Dinner: a 4-D Experience

Teething has reduced the little man's diet to nothing but fingers and toys.  I was able to shovel in a couple of bites of a chicken risotto before the bowl was taken hostage.  The peas never stood a chance; see for yourself.  We're now off to bath time, obviously.  

The Journey- just the beginning

Flipping back, as I often do, through previous entries, I realized that I've never written about the few days leading up to Miles' diagnosis of Down syndrome.  The testing and results timeline is nestled around Mother's Day.  

A few days prior to that Sunday, Miles had his two month check up.  As the doctor left the examination room to schedule a follow-up blood test, I clutched Miles so tightly because the world was spinning and the floor had just fallen away.  We left that office and headed to a lab to have lab work done, all the while sobbing.  Results were expected by the end of the week, and, of course, they did not arrive.  Agonizing does even come close to describing the turmoil Jesse and I went through that weekend.  We couldn't sleep; we couldn't focus on anything other than maintaining our routine.  

And then there was Mother's Days, ahhhhh, Mother's Day.  I spent part of that day sitting on my couch, crying over the newspaper ads offering discounts on Mother's Day brunches.  Never, before this day, would I have wanted to go to something like that, but I was crying because I felt so guilty for being a mom not in the mood for celebration. 

I went to sleep that Sunday night just knowing that he was going to test positive for Trisomy 21, and then my fears were confirmed that following afternoon.  Jesse arrived home soon after I got the call, and I met him in our front yard.  However, I was wordless; I didn't have to say anything.  The desperation in my hug, the expression on my face and the fact that a rainstorm wasn't phasing me broke the news.  I will always remember that hug; we were embracing not only for sadness but also for reassurance, that the other person was still there and that this was really happening.  

Fast forward to ten months later, and here I sit finally able to share about the days leading up to Miles' diagnosis.  Not every moment with Trisomy 21 has been affirming.  In fact, as many of you know, this year has been stuffed with heartache and fear.  Some days I see Down syndrome is an avalanche, this abyss that smothers everything we go through.  Unless you truly know the disability, you have no clue how far reaching and complicated its impact can be.  And all the unknowns and uncertainties can leave you breathless and panicked.

Even the lowest of the lows are accompanied with the most brilliant highs.  The love I have for my family, for my amazing son only grows stronger by the minute.  Jesse and I couldn't be prouder or more pleased with his development.  Every day brings a new surprise; another star in his crown appears.  Miles is a gift.  And this May, I will celebrate all things maternal with a wiser and more open heart.  Frankly, every day with Miles is Mother's Day for he is cause of constant celebration. 

Thank you to everyone who follows this blog, who lends their encouragement and support.  I would not have wanted to take this journey without you!   

TLC makes all the difference

Thanks for all of the well wishes.  We made it through with the help of some grandparent power.  Monday afternoon, as each of us wallowed in private misery, Jesse's mom, our Grandma J, swooped in with some TLC.  She accompanied Miles and me to the ER, and she held him the entire time he had his IV.  What would I have done without her?  My arm was hooked up too, and I couldn't give him the hugs and love he needed.  

The following day Grandpa G joined the recovery team and quickly jumped in with baby duties while I took Jesse to the doctor.  Having their help and their support makes us feel so loved and blessed.  Volunteering to enter a house ravaged by a GI bug takes bravery; even our dogs were steering clear of us, at this point.  Bravery or love, or both- regardless, I will be forever grateful.  

Miles is still sick-ish.  A cough has developed, along with lots of snot.  His blood work from Monday looks like he's battling an infection.  Oddly enough- no fever yet.  His energy level has remained low, but he's eating more.   Progress is slow and steady.

like dominos...

... we have all fallen.  Miles shared the love and the bug, and now both  Jesse and I are sick.  Miles and I wound up in the ER last night- getting fluids and pain meds.  Jesse is headed to his doc later today.

I'm too pooped to include anymore details.  Maybe later. 

Not over yet

Tummy tantrums started again earlier this evening.  This time diarrhea has made an appearance.  Miles got an early bath tonight.  We both did- 'nuff said.

I am starting to get a little freaked out.  Heartbreaking- he's such a sad man when he doesn't feel good.  I know he's ill when he allows for cuddling, and he's been in hyper-snuggle mode today.

: ( 

A doctor's visit is in order.  Tomorrow.  

