! MUST! MUST! The period your child needs to be off the medication will vary depending on what it is. Generally, between 4 and 8 weeks.
  6. What educational interventions your child receives, if any, and when that started (PT, OT, ST, Special Education, etc.)
  7. What behavioral interventions your child receives, if any.
  8. What dietary interventions your child receives, if any.
  9. How your child does with blood draws, there are 3 during the study period.
  10. If your child ever participated in a clinical trial and how that went.
  11. Any questions or concerns you might have about any of what you’d discussed.

If you make it through the screening call you will have to go to the study site for additional screening. The additional screening will involve…

  1. A physical exam.
  2. A medical history.
  3. A psychiatric history.
  4. An EKG. He said it was a simple EKG, non-invasive, and only takes a couple minutes ((He said it was not painful, I could not help myself and replied that Monkey has a different definition of painful than he does, lol.)).
  5. Filling out behavioral questionnaires ((Of course, do any of us ever go to any appointment and NOT have to do this??)).
  6. A blood draw. He assured us the nurses they use are very nice and very patient.

So…you made it all the way through and you are enrolled in the clinical trial. Now what?

First, there are two age groups being included in this trial at the UMASS Worcester site. Ages 12-25, which is, as of August 30, underway and ages 5-11, which should be getting underway in the next two weeks. They have the trial drug on hand and they’ve cleared their ethics requirements, it’s just down to the nitty, gritty, administrative stuff.

The trial will last about 4 1/2 months. During that time there will be 6 study visits to the Worcester location and 11 phone calls with one of the Dr’s. The phone calls will be every 4 days for the first two weeks then dropping down to once a week and eventually once every two weeks. The visits will vary in length, the phone calls should be 20 minutes or less. So, there is a time commitment required here and you will have to stay on their visit schedule.

In the ages 5-11 group, called the HARBOR-C trial, there will be 4 dosing groups:

  1. placebo
  2. 5 mg dose
  3. 10 mg dose
  4. 15 mg dose

That’s a 1 in 4 chance you will not get the study drug. Once the trial is complete, however, you will be given the option of receiving the full dose of the study drug until the FDA approves the drug for marketing.

In the ages 12-25 group, called the HARBOR-A trial, there will just 2 dosing group:

  1. placebo
  2. dose adjusted by doctor during a titration period

As with the HARBOR-C trial, once completed you will be given the option of receiving the full dose of the study drug.

That is about it. It’s not an easy process but it wasn’t terribly painful either (so far, at least.) Duhdee and I are still talking it over and will be sending a follow up e-mail with some additional questions. There is room for 6-8 patients in each HARBOR trial, they’ve had a fair amount of interest but the slots are not yet full so I encourage you to make the call and talk it over.

Michael Hill is stepping aside, the new contact is below!

You can reach Mike Kara at:

Michael Hill Kara Manchester
Research Coordinator
University of Massachusetts Medical School
Biotech I, Suite 100
365 Plantation St. Worcester, MA 01605
Phone: 508-856-2041 508-856-2789
Fax: 508-856-8211
Research Line: 508-856-5896
Email: Michael.Hill@umassmed.edu Kara.Manchester@umassmed.edu

You can find out more information about the Worcester research group at http://www.umassmed.edu/psychiatry/candi/index.aspx.

Check out ClinicalTrials.gov for more information too. If you aren’t local to us, there are 19 other study locations, check here for a list: Clinical Trial Sites.

And, I don’t really think this needs to be said but, Duhdee and I have no affiliation with Seaside Therapeutics. We are vocal supporters but we are not, in any way, compensated by them or anyone else for talking about this process. We encourage you to reach out to them and think about it but we still may very well come down on the “No, thanks” side ourselves. If we do, though, it will be a pretty big disappointment for us…we really want to do this but it’s all about Monkey’s best interests. Obviously.

He grew up a little right before my eyes today.

Melissa

Duhdee and I took Monkey on his very first hike in July and we noticed he had a great time but struggled on the more uneven terrain. Duhdee and I love to hike and we’d finally decided he had the endurance to do some easy ones. We were taken a little off guard to see his struggles and decided we needed to give him more opportunities to practice. All summer long we have been going on longer and longer walks and adding more difficult terrain. Today we tried the longest and most uneven trail of the summer and Monkey did so well! I could see clearly how much more attention he paid to his feet and where he was placing them. He was so much more confident too. He only asked to hold my hand very briefly on a steep part of the trail covered in loose gravel. I was so proud of him!

That is not, however, what the title refers to. The moment today when I was faced with more undeniable proof that my little boy is growing up occurred at the summit. We had sat down to enjoy a snack of grapes and apples ((Honeycrisp!!!)) and Monkey stood, turned to look at me and belched. Duhdee and I, being mature adults, completely cracked up. Monkey looked at us bewildered for a moment, smiled and then PURPOSEFULLY burped three more times…grinning at us the whole time. He taught himself to burp on command. Is he 7 or what??

He talks and talks and talks and talks and…

Melissa

people understand him!

This child had so few words when he turned 4 that our assistive tech specialist gently broached the idea that Monkey might not ever talk. This was, easily, one of my biggest fears when Monkey was little. People familiar with Fragile X reassured us endlessly that it was more likely that he would eventually talk than not and that, even if he didn’t, we would find ways for him to communicate so, when faced with the question, we told them that we knew he might not and they could make other accommodations but we were not ready to give up yet.

Monkey is 7 1/2 now and he won’t stop talking. It started slowly, a few words that made his life better…more, milk, o’s, and then it started to speed up, to use a metaphor Monkey would appreciate, like a runaway train. We’ve hit some sort of critical mass this summer. Instead of new words each week or each day we’re getting new words hourly at times. The best part is that all of his speech is more intelligible these days, we aren’t the only ones who are understanding him. He spent a weekend with my parents and there were very few things he said that they didn’t understand.

As if that weren’t enough, he is now suddenly using sentences and asking questions. “What are you doing up there?” to our neighbors on their 2nd story deck (they were eating waffles.) “What’s that?” when he hears a strange noise (it was an excavator, which is a little too close to escalator for him at the moment.) He’s even combined sentences, when asked if he’d had meatballs for lunch he responded, “Yeah I did. It was great!”

Some of my favorite Monkey sayings at the moment are…

  • Oh, goodness! (sometimes Oh my goodness!)
  • Spuddles! Splash!
  • Hold on tight!
  • Go through it!
  • Go for it!
  • Oh, yeah!

My most favorite is  one he broke out at bedtime a couple nights ago. Every night I say the same thing to him, “Good night! I love you, see you in the morning.” to which he has been responding “Night! Morning!” … now he’s added “love you!” in there too. It totally turns Money into a spuddle…