Minocycline Trial

We received a nice call a few weeks ago asking to enter Ayden into a clinical trial at the Mind Institute.  It turned out that he actually surpassed the age limit on the trial between sign-up and when they would be actually doing the testing, so we couldn't get him into that specific trial.  It is all seeming to work out though, as the same person was running that trial as is running the upcoming Minocycline trial!  She was very kind, and informed me that Ayden would for sure get into the Minocycline trial, to which enrollment would be happening mid-October. 

What does this mean for us?  Most importantly, Ayden will be seen at the Mind Institute and have a visit with Dr Hagerman.  For those reading that haven't heard of Dr Hagerman...she's basically the leading expert in the world on Fragile X.  (No, you did not read that incorrectly - I did say world).  Of course, this would also put Ayden on Mino, which is something Mr Awesome and I are actually hoping will help him out a decent amount. 

The tricky part to all of this?  We have to either fit in a visit to California before the end of the year, or wait until after the baby comes and go after that.  I think waiting will more than likely be the most beneficial, especially as we should have the baby tested by that point in time, but much will depend on what they want to do at the Mind Institute.

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Decisions Pt. 2

As I talked about in my last post, Mr Awesome and I decided early on in our marriage to conceive naturally and "take our chances" with the FX mutation.  Ideally, I should have been tested before we started trying for Ayden.  I know Mr Awesome urged me to quite often, but for whatever reasons I didn't. 

When I was pregnant (still in the first trimester) we had me tested and went through genetic counseling.  The genetic counseling was kind of a joke.  We had a counselor who had never heard of Fragile X even before meeting us, so she couldn't really even answer questions we had very well.  It was discouraging to say the least and left us pretty freaked out.  She basically didn't understand that FX was a spectrum disorder, so acted like it was an on/off switch when you hit 200 CGG repeats as to whether you would be totally mentally impaired or not.

The couple days after our appointment were not good ones for us.  Termination was never an option, but we were both scared.  I felt guilty because I hadn't gotten tested earlier even though Mr Awesome had urged me too many times.  Mr Awesome was angry, and I couldn't blame him really.  I knew his anger was a lot because he was surprised by what the genetics counselor said and also because he too was scared.  We certainly weren't sure how we could handle something like what was described to us.  Our emotions calmed down though, and we knew we were in this together no matter what.  I think we both realized that blaming wouldn't help anyone, and made a plan for what we could do right then - including finding a pediatrician knowledgeable about Fragile X.

You can read Ayden's Story to learn more about after he was born...I won't go into it here again.  What I do know is I wouldn't change a thing.  Ayden is so amazing, and sure he has his quirks but they make him our Ayden whom we are so blessed to have.

The decision was a little easier when we decided to have Issac.  I'm actually not even sure we discussed FX at all, just having another baby in general.  We certainly didn't know the full extent of Ayden's FX by that point in time, but I'm not sure that would have changed much either.  My pregnancy was definitely difficult in the aspect that Ayden's major frustrations and screaming started while I was pregnant.  I remember feeling like I was failing him and just very helpless as to what was happening.  Until we had early intervention come in, we really felt it was all behavioral, afterwards it was easier. Issac was born during this time.

We had pretty much decided by this time that we might have another child, but not more than one.  I didn't have baby fever around Issac's first birthday like I did with Ayden.   I also wanted to make sure that Issac started talking, I was always so scared he wouldn't.  (Of course I can't STOP him now!).  Mr Awesome and I had begun talking about another baby and eventually decided we would rather have them closer together as we planned before.  Two years apart seemed good to us (and still does!).  So we began trying again, only to lose a baby due to an ectopic pregnancy.  Then Ayden was diagnosed. 

