Two Minutes

Two minutes of Evie and me wandering around in her carrier while she tests out her face and her voice.

Knew It Was Coming, But...

...it doesn't make it any easier to hear confirmation.

I have to admit that I've been deluding myself.  Deluding myself into thinking that Evie would be okay, that she'd beat the genetic odds and have nothing to worry about...maybe a bit of shyness and difficulty in math, but otherwise totally typical and average.

She went for an evaluation today, and the analysis was that, at five months old, she's at about three months in cognitive and physical development.  That was a bit of a gut punch, I have to admit.  I was really, really hoping that it would come back with a near-dismissive "pheh, she's FINE!  Why are you even here?!"

I really wanted to hear that (I wasn't there personally; I only got the message afterwards).

The optimistic view would be to fall back on the "all children develop at their own pace" cliche.  But we lived through that with Henry already.  And denial can be a powerful defense mechanism to protect oneself against news one doesn't want to accept or acknowledge.  Henry needed help and he's getting it, but it's a slow battle and it certainly hasn't been easy by any stretch of the imagination.

The prospect of repeating it with Evie seems daunting right now.  It was that reason that made me wish and hope that Evie would be the one we didn't have to worry about.

But then that brings on another issue in that if Evie was the one we didn't have to worry about, would we inadvertently neglect her in favor of caring for Henry so much?  I often find myself getting hauled off by the boy in his next quest to ramble face first through the kitchen and front room, while Evie lays by herself on the floor or in her bouncer seat.

There are times when two of us adults are wrangling Henry while the third is preparing dinner....and Evie is left alone.  And I feel a crushing guilt when I see that.  I think that may be a contributing reason to why I've gotten so attached to the carrier harness thing that I stick her in so that we can walk around together while my hands remain free (I've eaten sandwiches above her head while wearing it...I used a plate!).  Henry complained quickly when he was put in it, so I only used it once with him.  Evie doesn't complain so she goes in it as often as possible.

And of course, then comes the snowball effect of "if I start paying more attention to her now, is it because of equity or because she needs the extra care now as well?" and round and round I go in my head in a self-defeating circle of rhetoric.

So, Evie's therapy sessions begin next week and like Henry's, they'll go up to the end of the school year.  I won't get to see her awake today because it's nearly the end of this winter semester for me. The guys in my group project wanted to meet early before class to finalize our presentation, so I'm off to school without stopping at home.  That makes me sad, but it's all for the greater good, right?  All to improve my future employment prospects and chances, right?

Quick Drops

Not a long, poignant novella this time.  Just a few quick hits.

Last weekend, Lori and I took the kids out to Somerset Collection just to get out of the house for a bit.  Evie ended up falling asleep in her car seat, and Henry did well in the different environment.

While Lori and I stopped briefly for a late lunch, we gave Henry some small pieces of chicken from Lori's order.  And to our great surprise and delight, he didn't choke or gag on any of them.  He actually ate Real Food!

When it was time to leave, I had him stand on his own while I put his jacket on him.  Lori began walking away with the stroller, and Henry, instead of raising his arms to be picked up, started toddling off after her.  Not just that, but walking without holding my hand.  Lori kept looking at his reflection in the store windows and there he was, just following behind her while I walked behind him to catch him if he stumbled.

We tried to put him back in the stroller when we got to the exit, but he wanted to keep being held.  So I indulged him there, but we gave him lots of hugs and praise.

Yesterday was some more tummy time for Evie.  She actually managed to stay in that position for about 3 minutes before she started complaining.  Not just that, but she did her best to lift her head to look ahead of her.  Still no "mini push-ups" yet, though.

"It's Normal"

Two words that seem insignificant in some contexts, possibly a backhanded compliment in other contexts, but sometimes, hearing those two words can certainly make some weight lift from one's shoulders.

While I'm not so naive as to think that one day we're all going to just wake up and Henry is going to be a typically chatting and moving 2-year-old, hearing his physical therapist remark that his separation anxiety reaction was "normal for this age" was truly a big thing for me to hear.

