Spring Afternoon in April

Did I say our boy is highly active on our last post?  Check this out!

How about that, huh?



Lucca is just dominating in the awesome department.  He continues to amaze us with his workout regiment, his appetite, and his capacity to love and be loved on.  The kid loves his people time.

Zahra is still holding on as the top big sister in the home.  With hugs on demand, plenty of smooches and oodles of entertainment value, Z has been a hit with her baby bro.

Shannon is growing things outside in the yard like a true mother nature.  Veggies are poking out, strawberry plants are looking to produce quite the batch and flowers abound.

Tommy is racing home each day to catch all of this.  My beautiful pair, Z hamming it up in mama's garden, "Look what I found!", apple blossom, the sleepy bear.

Highly Active

Lucca was an animal yesterday!  When I returned from work, he was as expressive and awake and active as he's ever been.  He was awake for a good while late in the afternoon to the early evening and Shannon and I couldn't put him down.  He was wiggling, observing, smiling, cooing, grabbing, gyrating, rocking and loving on us.  This allowed him to sleep better I believe.  He has been sleeping better anyhow and last night, crazy thunderstorms not withstanding, he did great.

We also met with our family specialist from the state who discussed further resources that are available for Lucca.  We hope to use her expertise in aligning us with other families with children who have Down Syndrome.  We also continue to await how we may qualify for Medicaid.

May is almost here and we are so happy with the warming weather and the progress our boy continues to make.  He continues to eat well.  He is draining mom much better than ever and is requiring less bottle feeding sessions since he is getting most of the milk out when he feeds.  He continues to pack on the pounds and is really strong and sturdy.  His legs have these incredible little calf muscles that are tight and pack a wallop for a little guy.  He is also exhibiting greater control of his head.

And of course, Z continues to love one her brother.  A day doesn't pass without me being thankful for this.  Enjoy the photos below of the boy and this video.

Look at that Foot!

Catching Up on the Weekends

The weekends now take on a much more special meaning.  Gone are the days when I could do everything during the week.  Now comes the reality of crammed work weeks and weekends that have to manage having fun with the mundane tasks of everyday life.  Yesterday was a prime example.

Things have been a blur since my mom left.  On the one hand its been great to have our home back.  On the other, we lost a full time housekeeper/chef/baby helper.  But such is life.  Saturday was a mad mix of hosting wonderful friends and their children while hitting the birthday party circuit of other wonderful friends.  And while we also chipped away at household tasks like our garden and laundry, we also had lots of fun hanging out.  The crushing blow is when we arrived at home around 6 PM exhausted and ready to crash.

Through it all, Lucca continues to amaze us.  He is so mellow and easy going.  But he's also very active and moves around when he is awake.  He's been alert and interested in everything around him. But he has a special place for the women in his life.  Whenever his mother is near, he springs into action.  Milk plays a huge role there of course but he also shares warm smiles with Shannon.  His sister also elicits a similar response.  He loves having her kiss his head and he also cranes his neck when he hears her voice.  We can't be any more thankful that Z has been a great big sister.  She really does help us out immensely.  Shannon is able to get ready during the week while Zahra "babysits" her brother.

And the weather has been glorious so far.  We're about to hit some big temperatures today and we expect to enjoy them at the park.  I am eagerly anticipating June and the freedom it will allow me to spend time with my family as well.  For now, the weekends will do.

I'm a Month Old!

Zahra Feeds Lucca

Click here for a lovely video.

More Doctor's Visits

Lucca had an unscheduled doctor's visit today.  We were concerned about a few things.  First off, Lucca is doing some weird head bobbing when he breathes.  The pediatrician did not hear anything in his lungs but had him referred to a pulmonologist.  Apparently he is doing something called "pulling" while he breathes.  It shouldn't be a big deal since the lungs sound good but you never know.

The other thing Lucca has brewing is a yeast infection near his tush (sure he'll love reading about this later on in life).  It's pretty nasty and we had to get a prescription for it.  Hopefully it will clear up in a few days.

The great news though is that he weighs in at 7 lbs 1 ounce!  Holy cow!  The kid is a chugging machine.

I survived the first day back at work.  38 more school days till summer.

We continue to have lots of friends coming to visit us this week for dinners.  We appreciate all of the love.

More Media to Enjoy!

Lucca knows one thing for certain...who his mama is.  Pretty amazing look on his face there, huh?  He really does know his mama well and they have a really strong communication between them.  Shannon can identify his cries and knows what he needs.  And of course, they both love each other dearly.

Zahra also loves her brother dearly.  It's such a pleasure to see her with him.  Here's an example of her performing for her brother.

Enjoy the Media

It's 4/20

Happy Beaster!  Well, our beer and egg hunt was rained out yesterday.  So we'll settle for just regular egg hunts during this Easter.  Hopefully I can post a ton of stuff after today.  Lucca is happy and fatter which is awesome.  Update to come.

