Monday, July 30, 2012

Houston: Success

I'm not sure if we would have ever gotten up the nerve to taken a voluntary family vacation, so this trip to Houston to see the neurologist was a little scary but a great success.  To our surprise everyone, including Dominic did great traveling!  It only took us 8 hours to make a 4 hour trip, but considering, I say that's not too bad :).  Here you go: our first official trip as a family!

 Dominic slept the entire way to Houston.  Awesomeness.

 We had to stop at the giant statue of Sam Houston for a little leg stretching and history lesson.  And of course, what did our kids do after our lesson?  Stick their fingers in the ear and nose of Ol' Sam :/

I unknowingly laid in an ant pile for this awesome picture.  You're welcome.

 Thanks to Aunt Jenny, the kids had a great time with all sorts of fun trip goodies.  Once again, finger in the nose...  my kids...

There is no picture of this because I was laughing too hard, but when we got to our hotel the kids went crazy running around the suite.  They were in complete amazement at the fact that it had not 1 but 2 TV's, 2 phones, a smoke detector, a table, a radio, and get this, our VERY OWN TOILET!  They were running around yelling "we're rich, we're rich!  We have our own toilet!"  Of course they were not at all impressed at how clean it was or the full kitchen we had. 

Mike then told them the hotel really liked it when kids jumped on their beds, so they all became little monkeys, jumping from bed to bed.  Who needs amusement parks when you have hotel beds!  Ah, to be a kid.

Just a bit after we arrived in Houston we went to the Aquarium.  It was pretty cheap too considering we didn't have to pay for parking because we're "handi" as Anthony said (he meant we have a handicapped license plate).  After all, being handi has it's perks :)

 Dominic wasn't as impressed with the fish as the big kids were, but I still think he had fun.

 He liked the lights from the sunken treasure room

This is the biggest snake Mike and I have ever seen...  ugh-h-h-h, gives me the willies! 

The petting tank where Mary begged to pet sting rays, Jake happily did so when offered, and Anthony was made to though he was not happy about it at first. That's their personalities right there.

After dinner at the coolest restaurant we've ever been to!

The next day we had our appointment at Texas Children's with Dr. Fernandez.  I was so relieved when he walked in and had grey hair!  I later told Mike I wouldn't mind one bit if he was my Mexican Grandpa (I've always secretly wanted a black grandma and a Mexican grandpa.  The grandma would be the best hugger and the grandpa would sit and tell stories for hours.  Hmmm, maybe that's TMI...).  He spent over an hour with us, doing the most detailed history, assessment, and physical we've ever had.  He took the medical records and MRI scans and had the neuro-radiologist read them.  They came to some of the same conclusions that Cook's has but had a little better idea of prognosis and will be able to tell more once Dominic's genes come back from the whole exome sequencing.  He said he wants all follow up MRI's to be done in Houston since they see this sort of thing so much, the neuro-radiologist there are very specific about technique.  All in all we are very happy with this doctor.  The visit was definitely worth while.

This is Texas Children's in the Medical District.  This picture does not do this complex justice.  It is the biggest medical complex I have ever seen.  The buildings here are three of the towers of TX Children's.  There's another hiding behind these.  There at so many hospitals there, it's just crazy.

After the appointment we grabbed some lunch and headed to the beach.  We were there for about two hours and that was plenty for us!  We love the beach, but in our new lives, we are no longer beach people.  It's just not the best spot for a trach baby.  Despite our best efforts, sand got in his Go-bag with all the emergency equipment, not to mention in his pants and trach collar.  Dominic did really well though and sat on my lap in the tide so his feet could touch the water.  I say that counts as his first official "swim" in the ocean :)

Mary loved the sand!  She's my mud bug. 

Anthony making sand angels... cause laying in 100 degree sand is sooooo fun! 

 Dominic chillin' at the beach

 Finally he opened his eyes

 ... And he's asleep again!  The sun was just too much for his chubbiness.

 Mike was a good sport letting the kids bury him.  Not bad for someone who hates the sand!

 Then it was Jake's turn.  During this Anthony was running as fast as he could in the sand so he could watch the sand fly behind him.  He was screaming "Mom, look how fast I'm going!"

