Upcoming F2F Meetings

Friday, November 30, 2012

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Calling all locals!  The F2F Philadelphia Suburbs meetings for winter have been posted.  Most of them are in my neck of the woods because a) that's where most of my moms seem to come from and b) I usually get late (or post-deadline) RSVPs and need to be able to get to places quickly.

You can RSVP by email or through our FB page, where each event has its own entry.



December 2012
  • Morning Coffee
    • Thursday, December 6th
    • 9am-10am
    • Tabora, Main Street in Lansdale Borough
    • RSVP by Wednesday, December 5th at 5pm
  • Dinner
    • Parkside American Grille in Harleysville
    • Friday, December 14th
    • 7pm-9pm
    • RSVP by Wednesday, December 12th at 5pm

January 2013

  • Morning Coffee
    • Thursday, January 10th
    • 9:30am-10:30am
    • Tabora, Main Street in Lansdale Borough
  • Lunch
    • Wednesday, January 23rd
    • 11:30am-1:30pm
    • Molly Maguires in Lansdale Borough
    • RSVP by Tuesday, January 22nd at 5pm

February 2013

  • Morning Coffee
    • Thursday, February 7th
    • 10am-11am
    • Tabora, Main Street in Lansdale Borough
  • Dinner
    • Monday, February 25th
    • 7:30pm-9pm
    • Olce in Cedars/Skippack
    • RSVP by Saturday, February 23rd at 5pm

PJs, Cards, and TRU

Thursday, November 29, 2012

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I have no cool naming convention for this one... It's just a hodgepodge of the day.

Today was pajama day at school.  Miss M (very groovy lady that she is!) gave the kids hot cocoa with marshmallows and sugar cookies for snack, with a candy cane they got to bring home, and everyone (teachers included) wore their jammies! My kids are a bit ritualistic and know that their PJs are for night, so I figured it was a nice time to add a new pair to their wardrobe, telling them that the inagural wear could be to school for PJ day!  Bobby didn't love this idea (and put on regular pants when he got home, although he kept the shirt on), but both kids traded in their overnight PJs for their brand spanking new ones this morning! 

Normally, I'm not a matching twins type mom, but I couldn't help myself.  When the kids were tiny, they shared a green monkey sleeper.  Some of my favorite pictures are in that sleeper; I still have it.  Truth be told, I'm hoping this new little guy or gal will wear it too!  I went to Kohl's to troll for some cheap pajamas (man- those things are PRICEY! You sleep in them for goodness sakes!  I have sports bras that I use ALL-THE-TIME that cost less than a pair of toddler pajamas!) and, when my eyes saw these, I just knew... I knew I had to have them.  They were Carter's (just like the sleeper), with monkeys, and in red (Bobby's favorite color).  They were grown up style, with the button, collared shirt, and pants.  And they had both kids' sizes!  SCORE!!!  I washed them and had them ready for this morning.  Both seemed pretty jazzed that they matched and, over lunch, when I asked who had the best PJs in class, Maya said "Bobby and Maya- we had the same!"

***
I usually spend a fair amount of time on Christmas cards.  At one time, I made them by hand and really poured myself into them.  The last few years, we've done photo cards and I spend a few days getting everything together.  I'd started that process this year, but for some reason just didn't feel it. Then, I stumbled across boxes and boxes of cards, that I'd neatly signed "The Haytko Family", in with the Christmas decorations.

I used them.

I know... It seems so awful to not have photos or sweet letters or notes to everyone.  But I send out 175+ cards a year and having these seemed like fate... It saves me some cash, no doubt, but they do seem a bit blah for the season.  So, my apologies.  If you get a generic card and you're wondering if I turned into the grinch, I didnt.  I just didnt want to waste the cards I had (or spend money on new ones when I had these I could be sending).  Doesn't make it right, but I am thinking of everyone.  Really.  I'll put my energy into making a beautiful blog card for Christmas!  Then there will still be pictures and happy love for everyone!

***
Toys R Us.  How I hate thee...  I dont like big mega stores anyway, but Toys R Us has a special place of unlove in my soul.  I dont even know how it happened.  Maybe it was the whole wanting to be a part of the parent club and not being, and hating being reminded of that everytime I went to BRU or TRU for a gift.  Maybe it was feeling like a fraud when I registered at BRU.  Maybe it's the constant poor service at both TRU and BRU.  I dont know.  Suffice it to say, I'd rather be in a local shop or at a nearby consignment store.  Or, hell, even Craigslist!  But, the kids had received a giftcard, so I decided to go in and pick up a few things for them. 

As I'm shopping (and quickly, since I have to pick the kids up from preschool), I see something that makes my eyes go wide.  It's one of the wooden railway Thomas and Friends pieces.  Now, my kids love Thomas, but I'm not the crazy parent who spends $80 on a toy.  Sorry.  Make one out of cardboard, kids.  But I have the giftcard and I'm looking for something special to suprise them with.  There's this helipad thing with the helicopter and it moves.  Pretty awesome.  Normally, it's $60, but the sign says CLEARANCE!  Could this be?!!?  This box is a little ratty, but that's okay (I mean, they will rip it out of the box in 2 seconds); there isn't another one, so in the midst of parents trying to find the Thomas accessory their kid will love, I look again and see the sign: "CLEARANCE!!! was $59.99, now $34.99" 

On a regular day, I'd balk at $35 for a toy, but like I said, there's a giftcard.  So I take it.  And am feeling pretty good.

I get in the check out line and this is where I should have known to turn back and run from the store.  She is scanning everything (I had gotten Maya a baby doll and some accessories for it as her Christmas gift) and I made sure the doll was on sale, as it was supposed to be.  I'd already laid my giftcard on the register and gotten out my credit card for the little bit of additional I was expecting.  The cashier scans the gift card and tells me to swipe my card.  Only once I've swiped it, do I notice the amount.  It's $44.  "Excuse me, did the Thomas item ring up full price?  It's on clearance." 

She tells me it did but that she cant cancel the transaction and that I'll have to go to customer service.  Mind you, I hadnt pressed the OK button for my credit card and was about to hit the "NOITDAMNWELLISNTOK" button when she reached over and hit it herself

She gives me the receipt and I have to go get in another line to either return the item or have the price adjusted (and probably with a gift card, ugh!).  So I wait... and wait... and finally, it's my turn.  I explain to the clearly tired and unhappy clerk, and she calls for a price check.  And then calls for another one.  And (you guessed it) another one.  Because no one is coming.  Finally, I have to go with the person to show them the item and what does he say?  "Oh, I'm sorry; someone mismarked this.  It shouldn't be this one that is on clearance."

Of course they did.  Of course.

So, when I go back to customer service, where I now have to wait again, I tell the woman that I'd like to return it.  "Why dont you just keep it?  I'm sure your son will like it."

Hey, whether or not my son will like it isn't the point.  The point is I dont pay $60 for a toy.  We cant eat it or wear it, it's not my giving to the Church or charity, and it doesnt keep us warm or with electricity.  So, no.  He will like another toy (that isnt $60).

I could tell she wasnt thrilled about refunding my money.  I could also tell she was debating between refunding the $44 to my credit and giving me the remainder on a TRU giftcard.  I was ready for that, but at this part, I can say I was pleasantly suprised.  She refunded the entire thing to my card so, not only do I not have to worry about going back there ever again but I can find a nice Thomas item somewhere else.  Perhaps our local toy store!

But even with my love of local shopping, I wont be paying $60!

6w

3 comments
Wow... So, I took a plunge and put up one of those baby counter things.  I always liked the ones that showed the little baby/babies dancing in midair, but I needed one that would show the correct date as well as my scheduled delivery date (2 weeks earlier), so the one of the side won out.  It says 223 days to go. Less than 8 months... 7 months and 11 days I guess?

There are moments where it hits me that I'm pregnant.  Not just that, but that Peter and I are expecting a baby without cycle monitoring, fertility medications, ultrasounds, IUIs, and a doctor in the room.  That we just did what "everyone else" seems to do and this happened.  I mean, I know the mechanics of it all, but I'm still a bit shocked.

I was pleasantly suprised that I know when I ovulated and that I felt different early into the game; it gives me hope that I somehow am learning my body and that it is working normally.  Small things.  I'll take it!  When the ultrasound came up yesterday and, after checking for the heartbeat, Dr. Bailey called the date as 5w6d, I actually breathed a sigh of relief.  If I was 7 weeks, like the first day of my period would have suggested, I think I would have felt a bit off.  First off, like how did this happen before the MCM, but also, like how did this happen and I not know?  As funny as it sounds, 24 hours later, I said to Peter after that I was really happy that I kind of knew myself.  It even sounds dumb writing it, but it's true.