Sleepy Time Blues

It's going to be hard once my mom leaves.  She's been the caretaker of Lucca in the evenings and while it's provided some much needed sleep, it may also set a dangerous precedent to live up to.  I begin work in two days (gulp) and thinking about having to be up late at night, then go deal with fifth graders is a scary proposition.  I looked at the last time I had to do that when Z was born and I scared myself with my postings.  Just part of the process, eh?

We're all here preparing for Beaster, the combination of easter egg hunts and beer.  Hopefully the weather holds out.  Lucca continues to eat up and chunk up.  Zahra and I had a nice daddy daughter day, taking in some ice cream and a movie.  Our little baby is now a big girl.  Kindergarten is just 3 short months away!

We're expecting more grandparents to show up in the next few days.  Stay tuned for pictures and video of the weekend's events shortly.

Tai Chi Lucca

Lucca working on his Tai Chi as part of a regimen to continue to develop more connections in his mind.  Or a three week old wiggling around.  You decide!

Click here for video.

Wintry Wednesday

Health update- There is a tiny hole in Lucca's heart that fortunately, is not much cause for concern right now.  He will be reassessed in about 6 months and they will give us either a new prognosis or stay the course of monitor and continue to leave the heart alone.  Shannon found out that Lucca will probably not be able to scuba dive ever.  More ceilings on Lucca the world will try and throw at him.

The weather was cold but it eventually led to a serene early Spring day in the mountains.  Shannon lost lots of plants outside to the frost she'd cultivated. I went in to work.  Z and Abuelita hung out.  And of course, Lucca...hanging hard all day long.  The boy is unflappable.  He continues to impress with the feeding.  He's easily at 6 lbs.  His whole body has become denser and is filling in.  Even his noggin is starting to expand a little, or so it seems.  And curious!  He loves to try and explore his world.  He "wiggles" and can lift that head up for longer stretches.  I make him spend lots of time on the tummy.  Sometimes it seems like I'm torturing the little guy with his complaints and cries.  Just some daddy love I guess.

We've also been reading on a project that looks to try and maximize the cognition and general well being of those who have Down Syndrome.  There is a chemical component to it that mixes ginkgo biloba and some other seemingly innocuous herbs.  But Prozac is also involved in this cocktail.

Here's a line that jumped out as I read it.  It was typed in a larger font paragraph that follows the history section of Prozac.

 The treatments discussed on this site are intended to prepare the brain to be capable of responding to education.

What kind of education and which type of curriculum we talking about here?  Well, as an educator, I know what they're talking about.  The kind that leads to higher learning.  At the college level that is.  Will that enhance Lucca's life as much as him learning how to read people and how to understand sarcasm and how to create bonds with others so that he will always have people around him who will love him?  It's a series of questions I hadn't given much thought to. 

Your two cents are welcomed (as I'm sure the Prozac people are thinking as well, though literally).  Here's the site.

Enjoy the picture of our two beloved children taken courtesy of Abuelita.  What a pair!

The Eyes Have It

Lucca's eyes are in tip top shape.  He received a clean bio of health from the ophthalmologist today.  He'll have yearly check ups to make sure things stay on target.  We hope to hear from the cardiologist tomorrow for the final word on his heart health.

Winter Weather Again?

We are expecting lows in the mid 20's tonight and some amazing wind chill.  Lucca continues to try and bring spring to our hearts though.  My mom arrived yesterday so we have some family support for another ten days.  The week brings more appointments and check ups for Lucca and even Zahra.  I'll update more info as we get it.  For now, enjoy these great pictures of our kids.

How Did Time Fly?

I felt like I posted not too long ago and it's already Sunday afternoon.

To recap a hectic weekend- Friday we took Luca to the follow up heart visit.  We are still waiting for a call this coming Monday or Tuesday to get the clean bill of health.  The technician who administered the sonogram did not notice anything abnormal so we are hopeful that heart hurdle is past us.  Zahra was picked up by our wonderful friends and spent time at parks, sleepovers and general happiness.  Not sure how time crept by but Shannon and I wrestled with sleep the last two days.  Mainly it's our fault as we are trying to veg on the couch and relax and take advantage of our time together.  The weather here has been gorgeous.  Spring has finally arrived.  We've also spent a lot of time outside in the garden area and cleaning and straightening out.  Just living the dream as they say.

My mother arrives Monday so hopefully I'll put together lots more video together to share.  We have appointments with the eye doctors and a meeting with some social services folks to help put Lucca in the prime position to receive as many services as possible.  It's also Zahra's spring break and my final week at home before I return to work.  For now, we will enjoy the sunshine and leisurely pace of a Sunday.

What a Day!

