My son, the humming bird

A little time lapse goes a long way- the kid looks like he's about to take flight!  He swings his arms when he is excited.  Obviously, he's pretty stoked in this photo.

Sunny Saturday

The real blogger...

"I like to dance!"

So, do you think Miles has got a shot at being a back-up dancer on "Yo Gabba Gabba"?  I think Brobee might be his best friend, if friends could be battery-powered monsters.  Actually, I have no clue what species, or even if the term "species" applies when describing Brobee.  Whatever he is- the kid is crazy about the critter.  I think Jesse and I get an equal kick out of watching the show.  Catch it on Nick, Jr- it's appealing on some many different levels. 

Do you like the new decorations on the mirror behind Miles?  There was a little life left in my paint pens, and I felt like an ode to the Ugly Dolls was due.  Toss in a Yo Gabba Gabba-ian, and we've got ourselves a regular monster jamboree.  Visually stimulating for sure...

Last item of note- in the clip, Miles is sitting on our inflatable camping pads.  Since his balance is still not at a 100%, the pads ease the trauma of tilting over.  In fact, there is no scariness at all.  Miles' head remains bump free, as long as I remember to put the pads down prior to playtime.

Empowered

As I sat in pin-dropping silence with my 5th period class, I couldn't help but look over the heads of the transfixed teens- watching them lock on to some of the most powerful and encouraging words I have ever heard.  President Obama's eloquence, power, and grace took my breath away.  I only hope that my students will recognize a new world of possibilities that await them, that they will develop the courage to face difficult decisions with knowledge and patience, and that they believe in themselves and their talents.  

Originally, I wanted to be among the masses in D.C.  I thought the magic would be among the millions.  I was wrong; my classroom couldn't have been a better setting.  I saw history unfold with its intended audience, the next generation.  A generation given a charge, a mission, and a new hope.  What an awesome sight it was.  I watched the Inauguration with our future, the potential of our nation.  

Now we must wait and watch them fulfill the destiny- the destiny that was charted out on this electrified January day by a new voice, an empowered voice.  

A Robert Frost kind of morning (minus the snow)

Taken from my front yard about an hour ago- the serenity is overwhelming.  I am home with Miles today, and we are celebrating MLK day with some MLK birthday cupcakes.  (Seriously, my family has baked birthday cakes for Dr. King since I was a wee one.  Strawberry cake at that.)  Dr. King is a personal hero, as is the man being sworn in tomorrow morning.  I am bursting with pride and excitement.  These are dark times in the education world.  Instructional positions are being cut, programs are being trimmed back or totally slashed- our budget is in the red.  President-elect Obama has said some very encouraging statements about making education a top priority.  Now there's a man after my own heart.  

Uncle Clark, along with a whole host of our extended family, is bundling up to brave the chilly air tomorrow in D.C.  I am all shades of green; I wish I could be there with my own little family.  As of now, we will snuggle in and watch a new era begin from our couch.  At least Miles voted.

This is a perfect morning for being reflective and patient.  Here's hoping that a snow day will let me stay home and cheer on the Inauguration.  Otherwise, I will being preparing for semester exams- of which I need to finish writing this morning.  So far, Miles (and all of the pre-Inauguration programming) is infinitely more entertaining than the 8 parts of speech.  That's a no brainer.

Seems like only yesterday

Not very productive

He hasn't coughed out any mucus.  In fact, Miles is sounding worse today, in terms of stuffiness and lung congestion, that he did yesterday.  Also, he's now running a (very) low grade fever- but he's got that fevered two mile stare going on.  And he's having longer coughing spells.  Oi!  Little man needs a break.

Has anyone ever given their child Cardec DM?  This was prescribed to help with the congestion; I've got the feeling that it's not helping at all.

In tummy news- Jesse and I just remembered that we have to reintroduce wheat into Miles' diet before his next GI appointment.  She agreed to do the Celiac screening then, but it won't work if he has been eating wheat.  We started back to days ago, and I don't think we can make it to February 12th.  He has been soooo gassy.  On numerous occasions- we've got him sleeping in a triangle pose- buns aimed sky high and little tummy all scrunched up.  