We discussed PGD while we were at the FX clinic for Ayden.  There were some statements made to us that were...unsettling....that we had to deal with and PGD came up during that.  It was a lot to process, but we never discussed PGD again after that really.  Essentially, between the cost ($9k-$18k for one round, not covered by insurance) and chance of multiples...it wasn't the right decision for us.  There are processes in which they only implant one fertilized egg at a time, but it is more expensive to do it that way and could take more attempts than normal.  I'll have a separate post discussing PGD later, as it is one of the options for FX carriers

So, now we have Baby Car on the way.  (Did I mention Issac named baby....I think it's sticking too, at least until he has a name).  We're very well aware of the chances of having another FX child.  We will not be doing any prenatal screening, but will be testing baby at birth.  The test won't tell us much, but it will give us the chance to get early intervention for even a slight delay.  If I really think about it, it's scary. If the past four years have taught me anything though, it's to take it a day at a time.  I don't know what the future holds for us...who can? I'm just enjoying life, enjoying this new life growing, and enjoying my beautiful, wonderful family.

I'll be putting together more about carrier reproductive options at a later date, but if you're curious now you can always visit the NFXF web page about reproductive options as well.

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PECS Phase 1

As I talked about earlier, we are really pushing PECS with Ayden this summer.  After our visit at the FX Clinic, and a nice chat with Dr Benore - we realized we were doing PECS a bit wrong.  I realized I wasn't doing it "normal" per se; however, Dr Benore explained the actual logic behind PECS and why it worked the way it did.  Mr Awesome and I quickly decided we needed a crash course in how to actually train Ayden to use PECS effectively and as a communication tool.

It was not difficult in the least to find information online about each phase/level of PECS and how to implement/train for each step as well as what needed to be accomplished (and why) before moving onto the next phase.  Ayden has a lot of the groundwork in place from the simple exchange he has been doing at school, but we decided we needed to start from scratch at home to be sure the process behind it was cemented for Ayden.  Our main goal is to have him communicating independantly and these steps insure that to happen.

Phase I:
Phase I focuses on the physical exchange.  We want Ayden by the end of this phase to pick up a picture, reach toward a communication partner, and release the picture into the partner's hand to receive a desired item.  He's doing this at school fairly effectively, so it is really a short phase for us.  The key things are to use a variety of items, no verbal prompts to get him to give us the picture, and reinforce with complete sentences what he wants after giving us the picture.  For example "You want a car!" when he gives us a picture of a car.  Phase I is completed when he is consistently exchanging a picture to receive a desired item.

We have been working Phase I for a week with Ayden now.  He really understood this after the first couple training sessions (which sound a lot more "school-like" then they actually are because he's just playing, really).  I believe we are now ready to move onto Phase II - and not even into the summer yet!  (though our temperatures really say otherwise).  Phase II is all about increasing spontaneity and we will be implementing the book in this phase as well (a place for him to keep his picture cards, build sentences etc) - so I have a bit to get ready for.

The key thing we need to keep working on with Ayden which is not specifically written into the steps of PECS, but I think is kind of "understood" (and this is part of his IEP as well) is to initiate "conversation" by getting the person's attention appropriately.  I think we will be working on tapping on the person he wants attention from, though we have not decided for sure.  Essentially, we need this queue to be either verbal, or physical so he can gain attention when someone is not looking at him.  If anyone has any ideas, I'd love to hear them!

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Orchidometer

The following is a guest post by Mr Awesome, himself.  (Ayden's Daddy)

Orchidometer. It sounds like a tool the Ghostbusters use. In reality here is what an orchidometer looks like:

What are these specialty worry beads used for? I discovered the answer during the doctor's checkup of our oldest son.

First the doc pulls out a stethoscope, I'm familiar with that device, she listens to his heart. Thump thump. Next she pulls out a rubber mallet, still in the know there, she taps his knee and elbows. Whack, whack.

Then she jumps right in to it. "Can I check his testicles?"

"Uh, sure." I mean, she's a doctor right, that's one of the things they do. I've had the procedure done a few times; I'm an old pro at turn your head and cough. So we take off the little man's pants and she starts poking around at his assorted parts. Her gloved hands poke at his junk a little and then she prods his sack a couple of times.