Not sure if it's the lack of work (forget I said that) or the need to achieve something, but I spent the morning staining the front deck.

Shannon accomplished some more tasks in her magical garden.  She was so happy that the day was lovely and warm with a slight cool breeze and plenty of sunshine.

Zahra had an awesome playdate with her hommies Asher and Braden.  She went to bed like a charm.

And Lucca...

"...what a strong kid, only two weeks old today at 3 AM and he continues to move around like a champ, working out this little muscles..."

"...eats like a champ..."

"...kid's poop is a never ending stream of healthy processing inside his little body..."

Best of all, Lucca is showing more awareness.  Seems as if his eyes are staring to pick us up more.  He's also in real harmony with mom.  Tonight, as he was being fed in this video, he'd made sure to communicate with his mom to let her know it was feeding time.

Enjoy the photos of Lucca hanging with E, feeding like a champ, and the talented young aspiring actress, Zahra.

Heart Looks Good So Far

Lucca passed all of the tests at the cardiologist today.  The only thing left is to have an ultrasound of his heart to make sure there are no lurking dangers.  The doctor was actually a little surprised he had Down Syndrome and commented on how strong Lucca was and how his muscle tone was so good.  We return Friday for the final heart test and if he passes this one, we will have cleared the most dangerous of the physical hurdles Lucca will face in his young life.

Oh No He Didn't!

Last night, Lucca went to bed with us at 10 PM.  He stayed in the bed for the entire night, didn't wake up to party as he had been, fed intermittently and is still asleep upstairs with mom.  I slept pretty well and if it had been a work day for me, I was pretty rested when 6 AM came around.

I've been in a pictured slump lately so I apologize for the lack of photos.  I'll pick up the slack here soon.

We continue to get visitors seeing Lucca and that has been very nice.  And we all went on our first walk together!  We busted out the fancy new stroller and took Lucca on a tour of his neighborhood.  We saw some of our neighbors and stopped by the West Asheville Tailgate Market.  While it was a cold walk, it warmed Shannon's heart.

Today we will go to the cardiologist and check in on Lucca's heart.  We'll update after that.

Aunt JuJi!

Aunt Julie is in town and we're laying low on a rainy Monday.  Lucca, Z and Shan are well and I'm recovering from a 4 AM bedtime.  Hopefully I'll get a chance to get more pictures up.  Shannon's Facebook has some good ones in case you want new stuff.  More to come.

Super Saturday

What a day we had yesterday!

It began with a garden day outside.  Mommy and Daddy worked outside digging up the ground, moving precious soil and relocating rocks.  Zahra pitched in as well.  Lucca enjoyed the sunshine in the safety of the car as temperatures were a bit cold.  We were outside all morning long and it reinvigorated us all.

After a delicious lunch, courtesy of leftovers from the meal train, Shannon and I took a peaceful nap with our son while Z played.

Then it got wild and crazy, or almost normal.  Shannon and I went on a date to see Captain America.  Ms. Paula, our wonderful pre K teacher came by to watch the kids.  With Zahra, this would have been unheard of.  We didn't leave that girl alone for months.  But with the second kid, we could relax.  Also, he's so chill!  And he feeds so well form a bottle that it didn't seem like a big deal.  In fact, the biggest deal was making sure Shannon didn't burst while we were watching the show.

When we arrived back at the house, we had another event; NCAA Basketball Madness.  vince and his kids stopped by to meet Lucca as did Cindy and Blakeman.  It felt normal again.  We had lots of friends come by and love on us.  It felt great.  Slowly but surely, our family is regaining that feeling of normal.

Here are some photos of Lucca Shannon took.  Enjoy!

What Day is it?

Notes from a sleepless dad.

Lucca loves to pee and poop on me.  He's a regular R. Kelly.  But the silver lining on this is that he's peeing and pooping regularly and well.  Probably because we are stuffing him full of milk.

Shannon is pumping enough milk to feed all of the hungry children in Haiti.  The milk factory has been providing Lucca with reliable sustenance.  The allowed him foreach his birth weight after only five days.  I foresee lots of growing in the next few weeks.

Zahra has been the best big sister (so far).  Her spirits have been soaring with the addition.  It only occurred to me later on, but Z was in a bit of a funk in the weeks leading up to the birth of Lucca.  She'd been having some sad times at school and had been difficult at home.  Nothing major mind you, but that's the thing.  We didn't even realize it.  Since her brother's birth, her teachers have noticed a much more positive kid.  At home, she has been much better with directions and general behaviors (of course it's still Z we're talking about here, she can be as stubborn as a mule).  I can't say this enough though; Lucca being here with us has been and will be awesome for his sister.  They will have one another for years to come.