I hope someday Miles will be cool with me sharing updates about his gas with folks I've never met.  This thought does cross my mind every so often.  Is blogging like having your parents whip out baby pictures to a new boyfriend- times a billion?  Even so, I've gained so much from this site.   I let out the bad and accept the good; I get great advice.  And I feel the love and support I so desperately need at times.  Thanks everybody! 

p.s. In a month and a half, Miles will be a year old.  Zoinks, Shaggy!

What is a productive cough?

We should be in the final throws of the pneumonia.  A cough,  not too loud or barky, has emerged in the past few days.  Doc said Miles would "cough it out"- and "it" I guess refers to the pneumonia, and the cough should be productive.  He seems a little sickly tonight- no fever, but pretty grumpy, and the reflux is kicking into high gear.  Bet the cough could be reflux relate- but I do hear some chest rumblings with some of the louder coughs.  How do I know that this is a productive cough or something else?  I am getting a little worried.

Pregnancy setting

My car's outdoor thermometer read 25 degrees.  I was feeling toasty, not shivery.  Then it dawned on me- my internal radiator must stuck on pregnancy setting.  I spent three trimesters with a sauna stuck under my skin.  It's not as searing as it used to be- though it doesn't take much to make me feel overheated.  Just hope my core chills out a bit before summer rolls around, but for now- I'll enjoy the built-in boiler maker. 

Heart health...some good news

Good news on the medical front:  Miles had an amazing check-up with his cardiologist today.  His ultrasound revealed that his ticker has healed beautifully.  He might need a cath in a few years if his right pulmonary doesn't grow, but that will not be as complicated as this summer's surgery.  I cried because I was so happy to hear this news.  Though I am not currently crying, I couldn't be happier. 

We won't have to see his cardiologist for another two years.  Wow.

High-Fives for All

Obviously, yesterday was laundry day.  This should explain the robot t-shirt/ froggy pants/ orange argyle socks combo.  But what is infinitely cooler than Miles' last resort ensemble is the fact that this kid gives high-fives.  Jesse is the high-five dojo in the household, and Miles is his little grasshopper.  And I thought I was the only teacher under the roof. 

Maybe by Miles' first birthday Jesse will have taught him how to do the Super Bowl Shuffle.  Don't think that he won't try.  Don't doubt that my eyes will be heavily rolling, though I will be beaming on the inside.  Daddy 'n' Baby bonding is so special.  I am honored that they let me tag along during their dude time.  

Speaking of football- I am sitting here watching all of that glorious snow in Pittsburgh, and I am green with envy.  I seriously doubt that I'll ever get a snow day as a teacher.  And tomorrow would be a perfect snow day.  Wait, now that I think about is, any day would be a perfect snow day.  It would take much white stuff to shut down our town- maybe a 1/4" and some dark clouds.

  

What ten months looks like

Right after Christmas, we took a quick day trip to Va Beach.  Jesse needed to run an errand near the ocean front.  The weather was too nice to pass up, and beach time in the winter is my favorite time.  Quite.  Intimate.  Brisk.  We had a lovely time soaking up the winter solstice.  Though shy of ten months in these pictures, Miles is that and two days.  Lovebug is growing by leaps and bounds, and he's gnawing on my forearm as I type.  

Breaking down. Building up.

Yesterday, after we got home from the hospital, I should have been relieved and thankful.  Instead of positive feelings, a darkness washed over my heart.  I couldn't hold on to the happiness of the moment.  Fear.  Depression.  And more fear.  That's what was calling the shots in my exhausted brain.  

Fear- I remembered that there was another medical issue that we'd need to deal with once the pneumonia got in check.  Looks like Miles has some late appearing Epstein pearls on the roof of his mouth.  Very late arriving.  They should have been here 9 months ago and gone 8 months ago.  If they are normal Epstein pearls, then no medical treatment will be needed.  But since these spots do not correlate to traditional medical time lines, I am freaking out a bit.  Does Miles have oral cysts that will need surgery?  I don't know.  His pediatrician wants to wait.  I want her to check with a pediatric orthodontist.  She agreed to my request today and will follow up with a colleague.  She's a great doctor who is willing to help Miles with anything. 