Miles does his Linda Blair impersonation w/o the green pea soup

Last night was terrible, just plain awful.  Around 9:30, Miles woke up screaming.  From that point on, he proceeded to vomit for the next 5 hours.  At first, the "gastrointestinal pyrotechnics" occurred every 20 minutes.  Eventually, it tapered off to every 45 minutes- giving him and us tiny naps in between each round.  In all of his 13 months on planet Earth, the kid had never truly thrown up.  Sure, there was some hellish spit-up bouts, but that was GI related.  What we experienced last night was a true yack attack, and it was gross.  I don't know what was nastier- watching my bathroom and hallway getting doused in quasi-digested jarred turkey or fighting to keep the dogs off of clean-up duty. 

By 4 am, Miles was able to settle down for some decent sleep.  Jesse crawled into our bed, and I hunkered down next to the crib on a camping mat.  The nurse-line was of absolute zero help.  The on-call nurse instructed me to call back if the vomit started to look like mucus and/or bile.  Well, 45 minutes later, I called her back stating we just reached that point, and she actually asked why I called her back.  Hulk getting angry!  Calmly, I reminded her of the earlier instructions, and her response was to push the call-back criteria back a little further.  Call back if he starts acting like he doesn't recognize you, or he starts to hold his stomach.  Seriously, that's what she said.  I knew her resourcefulness ended there.

We just toughed it out.  And don't you know it, Miles woke up all smiles this morning.  Looks like he got all of the demons out, that he fully exorcised whatever devil was lurking in his tum-tums.  A light breakfast of pedialite has remained inside, as has his bland lunch of an oatmeal-like paste.  His main objective is to get back to playing; Jesse and I are still trying to catch our collective breaths and silently hoping that tonight is way less eventful.

As for causes of the tummy eruption, we haven't a clue what the catalyst was.  I did switch brands of soy milk- went to an organic brand.  I'm scared to give it to him today, just in case. 

One from the vault: Flashback Friday

Miles came home not weighing 5 pounds.  To keep his hands warm, we kept socks on them.  Pictured here with Jesse, this was just after he got off the bili-blanket and could be moved around.  Probably not more than a week old.  Seems light years ago... 

Yoo-hoo! Excitement in list format:

1. The first tooth is out, and it is beautiful.  The cutest darn tooth ever.  Honestly, I squealed when I saw that itty-bitty chomper.  I have never loved a tooth so much! 

2. Houston, we have sippy cup!  The Nuk brand, level 1, came through.  It's about 30/70 to get the soy milk in now- 30% of the time, he'll hold the cup.  The remaining 70% is left to the adult.  Luckily, it isn't heavy lifting.  He'll drink upwards of 3 to 4 ounces per meal.

3. Mommy advice rocks.  Ladies, thank you for reminding me that the pediatrician does not call all of the shots.  Cash reward for helping me design a brain chip that blocks out the word should; with it gone, my life would be so much better.

4. Miles' hair is starting to curl.  We are now using detangler with every bath, and what a difference it makes.  The front side of his hair still mirrors the banker-comb-over 'do.  While the back is looking more like frat boy wispy curls- you know, those flip curls they have from living in baseball hats year 'round.  Yet Miles' curls are honest; no white hats here.  Lord, I don't think the kid will ever wear a hat judging on how much he hates them now.

5. We've made a little progress with solid foods, though I have a hard time classify those meat sticks as food.  Miles has been introduced to turkey and chicken sticks- like Vienna sausages, equally as visually gross.  Removing a stick from the jar made me think of Hannibal Lecter.  A press-on nail was the only thing that link was missing, and then it could have come directly off of the set of Silence of the Lambs.  Regardless, Miles and the dogs dig 'em.  I just try to look away.

Side note: Miles is going to have the lab work done for the thyroid test today.  Wish him and his Dada, who will be holding him, luck.  Finding a vein is impossible; his arms a link sausages stuffed into baby concert t-shirts.  

Help!

Mommy advice needed:

Teething and weening- the first topic is getting very trite.  Though repetitive as it is, we are not making much progress.  Some days have low grade fevers; every day produces drooling spells that would qualify as environmental disasters if only his chin were beach front property.  Last evening was all screams- at me, at the jar food, at diced real food, at the sippy cup, at real soy milk.  Respite came only with Motrin and 8 ounces of formula (a no-no) in a bottle (another no-no).  Seriously, how I am supposed to get him to take sippy cups when he's refusing most feedings.  Furthermore, we are going to need help teaching how to use the cup.  He's got pieces of the process down: he'll hold to cup, and the bang his tray or my hand, which ever is closer.  He will also drink from the cup; that's if you hold it up for him.  However, Miles has yet to raise the cup to his mouth.  For the kid who will try to teethe on anything, literally, it blows my mind that he's got no interest in putting that cup to his lips.  So if you've been in a similar situation with your darling, I'd love to hear how you survived.