She says, "Looks fine to me." Pants up, rubber gloves off, examination continues.

At the end of it, the doc, the wife and I take a seat at the table, the very small table. Why is it that everyone who works with children sits in those tiny chairs? I understand that it's a place for kids, but for the amount of money we pay in medical bills, buy a regular sized table, please.

There we are, the three of us hunched over this tiny tea-party table and the doctor is laying it out for us:

"This is normal. That is fine. This is normal. I'm a little concerned about this and that."

Then it happens. She pulls out the Orchidomter.

"This is how big your son's testicles are." She points to a round bead with number on it.

It takes a moment for this all to register. Various sized beads, each larger than the next with numbers on them. These aren't worry beads.

This is a ball measuring device. Immature smile creeps to my face.

"His testicles are this big, which is good." Push the giggle deep down.

"They could be this big." she displays a larger bead, cover the smile with my hand. I mean this is serious business.

"But if it were this big we might have a problem." she points to another bead which makes me question my own manhood.

"A lot of guys with this problem have enlarged testicles." Heh, she said testicle again.

"Medical stuff, medical stuff, testicle." She won't stop saying it. Showing us more, even larger beads. Stifle that chuckle.

"Serious medical stuff, more serious stuff, testicle." Damn it, I'm starting to laugh.

She shoots me a disapproving doctor look.

Uncomfortable laughter, "I'm sorry, I just, the beads, it's so..." I'm a twelve year old trapped in a thirty year old body.

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Clinic Visit - Day 2

...and onto day two!

Our morning started with the speech language pathologist.  (Who, by the way, was FANTASTIC).  Ayden was already in a mood when we got there.  I think the past two days were wearing on him after being in the car for 7 hours, sleeping in a new place, and the previous day's evaluations.  He did get a good night sleep, but we could tell early on he wasn't doing well. 

The SLP spoke with us about his history, his current IEP, and basically where Ayden was at overall.  We then had him go through the standard SLP test - he's done it before so he kind of knew how it worked.  He is asked a question, the points to the corresponding picture.  As expected, his receptive language tested right at or around his current age, with his expressive being of course much lower. 

The most interesting thing to me was that he actually has a medical condition that makes it so he can't speak, as opposed to him not wanting to speak.  Developmental Appraxia of Speech is what she called it.  Speech therapy will be very effective in treating this, and with time will hopefully correct issues.  It is why we often hear words from Ayden, then sometimes never again.  I do have to say it is a relief to know there is something we can do though and working with the SLP one-on-one should help out immensely.

So, our recommendatons from the SLP were as follows:  get a one-on-one SLP to work with Ayden to work on oral facilitation and touch desensitization to his face.  This is over and above what he is/will be receiving at school.  We should also work on comprehension past nouns including stabilizing words (under, over, up, down etc), verbs, and word approximations.  Also work on motor noises, environmental sounds, and identifying parts of a whole.  She recommended looking into an AAC device and/or alternative communication such as signs, PECS, etc keeping in mind to use multiple ways as they all will actually help facilitate expressive language.  She also recommended using purposeful play for most of these things I listed out above.  Another thing she was very insistant on was making sure we were following his non-verbal queues such as when he was done with something.  She said positively reinforcing the non-verbal queues he was sending to us is just as important as reinforcing the verbal ones - which I totally agree with, though we of course never thought about that.

She really was amazing to work with.  I wish we lived closer because I know she would work exceptionally with Ayden and our SLP experience hasn't been great after "firing" our first one, having mixed feelings about our second, and while I have no complaints about his in-school SLP, the one in Akron made me realize what we are missing out on. 