Depression: I am still sorting out the emotional trauma of Miles' heart surgery.  Will I ever come to terms with that fear?  Anger at myself for not having resolved my guilt over Miles having Down Syndrome.  Disappointment in myself because I am not more optimistic.  Very ironic, I know.  Depressed that I am depressed.  Ugh! 

Back to the fear: Are we going to live from one medical emergency to the next?  What good news will I ever get to share about Miles' health?  What does the future hold for my family?  Will I be strong enough to support Miles and Jesse?

A classic Anna tailspin.  When something scary happens, like Miles' hospitalization, I bottle everything up until the end.  I pretend to be stronger than I really am.  Coping strategy, for sure, but I need to devise a healthier method.  Especially since we are starting down a long road of many ups and downs.  I need to remember that being courageous does not mean acting courageous.

I started reading my first parent account DS book today.  I have been hesitant to read most personal stories because I don't want to compare our situation to theirs.  I started shortly after Miles' diagnosis, and I wasn't ready.  However, after coming to terms with my feelings from yesterday and realizing I have a whole host of other issues to sort out, I decided to see how someone else did it.  I am reading Life as We Know It by Michael Berube.  A friend lent me her copy months ago.  Today, by page 70, I understand why she wanted me to read this book.  When I am done, I will post my thoughts.      

On a positive note: Miles' follow-up appointment went well.  He is to continue the antibiotics for 6 more days.  His energy and spirit has returned full force.  In spite of my struggles, I know a miracle when I see one- and I just kissed one good night.

We are home.

Miles chowed down on 5 ounces of formula this morning, thus making hospital bail.  Jesse and I are sitting on our sofa now, dazed from the last 72 hours.  I can't believe how quickly Miles went feeling fine to being utterly wiped out.  From having cold symptoms Saturday morning to being diagnosed with pneumonia and dehydration on Sunday night has left our heads spinning.  In the back of my mind, I am scared that this will be the trend for colds- that upper respiratory infections will quickly lead to bigger troubles.  Miles has already been vaccinated for some types of pneumonia, but I've got to remember that he will never be fully protected.  As much as I secretly want it, I know making Miles a "bubble boy" will only lead to more problems.  I've never been a germaphobe- though never say never.  Knee-jerking must be a typical parental reaction to scares like this... or at least I hope this reaction is normal.  Obligatory silver lining- I've become a ninja at rectal temperature taking and nasal aspirating.  Not to saying that I enjoy either of these tasks because I really don't!  

Little man has transitioned home well.  He's napping, so why am I awake and typing?  Lemme run and catch some Zzzzz's.   

Update on the update

It's almost 10 pm; little man Miles is asleep, though not in his own bed.  If he continues at his current rate of recovery, we will surely be home tomorrow.  The evening had its ups and downs, but mostly ups.  On the huge plus side, he has been taken off IV fluids again.  Downside, he's off because no other vein could be found.  I am wishing on every star in our cloudy and cold sky that Miles will start drinking more.  I was able to get two ounces of a Pedialite 'n' pear juice cocktail in him earlier.  And moments before passing out, he slurped two ounces of his yummy soy formula.  I doubt that this is enough liquids to count as healthy, but at least he is headed in the right direction.  More in the morning. 

Update

Miles was admitted into the hospital yesterday.  His lack of wet diapers and low blood sugar nudged us in that direction.  His pneumonia is responding well to the antibiotics.  However, Miles still will not drink on his own.  He was taken off the IV late this morning, but since he won't drink independently, the IV was started again.  We are spending another night in the hospital- just to be on the safe side.  And besides, if we had to come back, there would be no vein for them to stick.  Yesterday, only one could be found for the IV- that's it!  Miles' arms and legs are so chunky; all you can find is more chunk under the chunk.  Now that he is in pretty good spirits- still flirting up a storm.  He's been fairly happy, except when his temperature is being checked.  Can you blame him?  Wish us luck!