We started off in the occupational therapy room where Henry had a fairly good time playing.  He started off, as he usually does, very clingy, very whiny, and not wanting to lose the reassurance of my presence (this was also the first time since I went back to work that I took him to his sessions).  But when it came time for PT, it all fell apart.

He was nervous and agitated as we neared the PT room (which is a giant playroom filled with all sorts of toys and equipment with which we adults could go crazy for an evening after drinking...), and became even more disconsolate as our therapist took him over to one of the toys to begin.  Then I realized that I left all of our stuff down the hall in the OT room, so I ducked out to go retrieve them.

I could hear Henry howling at the top of his lungs all the way down the hall, into the OT room, then back up the hall toward PT.  When I returned, his face was contorted in utter despair, fat tears streaming down his cheeks.  He desperately reached his arms toward me, and when therapist Jen put in him the platform swing (something he usually likes), he made every attempt he could with his skinny arms clawing at the air to get to me, giving no thought to the unstable platform or the 3 inches of empty air between the swing and the mat on the floor.

He clambered toward me, crawled in my lap, and buried his face in my neck, wailing as if the world was ending.

That was when Jen reassured me that his reaction.... was normal.  The separation anxiety that kids feel at this age was typical, and Henry displayed something typical!

There are definitely some regrets over pulling Henry out of daycare.  He doesn't have the daily social interaction anymore with other kids and adults, with structured routines and other daily activities.  His social anxiety levels have climbed because of the insulation of living at home and not going to school every day anymore, and while I don't have any hard data on causation/correlation, I have to believe that his lessened exposure to other people is a significant contributor to his nervousness.

But given his age, his body size, and his developmental stage, he likely would've found himself in that limbo -- he's still cognitively an infant in many respects (and in some physical aspects), but he's otherwise physically a toddler.  The Toddler Room next door to the Infant Room was where he'd have gone had he been on the typical developmental track, but those kids would've run over him like trains.  The likely course would be one of the special ed rooms but I have no idea what the pricing structure for that would've been, had it even been an option.

So to hear that he's doing even one thing "normal" felt like a relief, a brief respite.  We'll keep going to as many social functions and services as we can to keep Henry from becoming too socially withdrawn, though it's hard.

"Keep sending him up."

Miles for a Pickle

By now, I think my dear and appreciated audience understands that certain achievements that the kids reach that would otherwise be "normal" for typically developing kids are huge deals to us instead.  We often go through a day worried that the kids will never walk or eat or talk as expected for children of their age, and it's a hard thing to reconcile on most days.  We have fears that, because we're older parents, we're going to be taking care of a 20-something-year old 5-year-old when we're in our 60s.

So it's moments like below that fill our hearts with so much joy and hope that we feel the need to share what would otherwise be a run-of-the-mill event in typically developing kids.

Henry showed interest in eating solid foods:

We were at Sherwood, like we tend to be.  In the afternoons, it's a wonderful place because, well, we love the owners, we love the staff, and there's room for Henry to run around.  They understand our circumstances, and only newbie customers who just don't get it look at us askance when Henry's in "wrecking ball mode."

But Henry not only took an interest in Lori's pickle spear, but started eating it.  This was huge.

He didn't gag, he didn't choke, and he didn't throw up.  In fact, as the video shows, he showed interest in the pickle.  He showed more interest in the pickle than what's shown in the video clip because I didn't think to actually record it until he was almost done with pickles.  But the pickle spear that he's eating in this clip is actually the second spear we gave him.

I cannot express how happy we are that he's showing an interest and tolerance for food that isn't pureed baby food.  The worry up until this point has been wondering how to get more calories into this skinny boy, because Gerber Stage 3 baby food wasn't meant for two-year-olds in terms of quantity or nutrition.  So while we're not out of the woods yet, this gives us hope.