Our next and final stop was at the Occupational Therapist (OT).  I do have to admit, I was extremely spoiled with our first (and only) OT Ayden has ever worked with.  Ms Jane was so beyond amazing....it's hard to compare anyone else to her.  Unfortunately, she retired at the same time Ayden moved out of the EarlyOn program.  Anyhow...this OT left much to be desired.  We came in with specific questions of which none were answered.   The entire time we were with her she basically just asked questions we had already answered and put Ayden through the standardized testing - not very well I may add.  It took a lot of help from both Mr Awesome and I to get Ayden through it, while she mostly just sat there.  I know she CAN do that, but having been through this testing before - I know there are multiple ways to get the same goal and she seemed very unwilling to do anything outside her little box.  For an already over-stimulated little boy...it was just a lot.

As expected, Ayden again tested within his age range for cognitive functioning, but tested very low in fine motor skills.  Her recommendations were to work on drawing upright and full body movement to keep him interested.  We need to work on drawing and handwriting for him a lot to prepare him for kindergarten.  She did give us a couple programs to try as well as a few other activities to work on fine motor skills.  As with everyone else we saw, she did recommend additional one-on-one OT that was sensory and motor based.

Again, I am just so disappointed in how the OT worked with Ayden.  She was supposed to be better for FX kids, but it seemed like she was almost annoyed by Ayden and the fact he was overstimulated.  She was really the only person we saw that I have anything bad to say about.  I really hope her report that she sends is much more conclusive and answers the questions we posed to her.  I know Ayden would benefit from a sensory diet, but I have no idea how to incorporate that and that was our biggest question/concern we posed to her! (to which she replied "I'll put some ideas in my report")  The one positive thing was that she was from Michigan, so did have a few local resources for us. 

So, between the two posts here I think it's a good summary of what we covered.  We have Ayden's IEP coming up on Thursday to set next year's goals, and Mr Awesome and I have goals for him for the summer as well.  We basically had to piece through all this information and decide what was most important because we obviously cannot tackle all this at once.  Not only would it be overwhelming to us, but also to Ayden.

Now, we need to go about finding a local SLP and OT for Ayden for one-on-one work.  I have to admit, this is going to be difficult.  We of course need both of these therapists to have a pretty specific skill set - and while I don't think we will find one locally familiar with FX, I can hope, right?!   I emailed the FX Clinic coordinator at UM to see if they could give us some recommendations for therapists explaining we had just been to the Akron Clinic where they were unable to give local therapist recommendations (understandably so), but was basically told we had to fax them medical records and obtain a referral - THEN be seen at the clinic before he could talk to me about it.    FRUSTRATING.  So, I guess I will just have to start looking up some SLP/OT in the area and see what I can find out. We definitely want to get at least an SLP for Ayden over the summer.

And that is where we are at now.  It should be a busy week with the IEP coming up and we are once again going to try some potty training with little brother.  All-in-all, great fun. If anyone has any insight or recommendations that may help with any of this, I would be extremely grateful for the advice!

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Clinic Visit - Day 1

It's difficult to know where to begin this, as we were just given so much information.  Those that have been through that first clinic visit I'm sure know the feeling!  I'm glad I had a good idea of what was happening as far as the standardized testing and such ahead of time.  We've been through all of that before, and it really wasn't much different.

Day one started at 8 am.  We met with Dr Delahunty and Dr Benore for a better part of the morning; though not at the same time.  We were in a one-way mirror room where they were observing Ayden and us together while we answered numerous questions about my pregnancy with Ayden, family history, and of course about Ayden himself.  Ayden pretty much played the entire time, except when he had to be examined (which really was about 10 minutes all together).  Dr Delahunty was fast and efficient, she is used to working with FX kids...and Ayden's affinity to being touched was apparently not one of the worst.  Let me just say, I would hate to see the worst if he's on the mild end!

We had some good discussions with Dr Benore about behavior modification before we left for the morning.  It was nice to hear that we were doing a great job with him already. (He noticed and gave examples from the morning that we'd already done)   I've heard often that so many parents need to be taught proper discipline before the doctors or therapists can even being to start teaching them how to actually modify the behavior.   He gave us a lot of resources to look into and strongly advised us learning about behavioral psychology.  Knowing how it works should help us as we begin to start any type of behavior modification.

