Right Before the Earthquake

Tomorrow is the anniversary of Virginia's earthquake which means today is the day we brought our son home one year ago!  I can remember how excited we were to drive up to our building, FINALLY with our baby in the backseat after a four-week NICU stay.  The next two weeks, although exhausting with round-the-clock gravity bolus naso-gastric feeds (feeding every three hours by holding a syringe attached to his nose-stomach tube, pouring milk into the syringe which entered via gravity) were fabulous!  Instead of driving 30 min + to see our son, we could hold him whenever we wanted!  He was able to leave his small NICU bassinet behind and explore the fun things we had for him (like Daddy's fabulous black and white drawings that kept James enthralled for hours).

Before James' first birthday Mark and I looked through the early pictures of James.  We had a hard time viewing the ones from these first two weeks of his home life as we forgot how terrible his breathing was, how pale he looked.  These pictures brought back difficult memories.  We couldn't believe we were talking to James as if everything was fine, we forgot that was our "normal" (Although, it was and it wasn't.  Some of the breathing issues were normal, but he soon developed an infection that sent him back to the hospital. We spent the second week of his home stay trying to figure out what was wrong until, finally, his pediatrician realized something wasn't right and sent us back to the hospital).

We are so happy to have those times behind us.  I love realizing how far we have come as I listen to Mark and James chat and James burst into his cute chuckle.  Check out the difference between our boy last year and this year:

Attacking his pictures.

One of his favorite funny faces!

Great pic from today.  His hair looks cute like Uncle John's.

With love.

Attention Withdrawl

James loves being the center of attention.  And a five day beach vacation with my family equals plenty of attention for our little man.

Unfortunately, after times like these, James wants attention all the time and he has to go through a few days of withdrawal before he is back to his normal, chill self.  We know this is the case when James whines and cries, we walk over to check on him and he breaks into smiles and claps.  Then, as soon as we walk away he cries again.  It makes for a fun few days.  But, it makes me happy to have problems like these.  James is a normal little kid!

James had some quality time with his uncle while on vacation.  Their favorite activity?  Watching the Nationals WIN!

James loves watching the games.  We hope to take him to see one live!

More teeth are coming in!  

More soon.

With love.

Fangs

James officially has a tooth!  To be honest, I didn't know it was there until he was laying on the doctor's table today, chewing my fingers while I talked and my nail was pierced by something.  I couldn't figure out what happened, there couldn't be a tooth back there, only his little front tooth is trying to poke through!  But, when I had a chance to check, I found a FANG growing toward the back of his gums.  I couldn't believe it.  It seriously looks like a fang.

We had heard early on (like day 3 of James' life as I poured over the Babies with Down Syndrome A New Parent's Guide book) that James would, most likely, get teeth later than normal and that they may appear in random order.  We were prepared for this, but I wasn't prepared for the surprise of being pierced this early on by what appears to be a canine or molar.  I just wonder how long it has been there!

I couldn't get a great picture, but check it out:

His "fang."

The fang doesn't bother him!

We just got our Vitamix!!!!!  More on that later.

With love.

Beach Boy

It is wonderful to see life "normalling out" for our one-year-old.  He has done many firsts: first swim, first plane ride, first tooth (not quite in yet, will let you know), first solids, and now his first trip to the beach!  We increasingly understand the importance of a normal life no matter the limitations of James' feeding tube.  We just have to find creative ways to make the challenges work.

It is a challenge traveling with any child, but we had head-scratching moments when it came to caring for James' differences on the beach.  Since he can't sit it looked like playing in the sand and water was out.  We were also worried about finding a suitable way to feed him on the beach without getting sand in everything.  Unfortunately, there wasn't much of a solution when it came to sitting.  I did let him lay on his stomach on the edge of a large blanket and put his hands in the sand.  That didn't last long as his eyes and mouth were much too close to the grainy substance.  We tried carrying him into the ocean, but the water was surprising cold for an East Coast beach in August so he wasn't too fond of that.  We did find that he enjoyed laying with me on the blanket, watching the waves and listening to everything that was going on.  I guess he is a true beach bum.  And, when it came to feeding, draw-string sport bags came to the rescue!  It was easy to pack and carry all his feeding supplies (machine, syringes, oral food) and the material kept the sand and water out.  And, when it came time to hook him up to the pump, we could keep the machine in the bag and just run the tubing out the top.  We did have to bring his car seat down to keep him in place while he ate, but it worked great for his mid-meal nap!

By the third day we ditched his bathing suit all together.  He received cute trunks from his Aunt Nancy and we bought a rash guard to cover his tube, but James still can't do the shirt-pants combo without scratching or pulling on his tube and we couldn't risk the sand getting in!  We ended up just using a one-piece tank outfit.  Luckily, sand isn't much of an issue in the clean pool so he will get good use out of his cute bathing outfit!

Even with these questions it almost felt easier to travel with James for five days than it did for an afternoon out, reason being we were taking suitcases and could just pile multiples of everything we thought we might possibly, remotely, probably not need into the back of the car (including that nebulizer that, luckily, hasn't made an appearance since March).  And I had Mark to help me.  And we made lists, lots of lists, and checked them twice, more like ten times.

We are very lucky that James loves the car, it made for an easy ride.  He loves the windows rolled down (I wonder where he got that from?) and his new favorite thing is to throw his hands in the air like he is on a roller-coaster.  I'll post a video of this when I finish editing.

It was great to vacation with my family, another fun, normal first with James.  He loved all the attention!

Check out our beach boy:

Sunbathing with Mommy.

Putting his feet up in the car seat.

With love.

This Is What Our One Year Old Looks Like

He liked his watermelon italian ice.  :D



With love.

Happy 1st Birthday, James!!!

Look at the stars, look how they shine for you

And everything you do,

Yeah they were all yellow...

Your skin, your skin and bones

Turn into something beautiful.

You know I, 

You know I love you so, you know I love you so.

I swam across, I jumped across for you,

Oh what a thing to do

'Cuz you were all yellow...

You know,

For you I'd bleed myself dry, for you I'd bleed myself dry.

When James was in the hospital for heart surgery I had a few special songs I would sing to comfort him.  Although he preferred Wagon Wheel, this one was my favorite.  I've always liked the song, but it had new meaning in our situation.  I still love to sing for him when I tuck him in at night and, although I don't always remember the correct words, the sentiment of this song means a lot.

It is amazing to look back over the year and everything James has been through: learning to eat, having a feeding tube in his nose, physical therapy, a virus that sent him to the hospital, a "tet spell," g-tube placement surgery (twice), more physical therapy, heart surgery, speech and feeding therapy, several ER visits, winter isolation, a g-tube lodged in his intestinal valve, more physical therapy, and learning to eat again.

I really admire our son.  He has been so brave and happy through everything.  He has truly taught us to appreciate life.

To be honest, I didn't think we would make it to his first birthday.  I can't count the number of times we received terrifying predictions and diagnoses from doctors, but James has proved everyone wrong.

We thank God for our beautiful son (even when he wakes up and screams at 4:30AM) and can't wait to see what this next year has in store.  Thank you all for your support and love!

Check out his early morning birthday dance party:

With love.

Spoonfuls and Mohawks

James is learning to eat extremely well and receives interesting fashion advice from his dad.  Check it out:

P.S.  The weird rumbling noise in the background is Mark attempting to coax life out of our Magic Bullet.

With love.