Welcome, New Friends

To my Facebook friends I've added recently, welcome.  You're here because I directed you here to explain a very significant aspect of my life.  Many of you know that I have young children, but you may not be aware that my kids aren't typical.

Clearly, the theme of this blog may give you some idea of what's going on, but to summarize, the kids have Fragile X Syndrome, a genetic disorder that manifests in a way similar to autism spectrum disorder.  In fact, FXS is leading genetic cause of ASD.  But this doesn't necessarily mean that the kids are autistic.

What it really means is that they will have some challenges in life, as will we.  We don't know what the extent of their challenges will be.  So if you read me talking about accomplishments that they achieve that sound a little "behind," like going nuts over the fact that my nearly-two-year-old son has finally begun speaking, it's not because of "all children develop at their own pace," or some other cliched platitude like that.

It's because for a kid with developmental delays and possible intellectual disabilities, something like that is huge, for both him and us.

The problem is, again, that we don't know what is in store for these kids.

So I invite you all to peruse the pages and links I've put up.  This will hopefully give you some background into why I may post a few statuses on FB that may come across like a 21st Century Helicopter Parent of the Year candidate.  It is, in fact, the culmination of a long road that we've traveled thus far, and the long road ahead of us.

We don't have typically-developing kids.so it'll be somewhat difficult to relate at times.  Just as it's difficult for me to relate to the parents of kids who don't have these developmental issues to contend with.  I may occasionally look with envy at parents who are having "normal" problems with their kids, because I know that I may not experience those "normal" problems.

It may seem awful to use the term "normal" in that respect, as if my kids are subhuman somehow.  But to be blunt, they don't fit into the "normal" stream of life -- not necessarily "lower" or "inferior" or "unworthy," but just off to the side somewhere.  The reality also is that when medical professionals respond to us with "fragile what?" at various appointments, it's hard not to get discouraged.  It's hard when medical professionals have to act with confidence and dignity but give us bad advice that we know is bad advice -- advice that's geared toward typically developing kids that doesn't apply to our case.

So on occasion, you may read about our frustrations and our celebrations.  Hopefully, you now have a better understanding of why we're making a big deal out of certain things that would otherwise seem like it should be routine.

Thank you for reading, and see you out on the ocean of social media.

Regression Analysis

(yes, another math play on words)

With luck, Henry's regression period is coming to a close.  He's starting to stand on his own again instead of just folding up his legs whenever being lowered to the floor.  A few days ago, he'd started again to stand on his own power when he was distracted, and only collapse in a pitiful heap when he realized that he was standing and that we were paying attention.  Lately, his standing has been less and less surreptitious and more deliberate.

It was heartbreaking, really.  In light of the developmental delay, when he had really gotten into the walking-with-assistance/charging headlong into adventure, it was tiring for us, but a good thing because we thought he was physically catching up to kids his age.

Then Evie arrived, I went back to work, we switched bottles on him, and things went to hell.  He suddenly reverted back to "helpless little baby."

At first, we thought he was injured somehow, between all the running and the braces we have for his feet.  But neither we nor the doctor could detect any physical injury or discomfort.  That led to our only remaining option of toddler-based regression.

One step forward, two steps back, as it were.

But if I was to force myself to look at the positive takeaway of this, this means that Henry has enough situational awareness to have regressed at all.  If he was completely out of touch with his surroundings, I doubt this would have happened.  Small comfort, truly, but comfort nonetheless.

(though admittedly, constantly having to look for the positive in daunting situations just to keep from giving up and crying does get very exhausting after a while)

Paper Cuts and Lemon Juice

An interesting write-up, how The Princess Bride can equate to parenting a child with developmental disorders such as ASD or, in our case, Fragile X.

I especially have to be mindful of #8:

There’s not a lot of money in revenge

- Inigo Montoya

Don’t spend your life feeling bitter, blaming yourself, hating autism or resenting parents of typically developing kids. It’s a fruitless and costly waste of energy that can be directed into more productive things.