Dr. B. still seems to have some concerns, even with the TAC.  I know his TAC experience is minimal, which explains some of his concerns no doubt, but he seems to view it as similar to the Shirodkar TVC.  Dr. Haney, who placed the TAC, disagrees, and feels that the TAC is significantly better.  I'm sure hoping he's right; with Bobby and Maya in play, I can't even imagine bedrest or, worse, an extended hospital stay.  I refuse to consider the worse alternatives as well, which means that I'm hoping and praying for the "bionic cervix" that I've heard other TAC-after-loss moms talk about. 

From an emotional standpoint, I think I'm actually okay.  Pretty positive.  I'm trying to stay focused on doing the best I can, regardless of what may happen.  I can't control the future, so I've given it over the Great Spirit.  What else can I do?  I can stay healthy, be the best mom to all my kids that I can be, and stay focused on the positive.  Dr. B. seemed to think it was funny that I wanted to nail down a delivery date, and said he was happy to see me so optimistic about July.  But what else can I be?  If I think about the TAC not holding up, or not getting us to full term, I'll drive myself insane.  Why go through that?  If the TAC is going to fail, it's going to do it whether or not I'm happily looking forward to July or pacing and crying in my tea because I just know I'm going to lose this baby, too.  No point. We are happy, we are prayerful, and we know that, whether this child leaves us tomorrow, or next year, in a hundred years, that we were chosen to be his or her parents for a reason and that gift is such a blessing. 

5w6d

Wednesday, November 28, 2012

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It's official!  There is one baby with a strong heartbeat of 150bpm ticking away!  The baby measured on target with when I assumed I ovulated at 5w6d, which makes my startling blood work two weeks ago all the more shocking in how high the numbers were (for me).  I saw Dr. B., and we discussed a variety of things including my running, yoga practice, and scheduling my c-section date.  Mark your calendars; the hoped for entrance date of this little one is Wednesday, July 10, 2013.

I'll write more later, but I have so much to catch up on at home right now. 

The latest Baby Haytko, 5w6d

You Must Be Joking

Tuesday, November 27, 2012

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And so, the long awaited update to the saga of Bobby's special education needs.

If I wrote out posts of nonstop cursing, then this one would start with huge, shouty capitals with every F-word like slang I could muster and would end with the phrase, "REALLY???? YOU MUST BE F---ING JOKEING!"

But, it's not.  I'll try to be rational and normal (at least a bit).  But I'm still pissed.

So, in PA (and maybe elsewhere, I dont know), all children with a diagnosed special need or developmental delay are eligible for state insurance (either as their be all, end all insurance or in addition to insurance that you may hold for them; for ease, it's referred to as "MA" or Medical Assistance.  When the kids were born, because they were so early, they were also eligible for one year of MA, in the event any disabilities or special needs came up.  The hospital social worker handled the paperwork and the kids were approved.  We never used it because I didnt feel like we should (we had insurance after all); because, even had we wanted to, the pediatrician we wanted didnt participate; and because the kids never had any special needs.  After a year, it lapsed and went off my radar.  When Bobby began needing special assistance and our pediatrician diagnosed him as "developmentally delayed" followed by the psychologist's diagnosis of PDD-NOS, we were advised to get MA.  The IU asked us to, so that some of their costs could be reimbursed (since the service is "free" and paid for by school taxes, etc), and we were advised by a friend in the system to do so to expedite Bobby's services.  I was also told that things like additional speech, additional OT, a personal aide for school, and even behaviorial therapy could be covered.

Stupid me!  I actually bought into that!

After several conversations that have included me being told that a) Bobby cant use MA because he has other insurance, b) that Bobby can use MA but only if we drop our pediatrician and take him to the one that MA assigned him (since ours doesnt participate) but even then, there's no guarantee he'd get the services he needs (like speech, etc), and c) that if I want Bobby to have speech or OT, I will have to drive him an hour+ away for services because there is no one in our area who will provide them.  (Really? An hour each way plus the hour for service?)  One woman, who clearly wanted to be helpful but had no idea how to be, told me that maybe a nurse could help get care at home for him, so she would have the nurse call me.

I had that conversation this morning and what a waste of my time.  First, she asked me if I had contacted any autism foundations.  Well, I have looked into them, but it's not like they are going to provide services!  She explained that a lot of people dont realize they can find resources online.  Okay...  I get that.  And, perhaps if I hadnt been getting the runaround, I wouldnt have had the internal dialogue I was having, but come on... I've just spent more of time repeating the same thing that I've told 3 other people, only to have you ask me if I have gone online and looked up autism in Google???  Really??? 

After being told that home based services were out of the question because Bobby isn't an invalid, I then had to explain to her why a child might need speech or OT services, then explain that OT and behavioral therapy are not the same thing (and why), and then sit while she told me that maybe all he really needed was a shrink to talk to.  If he talks out his problems to a therapist, he might not have any behavioral issues anymore.

REALLY? HE HAS A SPEECH DELAY.  HE CAN BARELY TALK TO ME AND HAVE IT UNDERSTANDABLE, LET ALONE A THERAPIST.  Yes, his behaviors can often be traced back to a lack of communication and understanding, but HE CANT TALK LIKE A 3 YEAR OLD.  Hence back to why he needs speech therapy...  And the circle continues.

At the end of conversation, I felt like I was more informed about the types of therapies I was talking to the nurse about, and that, as I'd feared, this was all just a waste of my time.  The combined hours I've spent talking to these people I could have spent talking to our insurance, who actually has an idea about what I'm talking about and who is still (cue cursing) debating on whether or not to cover speech therapy. 

But let me not forgot the other fun part of therapy negotiating!  The IU...  Based on the report from the school, Bobby is doing well with the BSC and SEIT who are coming to see him in class, so that is good news.  Really happy about that.  Speech and OT?  Nada...  So, I sent an email to the IU explaining that if, by December 10th (which is 3 months after B's 3rd birthday), all of his given services are not in place, then I am going to start contacting whoever will listen and complain.  I always hated with patrons contacted their local officials, congressmen, etc, to complain about the library system or the state/local agencies they were pissed at, but it got things done (sometimes even when things shouldnt have been).  Enough's enough.

An OT contacted me yesterday and says she can start on Thursday.  I left her a message to confirm, but amen.

An SLP?  Nothing... And this is the service he needs most!  Not to mention, they still havent forwarded me the psychological evaluation yet. 

What sucks so much is I'm still hoping they will turn out like Early Intervention, who were wonderful and helpful and did everything they could... But the IU is shaping up just like the other special needs parents I've talked to told me they would.  To the point that I know several parents, who have kids with serious issues, who have completely walked away from the (sometimes nonexistent) IU services they were promised would help their child.  It's sad.

This entire thing, however, makes me so incredibly grateful for the outstanding school administration and teachers.  In the nightmare that this has been at times, those women are out of this world.  After Bobby's diagnosis, the principal emailed me to tell me we were in her prayers and to offer her support.  His teacher continues to go above and beyond in making every day a good experience (and a learning one) for Bobby.  When Peter and I went in for that Thanksgiving party (and I'll have to post the video), the child who was there, was not the child I thought I'd see.  Bobby, while clearly not like every other child, was way more adjusted that I could have imagined.  With the support of the teacher and classroom aide, as well as his other aides, he continues to improve and get better.  Which is such a blessing.  He wants to be there so much; knowing that he can be there and work up to his potential makes it so worth it to fight for everything he needs to get there.

5w5d

3 comments
Today is the first day in several that, although I still feel nauseous all day and want to leave whatever I have eaten (or not) in the nearest waste basket, I have had some energy back.  I had to force myself to run last night (I was just so tired) and the 3 miles felt like 10, but I did it.  I took a minor spill, but no harm, no fail, and made it home in time to sludge through making dinner no worse for wear.  I dozed on the couch before finally being able to pour myself into my nice warm bed (I'm SO cold all the time that poor Peter has to suffer through a sauna topped by a half dozen blankets... I just can't stand it!).  This morning, I woke up at the usual time (and to snow!) but after making breakfast for the kids and sending them off with kisses for school, I actually felt like I could do something.

After putting away three loads of laundry (yeah... I've been a slacker...), I stripped all the beds and washed the linens.  I straightened up the kitchen and living room, and still had a bit of time to make some calls and respond to some emails (my inbox looks pretty awful right now... anything that isn't priority is pretty much just sitting...and sitting... and sitting...)  I even wrote out a list for the errands I need to do tomorrow (because my brain is turning into jelly).