The "meat" of the day really though, was in the afternoon when we met again with Dr Delahunty.  She went over what they found in the medical exam and what her and Dr Benore's recommendations were for Ayden.  A lot of what we received was medical terms for things/quirks Ayden has - so I'm going to go through them one by one.

1) Sleep Latency Disorder - Ayden doesn't produce enough melatonin, which is why he has a difficult time falling asleep at night (though, we thankfully don't have the added problems of him staying asleep - he does that just fine most nights).  It was recommended we put him on 1.5mg of melatonin (over the counter) an hour before bedtime.  Overall, this gave us some very immediate results.  We picked up some melatonin after our appointment and today will be day 3 of Ayden going to bed without any issues whatsoever. 

2)  Anxiety NOS - We of course knew Ayden suffered from anxiety, especially in social settings.  Luckily, it is considered very mild and their recommendation was to start teaching him ways to self-soothe himself when he feels anxious.  The recommendation was to consult with a behavioral psychologist to help with teaching self soothing methods; however, we are going to work on this one ourselves for a bit first and then if it's not working we will look into outside help.  It will take a decent amount of observing him, but we've helped him with calming/coping skills before and they do work.  What we need to do now is make it so that those calming/coping skills are things he can do by himself instead of relying on us for help.

3)  Flat Feet - Again, not a surprise to us.  Also, not a concern.  Unless he starts having terrible balance issues or pain (which would more than likely be when he is older) we can leave this part untreated. 

4)  Muscle Tone - I want to do a big HOORAY in this area.  Ayden has had low muscle tone in his legs and jaw since he was born - but it seems to have corrected itself!  His jaw has other issues, but low tone and high palette seem to be non-existent now.

5) Autism - This is a big one, at least for me.  Let me preface this by stating that 60% of males with Fragile X fall on the autism spectrum.  That's a pretty big chance of course, and quite honestly while it is hard for me - it's not unexpected either.  Ayden tested into the "mildly autistic" range of the spectrum, being listed as "Autism Spectrum / Pervasive Development Disorder (PDD).  Essentially, he has problems socializing with peers, low to no verbal speech, atypical play habits, and repetitive motions (with Ayden, this is hand-flapping and hand biting)

So..that's the basics of our day one.  Our overall recommendations were to first and foremost get him as much speech/language therapy as possible.  Anyone around us knows this is our goal as well - speech / communication is definitely priority number one around here.  The other things were to push visual communication (where HE is imitating conversation), PECS training (for mom and dad), and ABA Therapy.  Another vision and hearing screening were also recommended as well as a private physical therapy evaluation.

Overall, it really was a ton of information - but it was ALL good.  Ayden behaved above and beyond what I ever could have expected out of him.  Dr Delahunty actually commented that he is the most well behaved FX kid she has ever seen - which she may say to others, but it made us pretty proud of Ayden.  Day two consisted of evaluations with a Speech Language Pathologist and Occupational Therapist.....which I will talk about in a later post.  I also have a VERY funny story to share but I must save that for later as well and put myself into bed!

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Clinic Visit

I'm going to put this as a placeholder for now, but want everyone to know I'll be posting sometime in the next few days about our clinic visit (though hopefully tonight!).  We're still kind of recovering, and as you can see from the posts below I had some other things to post about as well! 

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MI Fragile Clinic Opens!

This is a direct copy of the email I received regarding the opening of the MI Fragile X Clinic.  We are SO excited that we now have an in-state clinic (especially after driving 5.5 hours this week to get to one!)

Although it is still going through the process to be an official, NFXF-sanctioned clinic (see more at http://www.fragilex.org/html/clinics.htm) and part of the Fragile X Clinical & Research Consortium, the Fragile X Clinic at the University of Michigan is open for business!  An exciting time for families in Michigan.