I'm finding out how to play with the bounds of sleeplessness.  I pick and choose my nap times and nighttime sleeps.  Mostly I am everywhere doing as much as I can.  Free time?  What the heck is that?  But I knew this coming in.  It's amazing how much easier this is the second time around.  As a buddy of mine from Ultimate analogized- The first one is like the circus coming to town.  It's a huge spectacle and you're overwhelmed.  The second one is like an act being added to the circus.  It's still an amazing performance, but it's all part of the circus.



We continue to appreciate all of the love and support and the meals (Ride that MealTrain, baby!).  Looking forward to reconnecting with our Asheville Family and sharing our wonderful son with the world.

Back At It

Lots of updates.

Lucca is doing great.  He chugged his milk last night.  He slept well for the most part (he woke up around midnight and then partied all night long on and off).  As of this writing, mom and Lucca are catching up on some sleep.  The jaundice appears to be receding and we'll know more after another analysis.

Shannon has really been feeling better as well.  The magic elixir?  Gardening of course!  She spent some time in her beloved space during our glorious afternoon.

Zahra continues to have a great week.  She had ballet yesterday as well as a surprise visit from her teacher.  If you don't already know how much we love her preschool teacher, you will hear about it now.  Ms. Paula is the best.  Not only is she a great educator but is also a wonderful person.  She goes way beyond the call of duty in her profession and has helped Zahra out so much.  Ms. Paula took Z out yesterday afternoon to get some gifts for our family.  It was quality time to the fullest.

I actually got a good night's sleep last night, even after hanging with the boy for a few hours.  We all went to bed at about 8:30 PM so I made sleep happen.  I finally feel a little normal.

It's been a wild 48 hours but things seem to be settling down here.  Hopefully we'll be able to connect with all of our wonderful Asheville people in the coming days.  Lucca has a lot of people that want to meet him!

We All Feel Loved

Thanks to all of our family and friends for the outpouring of love and support.  We can't do this without you guys!

We spent our afternoon and evening together as a family, connecting with some friends and family and in the backyard enjoying some Seijezzali time with the gorgeous weather.  Enjoy the video!

47

That's the number of chromosomes our son was born with.  This means that he is a child with Down Syndrome.  What is Down Syndrome?  It is a condition that will impact his health, both physical and mental in ways we have to wait upon to see.  As of now, he is eating well, shows no signs of any immediate problems and is a regular kid.  In the future, he may experience some mild to moderate developmental delays and there are some health risks, primarily with his heart and eyes that have to be monitored.

When Lucca was born, Shannon and I both suspected that he had this condition.  We kept it inside.  Our boy was healthy and eating and pooping and doing things all infants do.  We received word today from the genetic tests.  Needless to say, we were floored with the news.  As of this entry, we are both still saddened by the news.

Fortunately, I tend to err on the side of positivity.  Lucca is not showing many of the signs that may possibly hurt him later in life.  His heart is currently strong and that is a big concern with children who are born with this condition.  His muscle tone is great.  His eyes are working well.  He is responding to stimuli as all his peers would.

Right now we are mourning the boy we thought we were having.  It's normal.  Crying is a good thing to do and it's been too damn long since I did it anyhow.  But I know my boy will be just fine.  He is going to live a healthy and hearty life.  He will be loved by his family.  He will be given opportunities to do what all other kids will do.  How do I know that?  Because what's my alternative?  To sit and mope?  To get into a depressive state?  To show my son that I've given up on him?  Fuck that.

What happened to Lucca was something on a microcosmic level.  It will affect him minimally if it all.    I see it as a chance for our family to grow.  I'll tell you this much, he will still have to learn how to deal with this thing called life.  Every thing on Earth does.  I think he'll do just fine.

Grammy Leaves, We Take Lucca for More Tests, April Begins

It's been a day today for the Seijezzali clan.  Sadly, we had to say farewell to Grammy Lanie as she made her way back down south to Atlanta.  Lucca had another nice morning of eating, pooping and sleeping.  The poo is out of the nasty black tar phase and into the yellow squash.  He even throws in some scrambled egg looking stuff from time to time.

But the big news for the day was taking Lucca to get more blood drawn to check for jaundice.  We were able to get to the lab and have that done before our doctor's visit.  Hopefully we will get a good report tomorrow.  As far as I can tell, he seems pretty good though he sure does like to sleep a lot.  

I was able to get out today.  I took Zahra to a Hall Fletcher fundraiser at Wild Wing Cafe.  It was nice to see my teammates in a relaxed social situation.  Z got in some great play time as well.  Shannon got to spend some time with Lucca while we were out.  It was the classic man to man defense played by parents with two kids.  I get the girl, she gets the boy. 

Enjoy a few more pictures of Lucca doing what he does best and the girls doing chores together.

Lucca and Zahra Growing

Check out this comparison of our kids.  Lucca's shot is taken four days after his birth.  So is Zahra's.

Same dog doll (Shannon's from her childhood).