But I have energy! Okay, I'm tired and I want a nap right now, but I had energy this morning!  Which gives me hope that it will come back to me in the coming days (and I wont have to wait until week 13 or 14 for it) and that, fingers crossed, Mr. Tired's friends, Ms. Nausea and Miss Hurl (because, really, who would marry those two!), will be taking their leave as well.

5w4d

Monday, November 26, 2012

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I asked Peter today if I was always this sick and tired when I was pregnant before.  Honestly, I dont remember.  I know I had a touch of morning sickness, and that I felt sleepy after a long day of work, but this entire, ready-to-pass-out-10-minutes-after-waking-up and all day nausea (and, as of yesterday, puking) extravaganza seems a bit much from what I am used to.  I realize I wasn't chasing after a pair of three year olds at the time, but still... 

So, the tired.  It's like a bone deep, been up partying all night type of tired.  By the time the kids are bathed and in bed, I've already dozed for part of the evening.  If it wasnt for trying to keep up with the hurricane during nap time, I'd be sleeping then too!  As it is, I think I may have the health department just condemn the kitchen post lunch and use the two hours or so that the kids are sleeping to actually crash, dishes, floor, and laundry be damned.  Probably not, but it's a nice thought!  Thankfully, I am sleeping the sleep of the dead at night.  Other than getting up to pee every few hours, I'm blissfully asleep.

Until 5am. 

Apparently the baby enjoys running because I am raring to go before the sun is.  The fact that it is dark and cold has been keeping me in bed, but since I am so tired by the time Peter gets home, I'm thinking that I might want to just go ahead and get my butt up so that I can run while I still want to!

And then there's the nausea.  Holy goodness.  I know this is a great sign, that nausea is a sign of high progesterone and the added hormones, so I'm thrilled.  (I'm thrilled about the tiredness too, another good sign, and I'll take all the good signs I can get!).  But I hate the feeling of throwing up (which is beat only by that feeling of wanting to throw up and not).  I've had all day nausea for the last few days, and yesterday was apparently the day when puking added in.  Fun times.  Today, poor Maya woke up to my pyrotechnics and didnt look amused.  When I tried to say I'm okay, I had to stop mid sentence and head back to the bathroom.  Yeah... I'm pretty smooth. When I came out, she was shaking her head.  Poor kid. 

***
Yesterday, Peter and I went on a date and saw the latest Bond flick, Skyfall.  Aside from the fact that it was 2+ hours of yummy Daniel Craig (which is always a plus during this phase of my life), the movie was really quite good.  Without giving anything away, I can say that I think it really sets the entire 007 franchise up in a good place for future movies, and really has completed what the previous two movies set out to do when they restarted Bond from the beginning of his commissioning as a 00.  So, all in all, pretty cool.  And I get this funny line out of it.  When we were standing at the concession line and I was lamenting the cost (really??? $6.50 for a "small" popcorn and $6.25 for a "small" soda???) and the several combos (kid combo, senior combo), I asked Peter, "where is the pregnancy combo?" since I had already vacilated between pretzle bites, nachos, or the overpriced popcorn.  (Who am I kidding? It's all overpriced!).  Without missing a beat, he said, "For $20, you can get whatever and change your mind as many times as you want."

Nice.

***
The kiddos are doing well.  Bobby seems to always get a runny nose and some congestion whenever the weather changes a degree or two.  Our recent descent from fall into winter temps is no exception, and my sweet little guy has more snot that a St. Bernard and woke up this morning with his chest rattling.  He seems happy, though.  Other than the runny nose being wiped every hour, he is his cheerful self, playing and laughing and eating, so I don't think he's sick in the general sense of the word. Which is great.  But it does afford me some extra snuggles (when I'm not being sick), so that's a nice thing. :)

***
I think I might put a sign on the door that says "If you are visiting between 1pm and 4pm, please dont knock or ring the doorbell.  I assault people who wake my kids up from nap."  I had no sooner put the kids down at 1:15, spent a few minutes hoping I wouldnt puke up my soup, and sat down on the couch when the silence of sleeping babies was shattered by the doorbell.  I opened the door and it was the gutter cleaners.  Of course.  The kids didn't wake up (thank God!!!), not even when it sounded like the roof was caving in as the guys cleaned.  I, of course, couldnt sleep, but they did, and for that (and the 2.5 hour nap) I am grateful.

***
I love living in a neighborhood.  Our neighbors are really awesome, and I just love everything about our little town.  What I don't love?  The letter I got in my mail on Friday.  An 'anonymous' neighbor from 5 streets over mailed a letter to the Borough, cc'd us on it, and complained that our shrubs were overgrown and violating Borough laws.  I checked it out and didnt agree, so I did what any self respecting homeowner would do.  I emailed her (she didnt give her name or address, but did put her email address in the letter) and told her that I found it a bit rude that she didnt come to me directly, then I cc'd her on an email to all the Borough personnel she'd addressed in the letter, telling them that I welcomed their visit.  One of the guys came out today and laughed that he couldnt see anything wrong with our shrubs or trees, and that he was sorry for the inconvenience.  Because I feel like a two year old, I totally want to email her and say "na na na boo boo" but my grown up side is winning out.  But still... Really?  Who does that?  I run through this town all the time and see some pretty awful, inconvenient lawn/tree issues; if I ever had that much of an issue, I'd go up and knock on the door!  We're a small town in a nice little suburb.  Why not just talk to your neighbors?  Especially since we are outside a fair amount of time, and would welcome the interaction with new folks?  I guess, in this day and age, you just dont know who you might encounter and perhaps an anonymous letter is the only way you can feel safe, but it makes me sad.  But, hey, my shrubs and trees are in compliance with whatever laws there are, so that's something! (seeing as I'm the one who trims them and does our yard work!)

Oversharing (Pregnancy Mentioned)

Saturday, November 24, 2012

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I have sat and looked at a blank Blogger scream at least 50 times in the last few days, but I just haven't been able to sit down and really type what I want- what I need- to say.  I've told Peter that I will... eventually.  I've given myself goals or milestones or whatever to force myself to do it.  But, all in all, I know it has to happen at the 'right' time.  I just can't figure out what the right time is.  More than anything else, though, I don't want the right time to slip me by.  And, since I am typing and filling the screen, I suppose now might very well be the right time. 

I'm pregnant.

I'll wait while you pick your mouth up or shout explicatives or whatever (that was what I did, truth be told).  I'm early, somewhere between 5 and 6 weeks, depending on if you base it on when I think I may have ovulated (5w3d) or the first day of my last period (6w2d).  I should find out for sure on Wednesday, when I see Dr. Bailey for my first prenatal appointment and, I'm assuming, my first ultrasound.  Thus far, he considers me the latter (6w2d) since I don't know for sure when I ovulated, only that it had to be after the marathon (October 28th).  We were intimate the 30th-2nd (not the entire 96 hours, you dirty minded folks) but, clearly, that was my "window".  But we shall see...  As Sarah says, "it only takes once" (which, I'd debated naming this post).

I started writing in a pregnancy journal on November 17th but the journey actually starts on the 13th- scratch that, it starts right after Halloween, when I had a dream about Daniel Craig (in case you've forgotten, Mr. Craig is quite the object of my pregnancy dream fantasies). 
If only I were Miss Moneypenny... They would never have to give me a raise!

I actually mentioned to Peter when I woke up that I had this dream and he chuckled, "What? Are you pregnant?"  We laughed it off. 

Peter and I had decided that we would, from after the MCM until Dec. 31, 2013, have the year+ of watching the TTC train.  Neither of us had any desire to get back on the train and its hairpin turns of crazy and hormonal wackiness, but we also have always wanted a huge family.  We'd come to terms with being happy with our present family, but figured, post-TAC, we could at least pay attention to my cycle days, possible ovulation (my cycles are anywhere between 28 and 32 days normally), and, if we were up to it, you know...  But we weren't going to plan sex into the calendar, seek out treatment or medication, or anything like that.  If, by the end of 2013, we weren't pregnant, then I'd move on with getting to baby gear out of our storage and on its journey elsewhere.  I'd already sold off some stuff, but still have a fair amount.  Although we'd discussed this, the whole "it only takes once" or "pregnant after your first cycle trying to conceive" phrases were not anywhere on our radar.