As you know, we had Dr. Peter Todd speak at our Fragile X Association of Michigan meeting last Saturday evening.  It was great to have him there.  He filled us in on the FXTAS research going on in the Todd lab at U of M, gave us some genetics info and subjected us to a genetics quiz.  It was a great meeting and well attended since we had a special guest.

If someone is interested in going to the U-M Fragile X Clinic (for someone with FXS, FXTAS or FXPOI or a possibility of one of the Fragile X-associated disorders), they would contact:

Rob Owens - Fragile X Clinic Coordinator
734-232-6750 or 734-763-3427
rowensii AT umich.edu

The three directors of the U-M Fragile X Clinic are:

Jeff Innis, MD, PhD
Professor of Human Genetics; Professor of Pediatrics and Communicable Diseases;
Director, Division of Pediatric Genetics; Director, Michigan Medical Genetics Laboratories

Donna Martin, MD, PhD
Assistant Professor, Department of Pediatrics, Division of Genetics,
Department of Human Genetics

Peter Todd, MD, PhD (specializing in FXTAS, more details on FXTAS at FXTAS.org)
Bucky and Patti Harris Professor
Assistant Professor of Neurology
Department of Neurology

There are a number of specialists at University of Michigan and other clinics in Michigan who are interested in being your Fragile X experts in the state.  Again, the first step would be to call Rob, Clinic Coordinator.

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...and just like that we're into May!

It's a busy month for us here, but most of it will be condensed into the next two weeks or so. Next week, we will be leaving Issac with Auntie Cole and Uncle Jon while we take Ayden to the Children's Hospital in Akron, Ohio. It's difficult to think of leaving my baby for that long, but of course he'll be great. I doubt he'll even notice we're gone!

As for Ayden, I'm sure he'll enjoy the time with Mom and Dad including our roof-top hotel pool. Luckily, these evaluations won't be too stressful on him, but mom and dad will get information overload! I'm more worried about the car ride as far as Ayden is concerned. Four and a half hours in the car is a lot for him, but we'll make sure we have Angry Birds charged up. I find myself wishing we had our portable DVD player by now, but we'll manage.

After our clinic visit, we have Ayden's IEP. While not our first IEP, it will be the first since his official diagnosis. I noticed they added and Autism specialist to the invite list - so that should be interesting. The clinic is already aware we have our IEP coming up and will be giving us some suggestions while we are there so hopefully the things Mr Awesome and I want will be given place on the IEP without much fighting (or any at all!). We're very lucky to have a good team with Ayden already, so I don't anticipate any issues.

Meanwhile, school is quickly coming to a close for Ayden and I need to be getting myself prepared for the summer months. That means making sure I have special one-on-one time with Ayden to do some learning/speech since he won't be getting that at school. We are also going to be looking into Speech and/or Occupational Therapy over the summer. Our insurance covers 36 visits a year if "medically necessary" - so hopefully we can get Ayden under that and get 1 or 2 visits a week while he is out of school. It shouldn't be an issue, but who knows with insurance! We are definitely bringing it up at the clinic visit and I'm sure Ayden's normal pediatrician will help us however we can - she is pretty great.

So, that's us n a nutshell. The good thing is we come out of this month with a definite 'THIS is how we are moving forward' plan. I'm very excited for the upcoming year. I think back to Ayden at the beginning of the school year and how he wouldn't even put on his backpack, talk, sign. His main form of communication was pointing randomly in a direction and we expected meltdowns every time someone outside our normal family even entered the home (let alone going to someone else's!). Now we see him walking up and down stairs, putting on his own coat, taking off his shoes/pants, washing his hands (with help), saying a few words, using some signs, going to other people's homes with no meltdowns, waving and/or hugging people when they come to visit... OH THE PROGRESS! It really is amazing how much he has grown since school started, so I'm sure you can see why the upcoming year is looking wonderful for us.