Admittedly, it's difficult to rein in the snap reaction when well-meaning parents of typically developing kids offer us advice.  They can't possibly have any idea of what this is like, or how much it hurts to hear that our kid is actually that far behind, developmentally, because he hasn't achieved the same milestones as his typical peers.

That's what's going through my head, silently hidden behind the plastic smile with gritted teeth, deliberate eye contact, and strenuously controlled rhythmic breathing.

"Yes, I'm sure he will start talking incessantly soon," I say.

"HOW THE HELL WOULD YOU KNOW THAT HE'S JUST ON THE VERGE OF TALKING WHEN HIS SPEECH PATTERNS ARE THAT OF AN 8-MONTH OLD??!!?" screams my brain.

"He's 20 months?  Oh, it's gotta be tiring trying to chase after him, huh?" says the grocery clerk, sweetly.  "He's a handful!" I say cheerfully but vaguely.

"NO IT REALLY ISN'T THAT TIRING BECAUSE HIS BODY IS BETRAYING HIM BY NOT DEVELOPING THE MUSCULATURE HE NEEDS TO BE ABLE TO SURVIVE ON HIS OWN," my spirit cries.

"Oh, he'll be okay soon!  Hahaha," say my conversation partners who are growing uncomfortable because I'm starting to scratch beneath the superficial and meaningless, and want to change the subject quickly.

"WHAT THE HELL IS 'SOON?'  WE CAN'T EVEN BEGIN TOILET TRAINING BECAUSE HE'S NEITHER WALKING NOR COMMUNICATING COHERENTLY.  DON'T TELL ME HE'LL BE 'OKAY.'  YOU.  DON'T.  KNOW," my desperation scolds.

But again, these are the hair-trigger knee-jerk reactions.  Nobody deserves that.  Not the people with whom I'm speaking, not myself, and definitely not the kids.  The kids don't deserve me giving up like this or giving in to the Dark Side of the Force.

Yes, I'll be frustrated a lot, and I may get frustrated because I'm feeling like I'm being shown my own inadequacies by the parents of typically developing kids who proudly and smugly seem to proclaim that they're all Normal.  Or that it does get exhausting trying to read the tone of the conversation and determine that those who are listening are not prepared enough to deal with everything I want to say, but have to keep bottled up.

But unless someone comes as straight-forward as to call my boy a "retard" directly, then they don't deserve my fury.  They're not doing this out of malice or superiority -- that's my own head filling in these gaps and attempting to rationalize a question that I can't answer.

It's unfair.  It's unproductive.  And ultimately, it's a waste of time.  This is not Ultimate Suffering.  This is not the Fire Swamp.  I can't be in the revenge business for so long that I no longer know what to do with my life.

My kids need a father, my wife needs a husband.  Not Batman (well....maybe that's not entirely a bad thing...).

Post-script:  Then I look at these faces and all becomes right with the world:

Regression? Or Normal?

Sometime last week, Henry must have had something occur that made him scared.  For the last week, he has not only refused to walk anymore, but also resisted standing.  If we put him in position to stand, he would be revving up and ready to take off before.

Now, he draws his legs up like he's afraid to stand.

Lori took him to the doctor, who didn't notice any obvious injuries.  I've surreptitiously checked out all of his muscles and joints, and he doesn't react to any touch as if it hurt.  So, like any 21st Century parent, what do I do?

To the Internet!  Which is, of course, a huge mistake all on its own.

I've gotten everything from toxic synovitis to the "onset" of autism (which, in and of itself, is suspect phrasing).  He is physically able to stand and jump -- that much is obvious whenever we put him in his too-small-for-him exercise saucers.  He just refuses to anymore, and seems completely gun-shy. Other Internetters have said that they've experienced this with their typically-developing children and that they got over it in a few weeks (!!!), with no known cause.

Another symptom that indicates a fear-based reason is that he seems very reluctant now to swan dive backwards out of my arms when I'm holding him.  Before, it was his rush, his adrenaline-junkie way.  Instead, when I leaned him back to begin that motion, he started clinging desperately to my arms to avoid falling backwards.