Back to my dreams... So, no more D.C. dreams, and then we had the Lemon Run.  Normally, I'm not a pre-run eater.  The idea makes me sick to my stomach and my body works better when it is running at least 2-3 hours post food. But, on that Sunday, my body didn't get the memo and I was hungry.  No, I was HUNGRY.  I scarfed down some fruit and a bagel with cream cheese and some juice.  After the race (during which I felt more  tired than usual, which is saying something since I run 5 miles in my sleep), I ate an energy bar in the car and would have attacked the snacks I'd packed for the kids except that they wanted them. :)  I cooked brunch and our team settled in around the table to eat, which I did (and like I'd been starving for a month).  After cleaning up, it was the couch.  I thought I would fall over.  I was freezing, buried under blankets, and (thanks to the fire) it was a scorching 80 degrees in the house.  Peter and Sarah both looked at me like I was nuts as I whined about being cold.  Sarah raised an eyebrow, "Are you pregnant?"

Combined with my tired/cold/eating frenzy on Sunday, I was starting to wonder the same thing.  I was so tired that I'd lay in bed but it felt like my body was electrified and it would take forever to drift off.  My runs were slower than usual and I just felt deeply tired.  I was thirsty (for water, which is not my drink of choice) and when I'd gone out with some girlfriends the Saturday before the race, my margarita tasted off.  My period was due on Wednesday; I knew I had a test so, I reasoned, if it wasn't there, I'd rush it along by testing.

Monday, I started to spot (albeit brown) and thought, "Ah! Stupid infertile, thinking you might be pregnant."  I got all ready to go for a full blown, Aunt Flow adventure, and went about my day.  That evening, I met up with a blogger and friend who was in town and, once again, my drinks (margarita and wine) tasted off.  Then the big deal: when I got home, I still had no period.  The bigger deal?  That night, Daniel Craig was in my dreams again.  I woke up Tuesday morning with one thought: find the damn pregnancy test.

As soon as the kids were at school, I came back home and rooted around in the hall closet until I found a Dollar Store test (from a batch I'd bought back with my last miscarriage, in 2010).  I peed and paced for 3 minutes.  Then I picked it up and proceeded a litany of "WTF"s and "No way"s.  With shaking hands, I called Peter.  "There are two, f---ing lines!" I shouted.  The poor man was probably wondering what store I'd gone into and why I was so ticked off about waiting in lines, but I finally explained that I was talking about a pregnancy test. 

For me, the two lines is a big deal, and a rarity.  I decided to go to the local drug store and buy a "real" (aka Name Brand) test.  Then rush home and take it. 

Positive.

Yep, that is a real 2nd line there.


Holy crap.

I called my GP, since I was due to have some blood work done anyway and asked her to add an hCG test to the mix.  With my history, she did so and I gave blood on Wednesday.  My period was due and I was hopeful for maybe 25? 30? 40?  With Nicholas and Sophia, 13 days past ovulation, I was 65.  With Alexander, at 14 days post,  I was 40.  Bobby and Maya were my rockstars with a 189 at 14dpo. My miscarriages that hung around for bloodwork never rose about 50.  On Thursday, Dr. S. called me personally: 109.

I nearly puked.  I was so suprised that I think I may have stuttered through the "Are you serious" that I no doubt asked her.  I repeated the test on Friday and early Monday morning, one of my practice's nurses called.  The result? 265.

I had hoped for 200+.  I'm not usually a double-in-two-days sort of girl.  I'm one of those 72 hours sort of girls, so really, anything over 190 would have been a good sign.  265 blew me out of the water.  After thanking the nurse, I called Dr. B's office and made an appointment, which will happen in 4 days.

I emailed Dr. Haney at UC, and he said that he felt like things would go well for us.  I'm in great shape (better shape than I have been since high school and college), and my IC was corrected by the TAC, so...  As Sarah says, post-marathon me has yet to be written.  Who says this can't be normal and easy?  If for someone else, then why not for me?  Then, Dr. B. left me a message of congratulations, so with both OBs on board, waiting is really the name of the game.

Suprisingly enough, I'm not really nervous.  Once the initial shock wore off (if it has, completely), and I settled into the news after a few days, there's really a lot of hope.  Still shock, but hope and faith that either this journey will be different or that, if it ends with sadness, we have enjoyed every possible moment.  There have been some shocking moments, too.  In the process of trying to figure when to tell the kids and even how to tell them, Maya (who has been peppering me with the requests of "Can we have a baby?"/"You should have another baby"/"I want a baby") walks up to me and puts her hand on my belly, and says "You have a baby in your belly."  Maybe she overheard us, or maybe she just really is that good.  There's a light in her eyes that tells us she's been watching the world turn for centuries and sometimes, she turns it on us.  Creepy at times, no doubt, but really special and magical too.

A cute Maya story: we were out running (well, I was running and pushing her in the stroller), and she informs me that she wants a baby sister.  Bobby, she says, wants a baby brother.  Well, someone should be happy, regardless.

From a symptoms standpoint, there's a fatigue when I'm running (regardless of the distance) that has me taking 20 second walk breaks if I need them, a balance of hunger and nausea that sees me only able to take in 1600-1800 calories without wanting to puke, the general morning/all day feelings of wanting to hurl which has led me to a new love of 7up (which is what my mom always gave us when we were sick, so I'm thinking it's a mental as well as a physical 'feel better' response), and a desire- no, a need- to sleep whenever possible.  Needless to say, there was no pigging out at Thanksgiving dinner since I could barely convince myself to eat the servings on my plate!

Cravings wise, I have to have a mini-bagel with cream cheese and protein (lox, bacon, or turkey) for breakfast, lunch is a turkey sandwich with either chips or soup, and dinner is whatever.  Snacks are either more bagel/cream cheese combos or salty things, like pistacios.  Love those...  Lots of water, too.  I can handle coffee in the morning, but just 8oz (with 2tbsp half & half, and 3 cubes of sugar, instead of black as I normally love it).  I'm easily able to take down 2-3 cups of pregnancy tea, and I've been drinking a lot of water (with ice).  All in all, it's pretty low key (except for the fact that I dont usually want to eat.  I suppose it's a good thing that I'm carrying a little extra, and that your 300+ calorie increase is needed most in the 2nd and 3rd trimesters.

I refuse to worry about getting to the end.  I refuse to have the fear that has been such a part of my pregnancies.  I know that it is going to be tough to have a pregnancy that is day-by-day my pregnancy with Nicholas and Sophia; I know that following their timeline and the entire month of February is going to be a waking nightmare at times.  But, I have only this life to live.  I have only what I can do.  I know I am making the right choices, and that I can do no more.  If history has taught me well, it's that this is all that I can do.  Worrying about what might happen or worst case scenarios wont stop them from happening.  It wont make us better prepared; we're war tested in that arena.  So, we misewell enjoy ourselves!  Nothing worth having comes easy, and you can't have the ultimate joy and love without putting yourself up against the ultimate risk and pain.

So, here's to the journey.  And to the walk that we, as a family this time, seem to be taking around the labyrinth.

Check out Visembryo to find out what's going on a 6 weeks


(Note: for pregnancy related posts, since I know there are folks who may be troubled by reading about it, I will title them with the w/d format (i.e. "6w0d", etc) to denote clearly that the subject matter will discuss pregnancy.  It may discuss other things too, but pregnancy will be mentioned and discussed.)

Happy 4th Birthday, Alexander

Friday, November 23, 2012

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Happy Birthday, my sweet Alexander. 

It's amazing to think that it's been four years since you born.  Four years since I held you in my arms, since I smelled you, since I kissed your little forehead.  Four years since I prayed for a miracle beyond all others.  Four years since you kicked and moved and breathed.  Four years since you traded in your earthly life for one on the other side of the rainbow.

It could be four minutes to me.  Sometimes, I swear I feel your presence or hear the laugh I'm sure you would have had or see your eyes twinkling.  Sometimes, I just know that you are.  Like, when I went running yesterday and, in broad daylight, a light flickered to life four times before turning off.  Like, when I was pondering what to make for your birthday and the answer was just... there.  Your voice was just...there.

For the last few days, Maya and Bobby have been excited for your birthday.  They know several versions of the 'happy birthday' song, and Maya informed me twice yesterday that we were going to sing to you.

This morning, your siblings were raring to go for Mass, which is something, considering it feels like we are always running to get out the door!  We went to the 8:30 at SMG, which was said with your intention, and then came home for brunch.  We didn't have fruitloops :) although there were fruit loops pre-church! :)  I made two quiches (turkey & jarlsburg and sundried tomato/pepper/feta), panckakes (buttermilk and GF/DF chocolate chip), fruit salad, and bacon.  (Don't worry, Bobby ate enough pancakes for you and Maya made sure to take in enough bacon for the both of you!)  Afterwards, we decorated our Christmas tree. 

For your dessert (and we did sing happy birthday, after I confirmed to Maya that you can still hear her in heaven), I made a DF/GF pineapple upside down cake, Maya maid some delicious vegan peppermint bark, and I vanilla iced some cakey brownies.  Bobby and Maya loved those best of all.  I think you would have too.