Down for the Count- the crud has morphed

Around eleven last night we learned that Miles' cold has turned into pneumonia.  Our trip to urgent care did little to alleviate his discomfort, and nothing seemed to quell his fever.  I watch that thermometer jump from 99.6 to 101.3 to 102.7 to 103.4- and that's where we decided to go to the hospital.  The on-call nurses and doctor told us that we didn't need to go, but the fact the Miles was refusing fluids and not cooling down.  And once we got to the hospital I felt they were probably right.  In triage, Miles' temp had dropped down to 101.6, and he oxygen level was at 100%.  Everybody kept asking if it was croup, as if this could be the only explanation for his fussiness.  (And pneumonia was quickly ruled out on Friday.)  Miles was hilarious in the ER.  He was tracking people who passed by our room, but the curtain kept blocking his view.  So he would crane his entire body to get a better view.  Much funnier to witness because his timing was right on.  Luckily, we packed a few toys.  And played, in between nose swabs, medications, and x-rays, right up to midnight.  I am very thankful that we did go to the ER because who knows if the pediatrician would have caught the pneumonia during the office visit today, especially without an x-ray.  Kudos to Jesse for insisting we go instead of waiting things out.  Miles is still hot today.  The last reading I got was around 101, but the thermometer died on the job.  I know Miles was glad to have his buns freed for a bit.  The mucus is heavier than ever, but he was able to drink 3 ounces of Pedialite!  A huge accomplishment because he wasn't taking more than an ounce or so at each feeding, and he has totally refused solid foods.  But best of all- I changed a wet diaper around 9 am.  He hadn't been wet since 6 pm yesterday- very scary.  The ER doc told us to come back in the morning if he didn't have 2 wet diapers by then, but his regular doc said to wait until 2 pm and come into her office for a check-up.  We have decided to wait to see his doctor because she knows him best, though the ER doc from last night was awesome.  She was observant, thorough, listened well, and was fast!  Two thumbs up from two very tired parents.  Miles is starting to wake up from his am nap- more details later.   

the creepin' crud

Miles has his first ever cold, and it's a whopper.  Around 3 last night, we were awoken by a piercing scream.  Miles never does this; he might fuss a bit- but he's easily coaxed back to sleep.  However, he hollered until close to 6 am.  He was running a low grade fever, but I just chalked it up to him being to warm in his jammies and blanket.  Everything seemed fine later this morning.  He ate well, took a good morning nap, and was in a decent mood.  The proverbial poopy diaper hit the fan around 10:30.  The same crying from last night started up.  His fever had also gone up to 101.6 degrees.  Our on-call pediatrician sent us to the nearest urgent care to tie Miles over until Monday.  Apparently our regular doctor does have Saturday morning hours, and I heard two people too many that we should have called earlier.  Um, hello- he was feeling fine earlier.  Comments like that are very unhelpful, especially when you are stressed out over a sick child.  Anyways- the trip to the urgent care went pretty well, except that they really don't know anything about infants.  Like how to properly take temperature, weight, etc.  We were asked for ball park figures on both.  The doc, though friendly, took the anti-biotic cop-out route.  When in doubt, call in the anti-biotic.  A philosophy of which I am not a fan.  Anyways, what he really needed was a decongestant.  I asked the urgent care doc to contact the on-call pediatrician and run her plan by him.  I am soooooooo glad I asked her to do that because the other doc changed the prescription.  He said hold off on the anti-biotic and try a decongestant first.  

The remainder of the day has been pretty tough.  The fever is slowly dropping, but the stuffiness is picking up.  It's nearing ten thirty, and he's getting restless again.  I think Miles was only asleep for 30 minutes, tops.  Jesse is up there now- relieving me from my sick duty.  It's actually tough to detach myself when Miles is feeling bad- like I have kicked into Mama Bear mode, and I am out to protect my cub and maul anyone who stands in the way.  Oh, an angry squeal on the monitor- let me run.  A mama bear's work is never done!