All I can think of is that he must have fallen or stumbled to where it may not have physically hurt him but mentally hurt him somehow.

So that puts us in a tough position.  Do we coddle him in the hopes that it goes away naturally and he regains his confidence on his own terms (with the risk that he won't and his physical development regresses), or do we act like Viper and Jester in "Top Gun" and keep sending Maverick up in the hopes that he'll get over Goose's death and engage?


UPDATE: Henry's OT and PT aren't worried about this.  They suggested that a huge series of rapid fire changes probably just overwhelmed the poor kid.  From me going back to work (when previously, I'd spent most every day at home with him), to switching bottles (he got the smaller 5 oz. bottles while we gave Evie his larger 8 oz. bottles so that we can increase her feeding), to potentially figuring out how to speak, to just the presence and increased awareness of a little baby in the house who's getting more of the attention that he used to get exclusively, and that he's approaching 2 years old probably all did it and something had to give.  They're fairly comfortable that he'll remember again when he's ready.

Consolidation

Just a blog update on this one, rather than any deep thoughts.  I decided to consolidate the kids' picture sites into this one so that there's just a single location for the blog and their month-by-month photo diary.  Maintaining some separate Tumblrs as well as this blog got to be a little too much of a hassle.

So both the Henry by the Month and Evie by the Month (had to change it from "Evelyn," since I'm no longer used to calling her by her full name) are now housed here on Blogger.

The Obligatory Retrospective

I've avoided subscribing to the seemingly typical "20XX was terrible, here's to hoping that 20XY is better" mentality as much as possible.  I think even during the transition of 2003 -- the year my father suddenly died -- to 2004, I either minimized it or at least was justified if I did succumb to that thinking.

Perhaps a bit overly optimistic, but I tended to latch onto the notion that the quality of a year is dependent upon perspective.  One could choose to focus solely on the challenges and trials, and when doing so, see the quantity of such negativity populating the year.  That would therefore make it very easy to write off the year as a terrible one, worthy of being forgotten.

Or, conversely, one could choose to focus solely on the rewards that came during the year, and therefore see the year as a success.  Maybe a bit too optimistic, and perhaps unrealistic because who truly has a perfect life?

Everyone has a blend of negative and positive aspects of their year.  In the words of one P. Rogers Nelson, "we have gathered here today to get through this thing called 'life.'" The quality of a year and how we view it is solely up to ourselves.  The year is what we make of it.

I don't think anybody would fault me for saying that 2013 was a pretty darn good year.  We welcomed our new daughter toward the end of the year, making Henry a big brother already.  I still have a job, I'm in pretty good health and take no medications, and my car still runs.

If I was to take that pessimistic "2013 sucked; here's to hoping that 2014 is better" track, I could latch onto the fact that 2013 was the year that both kids were diagnosed with Fragile X Syndrome, that Evie's early ultrasound showed a physical characteristic that was highly indicative of Down Syndrome.  That the pregnancy with Evie was not without its complications for Lori, or that Lori had to quit her job because paying for daycare for two children was going to cost about as much as she was making (and the implications that brings, of being a single-income household with two young children with special needs in today's economical environment).  That Henry's cognitive development is that of a 6 to 9 month old and he's at about 12 months in physical development when he's actually 18 months old.  That Henry could have died earlier in 2013 when he came down with H1N1 and pneumonia which put him in the hospital for four days, and that the bill for his care after insurance was around $5,000.

But that's not me.

First, I feel it unrealistic to hope that a new year is better than the previous.  A year is but a year.  It's a chronological series of events that neither hinders nor helps a person along in and of itself.  A year is not going to be better or worse in and of itself in response to my wishes in exclusion.

Second, I am not one to be satisfied in coasting along the timeline with the expectations that whatever happens was purely a result of external forces,  forces over which I have no control.  I think this in particular is the attitude that confounds me over that statement of "here's to hoping...." 

Don't hope.  Take.  Do.  Make happen.