Four years old... You'd be a big helper, quite the talker, in 3 day a week preschool.  You'd love to play at the park and enjoy running around the soccer field for your little peewee team.  You'd be... well, you'd be you.  Perfect and wonderful. 

Here.

You are here.  Not as I'd thought or ever expected, but here nonetheless.  I'm grateful for that.  For having you in my life.  For being your mother.

Four years... It's so short, yet so long.  Long enough that I've come to terms with not having you in my arms.  Short enough that I still remember the way you felt and long for one more hug.  Long enough that I've accepted you were never meant to be a child of earth.  Short enough that the pain of that fact still cuts through me on a daily basis.  Long enough for the tears to have subsided but short enough that I still feel them on my face. 

Short enough that the ache is still there but long enough that I know it will always be...

Oh, Cuddlebug... Looking at your pictures today, remembering you while laying next to your Daddy, saying your name...  Remembering your cute little button nose and the way you kicked during your labor...  Remembering the way you snuggled into your Daddy's hand, curled up, and fell asleep... Forever.  Four years.

I love you, Alexander, and I miss you- every second of every day.

Happy birthday.  Happy, happy birthday.
Love,
Mommy

Musings on World Prematurity Day

Monday, November 19, 2012

2 comments
I didn't 'miss' Prematurity Awareness Day on Saturday, I just wasn't able to get to my computer.  But, as usual, I always have something to say. :)  (You can click on previous years for my other musings on the day: 2009, 2010, 2011)

***

For a lot of people, November 17, 2012, would be just another day.  Wake up, do what you do, go to bed... Rinse, repeat...  But for those of us who have had a premature baby (or 5...), World Prematurity Day is a day to remember, to educate, and to hope- to hope that, one day, 1 in 8 babies won't come too soon.  To hope that, one day, prematurity will be sorrow of the past and that every child will get a full term delivery.  It's a day to petition our governments to fund research into premature labor, and to raise public awareness of the importance of NICUs that can help the youngest of babies. 

It's a bittersweet time for me.  Prematurity, at its core, is bittersweet but, for us, this is a time of year that brings out so many emotions.  Four years ago, we were struggling to hold onto Alexander, begging for one more hour, one more day... Pleading for his little life and, tearfully, holding him as he slipped from this world into the next.  Three years ago, we were bringing Bobby home, followed shortly thereafter by bringing Maya home, from a 9 week NICU stay, a stay that saved their lives.  I'm grateful that, even at 27 weeks, our youngest children were able to have a fighting chance and that, 3+ years later, they are still fighting the good fight.  But for our 3 oldest children, their fight was a short one that ended because of their prematurity.  There's no one to blame, but there is a common evil to fight.  The battle against prematurity is one that we can win, and one that we, as a nation and as a world, should take up arms against.

Most people still have the preconceived notion that premature babies are the result of poor prenatal care, bad maternal behavior, drug use, etc.  Regardless of the reason, the baby is not to blame for negative choices that result in prematurity, and for them, we must seek and fine answers.  But it's not just about those babies.  There are plenty of children born to mothers who did everything in their power to go the full forty.  Mothers who took their prenatal and made their appointments, who lived healthy lifestyles, who tried and hoped and prayed, and who either comforted their babies behind the walls of incubtators or buried them beneath their tears. 

One in 8 is too high.  Truth be told, 1 in 1 million would be too high.  Perhaps we wont be able to conquor this beast today or next year or in the next 1000 years.  But we have to try.  We owe it to every child who has died, to every child who has struggled, to every parent who knows the cost of prematurity- those who brought babies home and those who didnt- to keep looking and to keep fighting for an end.

Misplaced

Tuesday, November 13, 2012

8 comments
Even now, 30 years later, if you ask my parents to tell you one of the most terrifying times of their lives as parents, it was when I was a toddler, 2-3 years old.  We were shopping in a K-Mart and they ended up at the ends of 2 aisles. As they met up, they each realized that the other thought I was with them.  I'd been looking at the toys and then, suddenly, no more Michele.  Frantic, they searched up and down the aisles, calling my name, to no avail.  Finally, a voice over the PA system asked the parents who were missing a child to come to customer service.  They flew to the front of the store.

A well meaning patron had picked me up as I toddled behind one of them and, thinking I was unattended, had whisked me off to the manager.  In a few moments, I was reunited with my parents and the world began to turn on its axis again.

I'd often thought, in my adult life that, while losing a child in that scenario was awful, the worst thing was losing  a child.  Having gone through that, I never thought I could possibly find a worse experience.

I was wrong.

Last Friday was a beautiful day.  Just beautiful.  After I put the kids to nap, I texted my mother-in-law and invited her for coffee on the deck.  We sat and enjoyed the sunshine, listening to the noisemaker pour through the monitor.  At some point, Bobby woke up and began to sing.  When he quieted, I went inside to check on him.  Walking down the hall, I pulled back the curtain that I use to cover the light from the rest of the house and blinked. His blankets were pulled back.  His bear was against the pillow.  Bobby was gone.

The house was silent, but I tore back towards the living room, screaming his name, oblivious to waking Maya up.  There was no sound.  And then I saw it: the front door, open... the screen door not quite closed.  I knew that I'd closed and locked the door.  And now, it was open.  The nightmare of every parent came roaring to life.

By this point, my MIL had rushed in after hearing me on the monitor and said she'd search the house and stay with Maya.  I was out the door, checking the yard and running to the street.  First to the busy road that borders our house- no Bobby, our neighbor raking the leaves.  Secure that she would have grabbed Bobby had she seen him, I took off in the other direction, towards the schoolyard and church park we visit.  As I'm screaming his name, all sorts of scenarios began to play out.  what if a dog... what if a pervert... what if he's hit by a car...  At some point, the realization that the death of a child might not be the worst possible thing hit me.  It was a sharp pain that was so breathtaking, I had to throw it from my mind.  I would find him.  There was no choice.  I would not go back home until I had him in my arms.  As I approached the first block, my eyes immediately saw his green Percy underwear sticking out from his brown pants as a stranger woman carried him towards the sound of my voice.  He was jabbering and playing with her hair.  This kind stranger had found him and another kind stranger, riding his bike, had called the police to report this young child, without shoes, wandering the neighborhood alone.

I've heard parents say that, once they've found a misplaced or lost child, they are overcome with anger or feelings of wanting to shake some sense or some other phrase.  But the only feeling I had was relief.  I just wanted to grab him and know that he was real, that he wasnt some mirage.  As I crumbled at the woman's feet and took him into my arms, the tears began to flow.  I was so grateful that the Universe had smiled on him, that his Uncle was watching over him extra special that day (since Bobby was wearing his Giants jersey), that his siblings were making sure he wasn't afraid.  I was so grateful that Peter always reiterates on their walks together that they cant cross the street without holding hands and that, instead of just walking aimlessly, he had turned and stayed on the sidewalk; hopefully, had no one found him, he would have made his way back home by walking that square.  I was just so awe struck by the grace of God that my son was safe.  As a friend of mine said later, now I could truly understand how the Virgin Mary must have felt.

Awful.  She must have felt awful when she couldnt find her 12 year old on the caravan.  Awful and then some.

After profusely thanking our neighborhood good samaritans, I walked home with Bobby, unable to hold him close enough.  Arriving, my mother-in-law had called the police and, just after the canceled the call, a young officer rang the doorbell and took a statement of what happened.  These things happen, he said, reassuringly.  Hell no... I cant imagine a plural event.  Once was more than enough.

In the grand scheme of things, this entire scenario took maybe 5 minutes, from the time I found him missing to the cop at our door, but it was the longest of my life.  The most gutwrenching.  The ones where I realized I would rather die a billion zillion agonizing deaths than ever have a moment like that again. 

D-Day

Monday, November 12, 2012

5 comments
This morning, a very lovely (and young) psychologist came to our home.  She was really pleasant and lived up to our phone conversation.  She spoke with Peter and I, was very attentive, and truly tried to get a good picture of Bobby.  She spent time trying to get to know him one-on-one and then watched him as he played during playgroup. 

She was very pleasant and I am very glad that she opted to come to our home because there is no doubt in my mind that she got the full Bobby experience for all the good and bad, and that she saw was a lovely, fun little guy we have on our hands.

A lovely, fun, wonderful little guy who now has a black and white diagnosis of PDD-NOS.