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Chewy

It's spring break week here for Ayden...which means our normal schedule is changed and causes a bit of anxiety for both kids.  Overall, it's not too bad though.  Yesterday morning was A LOT of screaming.  Issac was not okay sharing his 'mommy time' with Ayden, so every time Ayden came near mom, Issac would scream.  Ayden basically whined the entire morning after birds was taken away. 

What is birds?  Angry Birds.  (known as "BIRDS" around our home).  Let me just take a tangent here for a minute and talk about this little game and it's impact on our house lately.  Mr Awesome and I both have Android phones, and both have Angry Birds on our phones.  We would play while the kids were watching a movie, or while sitting waiting for something.  It caught Ayden's attention and we started to teach him how to play.  While it was great that he was playing a game he loved (that helps SO SO much with coordination) - Ayden's hands are not clean...EVER.  He chews on them or his clothes, or toys..and it is wet.  You can imagine putting wet hands all over a touch-screen phone is just..well, gross...so playing on our nice, expensive phones was just not a good option.  Enter the ipod touch.  I have an ipod touch from when they first came out.  First generation, no external speaker, unable to upgrade to iOS 4.0 - so essentially worthless in the apps department.  As for music, well, my phone actually has more room for storage, so the ipod has been sitting around lonely and unused. 

I decided to put Birds on it for Ayden to play.  We confined him to sitting while he was playing it and it worked out nicely.  Except it is the only thing he wants to do all.the.time.  Ayden often has to 'saturate' on toys that he likes before he will put them down.  The first time we actually paid attention to this was when he attached to a toy that our OT brought.  After basically doing nothing but playing with a shape sorter for three sessions which all ended in a mess of tears, we decided to pick him up one for home.  It took three months for him to get to the point where he would put that toy down.  (yes, you read that correctly, MONTHS).  We are working on the saturation phase with birds for Ayden currently...so most of the time saying no or taking birds away ends in whining or tears (or screaming, hitting, or tantrums if we are very unlucky).

Back to yesterday...I turned around to see Ayden with an entirely black face chewing on my ipod.  While I'm okay with him playing with it...chewing on it (even though it's in a hard case) is just not okay.  He's 'mouthed' it before...but never chewed on it like he was.  Maybe gnawing is a better word...  The black on his face was pieces of the leather from the case (it's a hard case, with fake leather covering it).  While he chews on things, this was a bit over the top even for him.  I took it away, and that seemed to be the end of it.  Our afternoon was birds-free and went much better than the morning.

So..today turned out to be a repeat of yesterday's chewing incident.  I am not sure why he is chewing on things like that.  It's not new for him to chew on toys or objects, but the extent to which he is chewing on them is.  This morning I replaced birds with his 'Chewy'.  Ayden's Chewy is basically a hand-shaped teether.  I was calling it his "hand" but didn't want to confuse him since I don't want him chewing on his actual hand...so Chewy it is.  He sat on the couch for about an hour gnawing on Chewy.  I mean, I could hear him chewing on it.

So, I'm not sure if the extreme chewing is a result of anxiety over his schedule changing (or something else), if he is teething, or if maybe it is something entirely different.  I'll be making a trip to the store to restock gum for him and hopefully this won't last too long.  I feel like we've been through a phase like this before, and feel like it was also last spring.  Admittedly, neither Mr Awesome nor I can remember - I can only place it to between October 2009 and July 2010 because I know or OT helped out with it last time. (which is a large window).  If it is the spring, maybe it's aggravated by allergies or something.  I'll have to keep track of when it is worse/better so maybe we can avoid it next time around.  (Also will need to make a note to ask about it at the clinic next month too!)

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MIND Institute

Friday night, we had an interesting late-night call! Around 10:30 PM, my phone rang with an out-of-state number. I assumed it was a wrong number given the time of night, but turns out Louise from the MIND Institute was returning my email with a call.