Whether it's taking control or taking responsibility, I feel it less productive to hang back and wishing for success (whether out of some sense of helplessness or entitlement, I can't be sure which) as opposed to making it happen or at least weathering the storm by battening down your own proverbial hatches, then determining the next course of action.

So both kids have Fragile X Syndrome.  That might mean that Henry may not form coherent words until he's three years old, or that he may be diagnosed autistic in a little while, but so what?  What is going to change if I sit here and moan about it?  If I wallow in self-pity, the "why does this have to happen to meeeeeee?"  I'm certainly not going to be able to change his genes.

But it may also mean that Evie won't even be affected, considering the FXS hits boys typically harder than it does girls.  Or she could be severely affected; we have no way of knowing, and it's not like we can take steps to prevent or alter its manifestation.  We haven't failed, so why worry?  In this regard, the only way we can fail as parents is if we live in denial of the help that these kids will need.

I suppose in that regard, we can hope, but it'd also be unrealistic to let that dictate our actions rather than proactively taking the necessary steps to get the kids the assistance they need.  We could either hope that Henry and Evie reach developmental milestones, or we can continue to take them to MISD's Early On program to get the physical and occupational therapies, the specialized instruction, and guidance for them.

So we're down to one income.  But that's okay because I spent the bulk of 2013 preparing for it.  I switched our household finance & budget system from the Excel system that I'd used for close to 20 years to a more formalized software system that filled a significant gap that I didn't realize needed filling: how to budget.  Previously, I spent up every spare dollar we had, but also failed to account for several budget accounts.  That was why our income always seemed insufficient to meet our needs, even though our combined household income was just shy of six figures.

By comparison, we should've been swimming in money.  But we weren't because I wasn't budgeting correctly.  2013 was instead the year I got a cold wake-up call with regard to budgeting, and after admitting my error (which in and of itself was hard, considering my stratospheric degree of pride), I made that course correction which put us on a more comfortable path to reducing our income.

My mother's in good health and she's been a tremendous help in the family.  Lori's on the path to physical recovery from Evie's birth.  I ran three half marathons, one of which was a new personal record.

I'm still employed, got good grades in each of my classes, and we even paid off Lori's car (about 3½ years early).  2013 was pretty darn good, and 2014 is shaping up to be a good one as well.  I could moan about the amount of time, effort, and money it took to renovate the upstairs bathroom in December but the end result was a product of me doing it myself.  And a takeaway from that is that I learned how to lay tile and do a better job installing and patching drywall.

2014 started off with a leaking dishwasher and burned out sump pump....but I ordered a new dishwasher with cash, and replaced the sump pump myself.  I could have moaned about the cost of the dishwasher, or congratulated myself on managing our finances to the point where we can buy a major appliance with cash.

I don't own any of the 2014 NHL Winter Classic jerseys....but we're getting a new dishwasher.

So it's all perspective.

Sitting Up

Henry achieved his milestone of getting into sitting position from his stomach.

One of the features of Fragile X is low muscle tone.  This isn't the "muscle tone" of the fitness marketing industry that actually means "low body fat percentage achieved by wasting time lifting 5 lb. dumbbells."  The term "muscle tone" is derived from the word tonus, which is a state of contraction for the muscle.

FXS's neurological component means that Henry's muscular strength lags behind children the same age as him who aren't affected.  The nervous system has as much to do with strength as the physical size of the muscle.

Henry lacks upper body strength, which is why you see him crawling on the floor using his arms instead of on hands and knees.  But through the last few weeks of physical therapy, we've been slowly building his upper body strength, and the result is the above video.

I first noticed him do this last week when after a long crying bout in bed, I went to check in on him and found him actually sitting up in his crib.  This was significant because the typical milestones have this tabbed at around 6-9 months of age.  Earlier this week, when I saw him drag himself over to where I was feeding Evie then saw him sitting, I nearly cried.