In case you are unfamiliar with PDD-NOS, Yale does a great job of explaining it:
Pervasive Developmental Disorder, Not Otherwise Specified (PDD-NOS) is a 'subthreshold' condition in which some - but not all - features of autism or another explicitly identified Pervasive Developmental Disorder are identified. PDD-NOS is often incorrectly referred to as simply "PDD." The term PDD refers to the class of conditions to which autism belongs. PDD is NOT itself a diagnosis, while PDD-NOS IS a diagnosis. The term Pervasive Developmental Disorder - Not Otherwise Specified (PDD-NOS; also referred to as "atypical personality development," "atypical PDD," or "atypical autism") is included in DSM-IV to encompass cases where there is marked impairment of social interaction, communication, and/or stereotyped behavior patterns or interest, but when full features for autism or another explicitly defined PDD are not met. It should be emphasized that this ''subthreshold'' category is thus defined implicitly, that is, no specific guidelines for diagnosis are provided. While deficits in peer relations and unusual sensitivities are typically noted, social skills are less impaired than in classical autism. The lack of definition(s) for this relatively heterogeneous group of children presents problems for research on this condition. The limited available evidence suggest that children with PDD-NOS.

I can't say that I am suprised.  The PDD-NOS diagnosis is the one I felt closest fit him when I was researching.  It's been clear to us for a while that he needs help and is struggling.  He is clearly delayed and needs extra help.  We are so very lucky that we have a supportive network of people who know and love him, and want to help him.  I couldn't help but think how lucky are we! when I read the response of his preschool teacher to diagnosis: "This changes nothing. Bobby's still Bobby, it's not like now he know's he's been diagnosed and he'll start acting differently...or at least I hope he doesn't because I've really grown to love that little guy!"

The diagnosis and label dont change Bobby.  PDD-NOS is just a part of who he is. It's a way for us to help him get what he needs.  It's a way to explain some of his challenges without offering excuses for his behavior.  He's smart and he wants to succeed; as long as we believe in him, I know that he will believe in himself.  If we give him the tools to succeed, he will succeed and, one day, he'll find and get those tools on his own.  I have no doubt about that.

The road ahead will be hard for him; it breaks my heart to know that there will be struggles and there will be battles I wont be able to fight for him (or even help him fight).  But he's still perfect in my eyes and he always will be.  Whatever comes, we will take it and we will do so together.  This isn't the worst that could happen; it would be far worse to imagine a world without him.

They were born on 09/10/09; today is 11/12/12.  Seems like the world likes to not have a linear 9/10/11 or 11/12/13 for us for these big deals. :)

Sharing Robert With the World

Friday, November 9, 2012

1 comments
Okay, so the Philadelphia area isn't the world per se, but you get my drift!  Last night, Peter and I were fortunate to be able to bring more awareness to the Alex's Lemonade Stand Foundation and to Robert's fight with neuroblastoma.  A local reporter met me at the LC track and then came back to our home, where she saw pictures and talked to Peter and I.  I was so proud of Peter; I know it was hard, but he shared so much.  It was really beautiful. 

The story is such that not only is it going to be placed on the Community section of the news page, but also the News page.  I am so hopeful that one day our story and the stories of so many will lead the way to a cure.  In my wildest dreams, that cure is already on the way.

Click here to see the video.

Sunny Day

Thursday, November 8, 2012

5 comments
And not just from the sunlight that is illuminating all of the red, yellow, brown, orange, and green leaves outside the windows.  Today has had so many rays of sunshine.

First, in their backpacks, were Bobby and Maya's first school photographs!  It's amazing to me that they are in preschool, let alone that they have "class" and "individual" photographs to mark it!
Can you believe it?  I have 3 year old preschoolers!!!


This week has been a good one, from a preschool standpoint, for Bobby.  His teacher said that Tuesday was a good day, and today, even with a pep rally and break in routine, wasn't bad.  Two parents contacted me to let me know that they saw the kids during the pep rally and an activity, and that things went well.  Bobby high-fived one of the mascots, and Maya went and hugged one!  He struggled, but it wasn't awful.  At one point, when he tried to pull the hair of one of the aides, she said "Bobby, please be nice," and he began to stroke the side of her face.  She said that she almost cried!  These people care so much for him and celebrate him; it's quite the sunshine.

We are building up to the Monday psychological eval, and I mentioned it to his teacher, letting her know that I would pass on the results and that we were preparing for a diagnosis of autism, since that is what the IU has asked the pychologist to evaluate for.  For us, it wont change anything.  Bobby is Bobby and we love him, every single piece of him.  She responded in a way that had me near tears: "No one wants that for their child, or a child they love, but that little word: "Autism" doesn't change anything about the child. Just because Bobby may be diagnosed autistic on Monday, doesn't mean he wasn't autistic yesterday, or a month ago, or a year ago...he'll still be the same Bobby no one can help but love."  Have I mentioned that we LOVE this woman?  She and her classroom aides are just awesome ladies.  They care for these kiddos like nothing I would have imagined.  We are so lucky.

On Tuesday, Bobby's BSC started at school.  I was lucky enough to chat with her afterwards (as I was in the pick-up line when she was leaving) and she was lovely.  She seemed very kind and intelligent; she really liked Miss M. and the classroom, and praised the way that they work with Bobby and all the children.  She also said that she 100% concurs that he needs a PCA to do well in the classroom, so it looks like we are all on the same page.  Now, it is on to convince the school district that this needs to happen in a timely manner.  At present, however, he has a SEIT for an hour on Thursdays and his BSC for an hour and a half on Thursdays; the BSC also comes for an hour and a half on Tuesdays.  We are still trying to get an OT and SLP from the district (he still has the private SLP), which they approved him for.  Based on Monday's eval, the info from the BSC, and all that we keep telling them (and that the school is telling them), we are trying to stay optimistic.  Services will only carry through this school year and next; if we choose to not enroll him in public school, we've been told he wont be eligible for services.  We are hopeful that his needs will be met and he will have better coping skills by the time he is 5 and kingergarten ready, but part of that means intensive help now.  So, we are working.  But I'm taking it as rays of sunshine that the help he does help is good help.

We're noticing small differences that tend to point to at least somewhere on the spectrum.  For example, Bobby's favorite color, to the exclusion of all others at times, is red.  There is research that shows that children who show signs of autism may see the color red differently that typical children, and that it may appear almost flourescent.  We always thought it was just his favorite color (and it may be just that and only that) but some of the meltdowns that have happened as a result of not having his favorite red clothes readily available, or after getting his clothes dirty and not having the option to change them, or of not being able to find his favorite train (James, the red one)... it makes you wonder.  And, hey, if it saves some of the tantrums, then I'll stock the whole damn closet with red clothes. 
Attack of the red shirt and gloves!  Brown is his second favorite color, so the pants worked since his red ones were all dirty.

Another thing that Peter brought up the other day is Bobby's eyes.  I used to say that his eyes were so dark that they were black; they looked this way because his pupil was so dilated that the brown was just a rim.  Because this is the way he's been for a while at least (honestly, I cant remember when I first used to comment on it), I would just say "oh, his eyes are almost black", or something the like.  Peter said that he had made note on a few ocassions where he thought 'huh, it's interesting Bobby's eyes are still dilated," but never thought much of it.  We never researched it because he has yearly opthamology appointments and no one ever said there was something wrong (of course, they always dilate his eyes even more then!).  The other day, Peter said, "Have you noticed Bobby's pupils aren't dilated anymore?"  I said I hadnt noticed; I mean, I hadnt noticed they were dilated to start with!  It didnt seem 'off' to me that his eyes were so black.  But then I looked, and I noticed again today.  Brown eyes.  His pupils were normally constricted; the brown was clearly visible.  I decided to look it up today and a lot of folks mention a connection between ASDs, dilated pupils, and a return to normal (or near normal) when gluten and casein is removed from the diet.

This stuff could all just be coincidental, but it's kind of creepy when it is so spot on.  And a quasi-ray of sunshine if this who GF/DF experiment is helping Bobby. 

After school, we get home and the kids watch an episode of Thomas and Friends (which drives me nuts but they like) while I make lunch, then we eat together, clean up, and they take their nap (which they are doing now).  Meals seem to be hit or miss with Bobby especially (although Maya has her moments).  Peter and I have noticed HUGE changes in him since changing his diet, mostly in verbal improvement, behavior, and a lessened appetite while maintaining good weight growth, positive bathroom activity, and better focus.  It's not the end yet, but it's a good start.  So, I make lunch and the kids come in: GF bread with strawberry jam, grapes, GF/DF corn spirals (like cheetos but no cheese and made with ingredients I can pronounce!), and a GF/DF brownie that I made this morning.  Maya normally eats well; Bobby, it all depends.  Today, he ate everything.  This morning, was a huge pancake morning for both of them (they LOVE pancakes), then a full lunch.  I was kind of suprised, actually.  No fighting, nothing.  Just eating... like typical 3 year olds... making conversation among themselves, asking for seconds where they wanted them...
Attack of the Pancake Eaters!!! 