I was able to call her right back, and we talked for about a half hour. It essentially boiled down to a couple things. First, they definitely would like to see not just Ayden, but also myself and Issac. Second, they are very interested in seeing us because of the 'family pedigree' as she called it. Studying how FXS moves through families is of a great deal of importance to them.

The end result, we put ourselves on the waiting list. (It's pretty long of course) We need to contact them again in three weeks to find out who our scheduler/coordinator will be, and then take it from there. In my head, I'm thinking at least fall before we would go if we do end up going. They are really interested in children around the age of 2 that are carriers (and control subjects), so Issac may get us in a bit more quickly than 'normal'. We would have to have him tested first, but we figure we'll talk about it when we know more and decide then. Issac is not yet showing any signs of having FXS at all at 23 months.

I'm very happy things seem to be falling into place for us. I feel a bit overwhelmed right now with all the "new" things we can do for Ayden and am SO excited to move forward getting him all the help we can.

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Fragile X Clinic

It's been a week now since our official diagnosis. Even being prepared for the diagnosis didn't make me realize actually how much more there was to do for Ayden. To compound our list, we also had parent/teacher conferences at his school this week! First up though, FXS Clinics.

Mr Awesome and I decided after the diagnosis that it would be beneficial for Ayden to have him evaluated at a Fragile X Clinic. His current 'team' does an amazing job, and we try to stay consistent between school and home; however, we figure it won't hurt anything and it could definitely help him.

We don't actually have a FXS Clinic in our state, so we had to look at ones out of state which of course brought up insurance issues. We easily narrowed our choices down to three clinics.

1) The M.I.N.D Institute
We don't figure we will be heading here (Michigan to California is a LONG WAY), but since multiple family members of ours have been evaluated here I contacted them first. I doubt our insurance will cover an evaluation here or that we could afford to travel so far; but participating in clinical trials or research can cut those costs down. It never hurts to ask, right?

2) Rush University Medical Center Fragile X Clinic
This one is pretty close to us. We also have family in the area, which would help if we make multiple trips or needed a place to stay. I started out with a quick email to the clinic coordinator (found on the National Fragile X Foundation website) They called me within 4 hours of the email going out, I was pleasantly surprised as we figured it may be a week or so. After a call or two with them, we figured the initial evaluation was definitely covered by our insurance and they can get us in for a visit in May. That first appointment lasts for two hours while you meet with the doctor there. I requested another appointment other than a 12:00 PM in May after explaining Ayden napped from 12/1pm to 2/3pm and was given an alternate date/time in July at 1pm. We scheduled the 12pm figuring the appointments filled up fast and knowing we can cancel later if needed. I'll be honest, my first impressions were not great.

3) Akron Children's Hospital Fragile X Clinic
This is the other clinic fairly close to us. It's just about as far as Rush, but without the benefit of a place to stay should we need it. Again, I started off with an email to the clinic coordinator. Again, I received a call within about 4 hours of my email going out. I talked with the clinic coordinator for about 30 minutes and she answered all the questions I had as well as explaining how their initial evaluation worked. We'll meet with a behavioral therapist, the doctor, an occupational therapist, and the speech language pathologist over the course of two days. Not only was she very polite, she also knew LOADS about Fragile X - which is a major plus. She asked a lot of history and without me asking let me know they did intake appointments scheduled around nap times. Color me impressed. A quick call to insurance told me we were fully covered at this clinic too. While they could get us in during April, the dates were over Issac's birthday so we opted with a May appointment. (They do initial evaluations once per month)

So, we have an appointment with two clinics right now. We decided to keep both, then if we decide we don't like the Akron Children's Hospital Clinic, we'll keep the appointment at Rush. If Akron turns out to be great, then we'll cancel the appointment at Rush. Meanwhile, I'm still waiting to hear back from the MIND Institute. I don't expect anything to come from that, but you never know.

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