How soon...

How soon can I cut Miles' hair?  This will count as a first haircut; he's got a baby mullet that could use some tending to.  We started using detangle spray this weekend- the back of his head is not only long, but it's also going curly!  This call for photographic evidence. 

It's been raining all day : (

Transitioning. Is. Hard.

Rarely will Miles now allow me to feed him, and that's goes for anyone who is not named Miles.  He's been snubbing jar foods for a few weeks.  Desperately, we are trying to encourage a new array of more independent foods.  But meeting his dietary needs is becoming a nightmare.  How do you get iron and protein into a kid who only digs Cheerios?  A kid who shouldn't even be eating Cheerios in the first place??? 

Friday, his doc told us Miles should be off the bottle and solely drinking from a sippy cup.  We've been trying for months to get Miles to use a cup.  I think OT will have to step in to provide some assistance.  He's great at using the cup to smash his snack and to keep beat with music.  Occasionally, Miles will swallow when I hold the cup up for him- and that's the most progress we've made.  So riddle me this Batman, how are we supposed to solely use a sippy cup?  Let the kid get dehydrated?  Ugh!  We will  just have to do this at our own pace.  

It's probably due to the Radiohead show that I'm listening to, but I seem to only be fixating on the snags- probably why I can't listen to this band more regularly... allow me one more rant, and I'll perk up and post something cheerier in the near future. Anyways, I still can't flip through the "What to Expect During the 1st Year" book without miffed.  Last night I had to look up something about teething, and that darn book kept prattling on about some kids start getting teeth at two months while some are late bloomers like nine months.  We are now over a year, and those blasted gum bumps will not relent.  Adding more bran to the tummy ache, the doc said she felt another bump on the bottom gum.  Great, now we've got three sites of misery to contend with.  A triumvirate of dental terror.  That book irks me though- so not written for the families who are living on a different path, the tykes who don't see teeth until 18 months.

Did I mention it's been raining all day long?  Blah.  I think I need a group hug.  At least my arm is looking much better- less like an ink spill and more like a roughed up banana; I can live with that.   

Tear the roof off...

...of my house and administer us a giant pain reliever.  Pre-bedtime teething reached an all time high last night.  Plus, my arm is still a brilliant blue.  We need a weekend at a spa.  Miles' little booboo bunny can't tackle this sucker; just feast your eyes.  Hope that picture isn't TMI (too much information), but Jesse thought it would look neat photographed.  He's right, it looks like something the Hubble telescope might have captured, 10 billion light years away.  Love that "outside of the box" thinking- only wish it felt as cool as it looks.    

"He's like the David Byrne of cucumbers."

Miles' parents are pretty big Talking Heads fans.  The observation above was utter by an impressed dad, a dad who thinks his kid has mastered the now famous "Once in a Lifetime" arm chopping dance.  Plus, kiddo has great taste in music and snack food.

As for the cukes, they make excellent teething soothers.  I'll slice up it and let it chill for a few hours.  We need plenty of back-up slices because the dogs have developed a taste for them, and Miles is more than willing to share his snack.  Reciprocity at its finest- dogs get refreshing treats, and Miles earns unlimited toe licks.  In our struggling market economy, maybe we should take a page from this simple, kitchen-fronted barter and trade operation.  Just kidding.  Sorta.

The teething continues; man, it rages on.  He's fallen off the nice guy wagon, and he's on a total chewing bender.  Anything and everything has been mouths in this house.  Even the aforementioned dogs' tails; I was a slow in intercepting that event.  Maybe that means Miles won't freak out (like I do) about find hair in his food.  For me, it's a total deal breaker.  As for a baby who actively seeks out a mouth of fur, he might be a little more willing not to send the plate back to the kitchen.

On a completely random note, I fell down my stairs (again).  As I was headed out for work, my body opted to take the fast track down 2/3 of the flight.  The entire fall was broken by my left forearm, which is now a robin's egg blue shade.  Fearing being late for work, I opted to get ice once I got there.  Dumb idea because I was light-headed and nauseous for the entire 15 minute drive.  How am I doing now?  I'm aching like a demon, and the bruise is still looking like a blue and purple tie-dyed t-shirt.  If it's blue on Monday, I'll get a medical opinion.  

Genetics strike again

Just found out that I need bifocals; it was inevitable.  On the bright side, I just sprung for some super sexy frames, if frames can be super sexy.

 (in a lovely shade of green)

The Birthday Boy, part 3

Miss Sadie enjoying the very warm spring dayWesley really liked the Mardi Gras beads.
Henry contemplates his next bite.
Miles wants a spin as DJ Lance Rock.
Opening goodies!