Then, on to naptime.  Before nap, we pray.  This started with me standing between their beds, reciting the Hail Mary, then the Sign of the Cross (which they were do, but not verbalize).  Then Maya started wanting to lead the prayer.  Bobby usually watches her and smiles, and then we all make the Sign of the Cross, I tuck them in, sing their song, and night-night.  Today, when Maya was done, I turned to Bobby and said "Bobby, would you like to say the Hail Mary?"  He looked directly at me when I said his name, smiled when I was finished, and recited the entire prayer, smile on his face, ending with the Sign of the Cross and balancing himself so that he could hold his bear in one hand and make the gesture with his other.  My voice was all choked up when I thanked him and proceeded with the bedtime ritual, willing my tears not to fall, lest the kids think something was wrong.  Hail Mary, indeed.  Nice, warm ray of sunshine.

I found a big swingset on Craigslist and we've upgraded from our hard plastic, Little Tikes one to this mammerjammer, much to the delight of the kiddos.  Thanks to Peter and our neighbor, M, it was taken apart and put back together at our place last Sunday afternoon.  M, being so sweet, took a pie and beer as his payment, and is such a nice guy for so many reasons (not the least of which is that I adore his kids; his daughter even babysits for us).  The kids?  In heaven.  In fact, we're going to enjoy the 50 degree afternoon (after snow!!!) with some post-nap play!  (I couldnt get the pictures to post... not sure why, but I uploaded some pics of the new swingset on FB.)

I suppose I should get back to cleaning up the kitchen... The peanuts wake up around 3:30 and the last thing I want is a dirty kitchen and them telling me we have to play outside (which I promised!)

Rockin' It

Tuesday, November 6, 2012

6 comments
I was a child of the whole "Rock the Vote" era; and, thanks to starry eyed teachers, I grew up believing that my vote meant something and counted.

Yeah.  I dont so much believe that anymore (although I'd like to).  But I still vote.  It's my duty and my priviledge.  It's something that Peter and I take seriously and will teach our children is a way of carrying on their civic responsibility.  That being said... It's kind of one of those lesser of evils in our house.

I would love to be someone who is so jazzed about their candidate that they eat and sleep them, that they post signs in their yards and volunteer at polling places, that they dedicate blog posts to them, and tell their kids why it is oh-so-important that XYZ be elected/re-elected. 

I just dont have that.  I'm not excited about the candidates and, instead, feel left with the nauseating is this the best we have to offer???? feeling.   Sadly, it feels like neither of the leading presidential candidates have a full grasp of what the job of the President  (or Congress or the Supreme Court) actually is.  As they talk out both sides of their mouths, telling this group what they want to hear and that group what they want to hear, it just becomes clearer and clearer to me that our system is so flawed. 

Billions of dollars have been spent between Obama and Romney as they lobby, beg, (and hopefully don't steal) votes.   Billions of dollars.  In light of the aftermath of Sandy, that makes me want to gag.  Not to mention, the amount of folks in this country who are struggling to get by without disasters throwing a huge wrench in their plans.

Then there are the nasty comments.  I'm a racist if I vote for Romney, I'm a communist if I vote for Obama.  Voting with my brain, voting with my genitals, just voting in general enough to end dinner parties and play dates.  Friends who no longer speak- the red and blue lines just too much of a divide.

This doesn't sound like the stuff I learned about in civics class.

I can't say that I 'rocked the vote' today.  I voted alright.  I walked the 4 blocks to the local elemenatry school, politely declined the propaganda that the blues and reds were handing out, and became the 194th person to vote in that location, a bit over an hour after polls opened.  I stood inside the little booth, watching the screen light up with all of the candidates' names.  Obama/Biden... Romney/Ryan...  My vote was decided quite a bit ago, but it was still with a sense of sadness that I made the decision and cast my voice into the pile.  I want to be excited.  I want to feel like I'm working to elect a leader that I can be proud of.

Instead, it just felt like I was picking the one that might do less damage over the next 4 years.  Someone who might hold the Office of the President with dignity and honor.  Someone who will hopefully uphold the words of our Founding Fathers, and the morals and values we hold dear.

I dont know what will happen today.  My heart is heavy and I'm in prayer, hoping that no matter what happens, the outcome will work towards becoming the America that I want my children to grow up in.

I'm just so tired of the mudslinging and anger.  I'm ready for November 7th.

Psych Out

Monday, November 5, 2012

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Bobby's initial IU evaluation asked us to consent for a psychological evaluation for Bobby, which we declined.  He had such a negative experience at the IU plus he was starting school- we just didnt want to have him identify the new experiences as one giant negative.  After 2 months of preschool, trying to get therapists scheduled for him, and his weekly speech, we discussed his case with a friend within the "system" as well as with our pediatrician, and agreed to the psych eval.  After four written requests to schedule it, I received a phone call from a woman who sounded quite young but seemed very personable.  We spoke for nearly half an hour, and she volunteered to come out to our house for the evaluation; in fact, she asked if she could come to one of our playgroups.  She wanted to see Bobby with other children, as well as in an environment he's comfortable with.  You could have thrown me over with a feather! I was shocked, especially as it seems like normally kids are evaluated at the main site.  I'm hoping this is helpful in her getting a legitimate read on Bobby.

Even though I knew what she told me and was prepared, it was still a shock to hear her say "You realize that I'll be evaluating him for signs of autism?" I knew.  Of course I knew.  I've been running around in this 'special education circle' since August and people were alluding to the "A" word, but still... I felt the lump stick in my throat.  I explained that yes, I understood what she was looking for.  She asked about my concerns and I was honest with her; at the end of the day, regardless of what someone else says, it's all about getting your child the help that they need.  Even when it is hard for you. 

She said some things that I really respected.  In discussing the reports she'd read about him and why she'd like to see him in playgroup, she said "I really would like to see Bobby being Bobby; I can't know him just by reading about it."  In discussing his special needs and whether or not they could be neurologically based, she echoed our thoughts, "He's young enough that therapy can help him live as normal as possible if he has an ASD but if he doesn't then therapy can only help him acheive." 

Regardless of whether or not he has a neurological impairment, a learning disability, developmental delays, or special needs, it doesnt change the fact that Bobby is Bobby.  He's still my Bobby-boy.  He's still perfect and wonderful, sweet and everything I could ever want.  A label that someone gives him wont change that; if he's autistic then it is no different than him having poor eyesight or being tall.  It'll just be a part of who he is, like having brown hair, olive skin, and dark eyes is.  It's make things more challenging, will require modifications that he might not otherwise have needed, but lots of things that make each of us unique do that.

It still shocks the maternal system, no doubt.  I still look at him and want to cry for the changes we are putting him through.  But at the end of the day, these moments will help him reach for the stars he wants to grab, whether that be with his hand or a lasso. 

Dietary Changes

Sunday, November 4, 2012

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Part of this post was initially posted at HHB on October 16th.  As we're now several weeks from that post, I thought I'd write about some of the changes our house has been undergoing.

I've been reading a lot recently, to try and put Bobby's special difficulties into perspective and to get some methods we can use at home. When he is sweet, he is sweeter than pie... When it is a bad day, well hang on. It's a rough ride.  There's throwing of trains (my head has been a casualty of Gordon and Thomas at times), slapping, yelling, crying... It can be absolutely insane.  To be clear, Bobby is a sweetheart and, 80% of the time, life is good.  It's that 20% of the time that is hard to handle.  It's that 20% of the time, combined with his preschool difficulties, that led us to agree to the IU's request for a psychological evaluation (more on that later).

Because of my background, I turn to books and published research when I'm in need of advice or information.  I've focused my reading to autism and PDD-NOS related titles, because even without a diagnosis, these are the things that seem to fit him when it comes both to behaviorial attitudes when upset as well as techniques that help. Among the books I've finished and recommend are:

  • Children with High Functioning Autism: a parent's guide by Claire Hughes-Lynch. This book was a good primer on the types of services available, how to advocate for your special child, and the different types of therapies that this family found helpful. Claire is a college professor who teaches about special needs and gifted needs, so it is written in a clear, easy to understand format with good references.

  • Louder Than Words: a mother's journey in healing autism by Jenny McCarthy. In a very laid back, expressive way, Jenny shares the story of her own journey from her son's diagnosis to what she feels is his recovery. I read this when I was struggling to make sense of having a special needs child and, although our sons are very different, I found a lot of hope in her writing. There is a fair amount of potty mouthing, but the book is honest and emotional.