The PT has clearly been helping.  He's getting an intense workout that we normally wouldn't have known about.  And as further aggravation with our pediatrician's office, it's a workout that he wouldn't have gotten through them, either -- they seem to be more content to cycle through well-baby visits and the occasional colds.

They're not equipped to handle special cases that fall outside the norm.

In fact, when we stopped by there this morning after Henry's PT session to ask them for a prescription for orthotics for his feet, they seemed ill-equipped to process the fact that we went to the county's early intervention program of our own volition rather than getting the prescription (because again, we wouldn't have gotten one because the doctors there don't seem to be on the ball about special needs).

So anyway, Henry has about a year's worth of physical development to catch up on, and then to keep up with the expected development for kids typical of his age.

But with moments like the video above and also this morning when he pulled himself onto his knees then onto his feet are the significant rewards.  I'm simultaneously overjoyed to witness these milestones as well as aggravated that we have to make such an effort, that we couldn't have had just a typical run of things with the kids.

All Too Easy

Although there's no official diagnosis, it's clear that Evie has torticollis, just like Henry did.  We noticed that her head tilts toward her left shoulder and she prefers turning her head over her right, which is a significant indication.

For Henry, it took an early intervention specialist at his daycare last year to notice it and to make the suggestion that we bring it up with our pediatrician (who never noticed).  We did so, and our pediatrician subsequently wrote a prescription for a referral to a physical therapist.  The therapy lasted about two and a half months, going from three times a week to eventually once a week as Henry's neck got stronger and more straight.

Since we're familiar with the symptoms of torticollis, we noticed it in Evie right away.  Which means we're going to have to do the same exercises with her that we had to do with Henry last year.

Because things have been so simple and easy so far that we just needed something else to worry about.

On a more serious note, here's the difference.  The left picture shows Henry's torticollis before therapy, and the right picture is after several weeks (though only soon after therapy ended and before he gained even more strength and flexibility in his neck to even out his head position).

Note not just the tilt of his head, but the shape of his jawline.  The tilt of the head flattened his face on the left side, and got to the point where even the shape of his eye was affected.  You can still see remnants of that misshapenness in the "after" photo, where his left eye seems narrower.

Today, his face is much more rounded, but if you look very closely, you can see that his left eye is still narrower than his right.

This is an awesome photo of him after he just woke up.  He wasn't very thrilled with me.

So we'll have to do a bunch of manipulation with Evie's head and neck now.  Whether we need to go to a physical therapist for her for this, I don't know.  But the 3-a-week is probably going to have to start, because we didn't have enough to worry about already.

Things I Took for Granted Before Kids

Finishing a whole cup of hot coffee.

"Hey, you wanna go get a drink?  I know we have some beer in fridge but....aw, let's just go!"

"It's 10 o'clock.  I think I'll get out of bed."

Evie's Here

Little Evelyn was born yesterday around 8:00am.  Her birth went much more smoothly than Henry's -- I think the records that the hospital had from Henry's birth (and what they did wrong) stood out so the staff took a little more care and caution this time.

But this beautiful little girl is currently napping across my stomach as I type on the laptop.  And I have to admit that, knowing she has the full mutation of FXS, I've caught myself looking for telltale signs since yesterday morning.

I also feel it's horribly unfair to her, but I can't seem to help it.  I look at her palate when she cries or yawns, I look at her ears. Her ears aren't as prominent as Henry's, and neither of them have the elongated face that's characteristic of FXS.

But when I do realize what I'm doing, I stop.  I can't condemn this little girl into a predetermined path just because I know too much for my own good.  Just as I can't predict how Henry's life will turn out, I can't shoehorn Evie into an overly cautious path just because of the medical information that floats through my head.

Just as I'm quick to criticize medical professionals for relying on statistics too much to determine a course of action or inaction, I admonish myself for doing the same to this little girl who's barely two days old.

I then remember to hang back and put away the technical manual on babies.  I give her a smile and just enjoy the presence of this little squeaky thing with the cutest cry that sounds like a baby panda.