The Birthday Boy, part 2

Daddy as DJ Lance Rock of "Yo Gabba Gabba!" fame.
More sweet snackin' cuteness
It's my party, and I'll cry if I want to.  Miles at the end of the night, approx. 7:00 pm.
Peek-a-boo, Dada style.
My son, the lizard tongue.  The kid loves pickles; what can I say.

The Birthday Boy, part 1

An angel food cupcake for my angel!  He took his b-day treat down with very little coaxing, as evidenced by photo #4.

Our after dinner conversation

Watching this makes me want to hire an in-home personal lighting crew.  Yikes, my long day at work really shows.  However, Miles' insane cuteness wins out.  Baby trumps mommy.

P.S.  Just a day to go until year one is reached.  Can I get an OMG?!?

Perfect timing

Coffee time, my favorite time of day, got a little more special this morning.  At a leisurely 9 am*, I was chatting with Jesse over hot cups of joe, reminiscing about our 4 years of marriage (as of today!!!).  We were wondering where has all the time gone- because this has been a very fast four years in recorded history.  Suddenly, some adorable baby chortling sounded from the monitor, and that led to a collective sigh.  Ahhh, the best anniversary present was sending us a perfect symbol of our love.  Gotta love that fruit of  our (my) labor; he's got great timing. 

*2 day at home because of the "mega"storm, woo hoo!   

Wheat that is more than just tolerated; it's loved!

We have slowly reintroduced wheat, just not in baby cereal form.  So far, so good.  Miles developed a taste for Cheerios during snack time at his weekly play group.  Like the Hungry Hippos game, he'll snatch up handfuls as soon as the tiny rings hit his tray.  One hypothesis for the stomach success, most of the Cheerios wind up under his chin or in the dogs' mouths.  Miles probably only eats 30% of what's given to him.  And I don't mind if the dogs are getting some unsanctioned treats, my boy goes over the moon during snack time.  Imagine what he'll do when he's old enough to discover Honey Nut Cheerios- now that's the good stuff.

Cold beauties in my backyard

I should be in 2nd period, but I'm at home and blogging. Yippie!

Wasn't quite the "Mega Storm" that the Weather Channel predicted though it is certainly pretty.  And that's good enough for me and the dogs, especially the dogs.

My 5 Senses

Hearing: The sound of raindrops, many chilly drops landing on the windows

Seeing: Conflicting TV reports of a "mega winter storm" that is supposed to strike any minute

Touching: These keys as I try to stay off of Weather Underground and weather.com

Feeling: Certain that I will not get a snow day- in my four years in teaching, nary a snow day

Smelling: Defeat.  Wait, I mean de feet.  For a baby, Miles' feet can get a little funky.

Seriously, this kid's feet can get a little on the ripe side.  How?  I haven't a clue, but it's genetic.  Your lucky there's not a scratch 'n' sniff app that I could use to upload a sample of just one stinky piggy. 

And even more seriously, I wish the local networks would stop these bogus weather reports.  My heart can't take the letdowns anymore.  The seeming simple fantasy of sleeping in on a snowy morn is too painful to have slip away again.  I've been through this same set-up at least 5 times this year.  There should be a state law that prohibits providing false snow reports to teachers.  Believe me kids, we want a snow day more than you!

All I want for...

... my birthday is my two front teeth.  Like this guy!  Miles and Mr. Beavs (rhymes with Reeves) eagerly await bite-size morsels of cinnamon buns.

Another day of many firsts

Here's a list of all the new firsts Miles experienced yesterday:

1. Family trip to IKEA

2. learning the true love of modern yet functional design

3. chilled cucumber slices- so good for angry gums

4. sucking said cucumber slices flat- like a spa treat for the soul

5. drinking water from a glass- forget sippy cups, this is big boy time

6. getting a fury friend with the same teeth as Miles is trying to pop out

7. said friend is now going by the name Mr. Beavs, and he, like everything listed above, is from IKEA (see image above to witness the cuteness of this stuffed beaver, who also ate cinnamon buns this morning)

8. 2 two hour naps (thanks to driving time) in like 6 months

9. never cried once while we were there- 3.5 hours of over-stimulation and loving it!  He probably clapped for a total of 80 minutes throughout our stay. 

10. Swedish cinnamon buns & meatballs- obviously, not in the same bite- but given his cheek size, I am sure some remnants got mixed together during the "gumming" process

And why did we make this 2 hour pilgrimage?  To celebrate our 4th wedding anniversary!!  What better way to say I love you than to invest in a new love seat that doesn't smell like dog.  True makes the heart pitter patter.