  • Not My Boy!: a father, a son, and one family's journey with autism by Rodney Peet. As in the above title, this is a book from a parent's point of view, in this case NFL football quarterback Rodney Peet. In this extremely moving and honest story, he talks about the difference in how moms and dads attack problems with their children, giving some light to how the fathers are feeling in situations like this, as well as offering advice on how to cope. This is not a treatise on curing autism or how you should do this or that, rather it is a straightforward walk through the Peet family's journey from diagnosis in infancy through teenagehood.

  • Look at My Eyes: Autism Spectrum Disorders: Autism and PDD-NOS by Melanie Fowler. This was the first book I read because it was short and seemed like it would get to the point. Boy did it. It wasn't until I read this book that I saw the PDD-NOS behaviors that Bobby was showing for what they were. One or two could just have been issues, but several together brought me closer to helping Bobby. Although it is short, the book is a good place to jump in and get your feet wet when you are first discovering what is going on with your child and how you can help them.

  • Unraveling the Mystery of Autism and Pervasive Developmental Disorder: a mother's story of research and recovery by Karyn Seroussi. By far, this is the book that is helping me the most at present. Written in a clear and easy way to understand, Karyn backs up what she is saying with personal experience, the experiences of those families she is close to, and with scientific evidence. While the medicine and science isn't 'main stream', it appears solid. Although I dont believe that diet alone can 'cure' anything, I think that dietary changes in combination with other things can. Also, her point is that some children (a third or so) may be having hallucinogenic responses to food (versus allergic ones) and that removing the offending foods can help a child make huge leaps with their therapies is one that, when you find your child being represented in case studies, makes you take a step back.

The last book had so many case studies, which was helpful in trying to determine whether or not something could possibly help our family. One little boy, in particular, resonated with me and my hands were shaking as I handed Peter the book, asking him to read it over. The little boy LOVED bananas... He only wanted to eat bananas. He didnt appear to have an allergies but man, when he ate bananas he was on cloud 9- literally.

That's so much like Bobby it was scary. The first food he requested was bananas and he could easily eat an entire bunch in a day if you would let him. I use bananas in so many alternative baking recipes because I always have them on hand and because I know he'd try the food, knowing there were bananas in it. Crazy, right?

On October 14th, we nixed the bananas.  After reading it, I just couldn't give them to him, the entire what if running through my head.   After reading through some of the research with Peter, we decided to not just cut the bananas, but dairy and wheat/gluten too. Would it work, especially since we neither know nor believe an allergy or the like is the underlying issue?  We had initially asked our pediatrician to order some non-invasive testing, to see if the idea of possible opiates/opiate derivities or yeasts being released in Bobby's excrement would come out positive; the belief was that a possitive response would be a 100% yes that we need to move toward this avenue of change, to see if some of these changes will help him with his behavior.  Our pediatrician, God love her, went through and read up on every test we asked for; she ultimately felt that they weren't worthwhile to run due to the risk of false positives/negatives.  With her support, we decided to do the GF/DF/phenalic free diet changes without the testing.  Her suggestion was to wait until the new year then start reintroducing foods to look for a change.  She was amazing; one of the things we loved about the practice was the feeling that different views were explored and researched, and that honest conversations were conducted with parents. LOVE our practice. LOVE LOVE LOVE.

So, it's been a few weeks.  Right away, Bobby's teacher and my mother-in-law noticed some changes, as have we.  He's gotten more verbal.  The first day, the verbal increases came as he asked- begged- for foods that were off the menu.  He refused the replacements and ate the least I've seen him.  All this time in, he's still eating considerably less.  But here's the kicker: he's still gaining weight, he's sleeping like a champ, and his bathroom habits are normal (better, even).  We're still battling some inappropriate behaviors and his language is nowhere near age-appropriate; the worst part is not knowing if it is diet, preschool, or therapy with an SLP (or a combination of) that is most beneficial.

At this point, it's a lot of GF/DF cooking, an increased food bill, and a lot of extra work- all worth it if it helps.  We'll find out in two months if food has made such a huge difference.  January will see the reintroduction of bananas (which I'm really hoping is NOT the problem because my monkey boy LOVES bananas).  Then it will be a dairy reintroduction (which wont be that tough, since we dont do a lot of dairy anyway, but it will be nice since it seems like SO MUCH has freaking casein or whey in it!), followed by the reintroduction of gluten.  If there are negative side effects, then that food is gone for good (or at least for a good long while!); it there arent, then we'll keep adding things back in.  Part of me really hopes the food changes are coincidental and we can stop looking at every little thing (if we're going to do it, it has to be done right) and paying twice and three times as much for things.  But, if it is the issue, then such it is and we go on from here at least knowing for ourselves that this was the right choice.

(5) 2

Saturday, November 3, 2012

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After I finished my Friday run, I found myself standing at the garden for our missing children, in front of the beautiful Virgin Mary statue that Peter gave me for Mother's Day.  "Sometimes I feel like no one really remembers," I said through the tears.

It's not true; Peter remembers.  He always remembers, always thinks of them.  "No one" wasn't an accurate thought; I know others remember.  But my heart was sore.

My dad forgot.

My own dad.

He was visiting with us and we were discussing Thanksgiving and the day after, which is when we always trim our tree.  I make egg nog and turkey soup and we play Christmas carols while rearranging furniture and putting up our decoration.  It's a good time.  Whether there is a houseful or just us, it's fun.  I mentioned in passing, "This year, we'll have Alexander's birthday cake, too."  The 23rd is the day after Thanksgiving...  One day, his birthday will fall on Thanksgiving.  I'm not sure how my heart will handle that one.

"Who?"

There was a sharp intake of my breath; my heart began to crack.  I was glad that my back was to him.  "Your grandson.  Alexander."

"You mean B...?" He said, mentioning my nephew.

"No. I mean Alexander."  Did my shoulders start to hunch?  Could he hear that cracking sound?  Did it sound like trees outside instead of my heart crushing in on itself?

"I dont have a grandson named Alexander."

He seemed legitimately confused.  I walked over to the pictures that sat next to where he was and lifted the third one in sequence.  "Alexander," I said, softly.

He was quiet.

Maya was making pancakes and I wasn't up for the silence or for hearing my dad try to backpeddle.  I know it wasn't on purpose.  I know it wasnt mean spirited.  I dont have hard feelings, even as I'm typing. 

But it still hurt.  It still was a direct hit to my heart.

It was one of those reminders.  Everyone elses lives have gone own, even my own father's.  The last few years have been able to fade into the recesses of their memories.  They can look and see two children... But I can't.  I never will.  I don't want to, either.

This is par for the course, I suppose.  Part of me feels like I should be used to it, that my skin should be thicker, that I shouldn't care, that the fact that I remember them, that Peter does, that Bobby and Maya know their siblings- this should be enough.

But my heart is still heavy, even today.

Nicholas, Sophia, Alexander, Bobby, Maya.  They are my children.  All of them.  Not just the two that I snuggle on the couch or laugh with at the park.  Two daughters, not just the one who helps me cook in the kitchen; three sons, not just the one who runs laps with me around the track.  Defined by all of them, changed by all of them, mother to all of them.

It doesnt matter to everyone, I know that; but it matters to me.

One Week Later

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Okay, so it isn't a full week later, but close.  This time last week, I was navigating the D.C. Armory, getting my bib and t-shirt, and figuring out the bus and METRO system so that I could get back to IGH (and then, after a pitstop, to the Team Lemon dinner and then, finally, back to IGH for bed...)  It was a fun day- a busy day- and one that used some of my extra energy as I prepared for my last night as a non-marathoner. 

And now, here I am... Back home... It seems like the race was a lifetime ago.  I look at the medal hanging by my window and still cant believe that I did that distance... That I was actively moving- running- for almost six hours... for 26.2 miles!  More, actually, when you add in the walk to the runner's village and the start line, and then the walking after.

I'm still kind of in awe.

I had to get new sneakers (2 pairs, I always have two that I rotate), and I did my first post-marathon run yesterday.  It was only two and a half miles (and man did my knees hurt!) but there was a sense of wow! as I was lacing up and going.  I ran again (well, a combo walk-run-walk) this morning for two miles, even though I feel overly tired, heachachy, and with a cold brewing.

Running feels...different.  I cant really explain it.  I have a 5K coming up next weekend, and I'm already planning my next "big" race.    (It looks like it will be The Other Half next October, although Peter thinks I should plan for an Olympic Triathlon, too.) 

I know that the high will wear off soon enough, but I'm still feeling it, and it's pretty amazing! :)