The last day we went to NASA but I forgot my camera, so you'll just have to imagine.  This trip was so important for us to have our first time alone as a family doing something really big.  We proved to ourselves that we can do it and built confidence as a family to take on the world. 

Saturday, July 21, 2012

Houston, we have a problem...

...And we're hoping you can help us out.  See, we have this sweet little man named Dominic that seems to be a medical marvel, or is it medical mystery?  The docs up here in ol' Fort Worth don't seem to know what in the world is going on within his cranium, so we're coming to you, hoping you can help.  An answer would be nice, or even a hint to an answer, or if you can't do that, maybe you can just say you've seen this before and it's no big deal.  Brains shrink all the time, after all.  And please, dear Doc south of us, take your time.  I've spent many hours preparing for this trip, was nice to people who didn't deserve it (I'm working on that) getting all his records in a timely fashion, and am fully prepared with a medical history typed out for you (Neurotic?  Nah, I say organized).  Please appreciate the insane amount of effort it takes to travel with our little man.  Do you realize how much medical equipment we're bringing with us?  We'll be transforming the Holiday Inn into a mobile ICU room, so just in case your ER fills up feel free to come on over.  In fact, we have so much equipment, we are trading cars with a sweet girl that calls you home, a Houston transplant that tolerates North Texas, cause she loves a boy who loves it here.  Well, maybe she loves it here too, but not as much as you, don't worry.  That sweet girl has the mother of all cars... a suburban.  Still, it'll be tight, but we can do it for 5 hours, you're not that far.

We're a little optimistic up here, though we are realist too.  We fully expect to be going to Boston soon when you say you have no idea, but we sure would be grateful if you could spare us that expense.  We're looking on the bright side of this trip and bringing along all 4 of the kidlettes.  That's right, 4.  Don't worry, they are very well behaved in doctor's offices and I promise they won't lick the neurologist (though I can not vouch for the examination table... it's on it's own).  Please don't be alarmed if one of them is upside down when the doc comes in, it happens.  Just be grateful if they are fully dressed and moderately quiet.  That's right, we're that family.   But after that, we're blowing off the Children's hospital and heading out on the town.  We're going to see what your great city has to offer, a mini-vacation if you will.

Be good to us Dear Houston, because you see I have this blog, and late at night I have a hard time controlling what comes from these fingers.  I sure would like to sing your praises as the great city that has the world's most amazing doctor that has an answer.  Not for our own sake, but for the sake of a little boy named Dominic.  The world deserves to have him as long as it can, he brings so much light.

We'll be seeing you in T-2 days.

In Them,
his mom

 His Sissy sure does love him...
...And most of the time he loves her :/
But what he really loves is riding in PawPaw's Big Red Truck

Tuesday, July 17, 2012

A year in pictures

It's hard to believe our little Saint Dominic is 1 year old now!  This has been both the longest and shortest year of our lives, but most importantly, this has been a year of learning, trusting, surrendering, accepting, and loving.   In his short life Baby Dominic has taught us so much: what it means to live, to be a person, to have worth, to suffer, to be joyful.  We have been destroyed, raised up, learned to fight, found our voice.  There have been times of utter dismay, brokenness, defeat but they are always followed by the graces needed to get back up and journey on.  We have learned foremost to not put off what is important.  We don't wait to do what God is calling us to.  We do it now, as best we're able, because our future is unknown.  Dominic has turned our lives upside down, and that's a good thing.  He is a soldier, winning souls, preaching without words.  How we ever deserved him is a mystery, but one we are so thankful came into being. 

 Immediately after birth, before we knew anything was wrong. 
This is the look any mother knows, a mix of joy and relief after a hard labor.
After a few seconds the midwife took Dominic from me and started bagging him.  The NICU team ran in and assessed him.  This is where the nurse started calling out his dysmorphic features, I knew.
Our first time to really see Dominic.  This is not disappointment,
this is me knowing our life has changed.  Mike later told me at this point he did not
know anything was wrong.  He just thought he had a hard time breathing at first.
 He was stabilized and brought to the NICU for a 1 hour observation.
That 1 hour turned into 5 weeks. 
Dominic after a couple weeks in the NICU, intubated after surgery
 Finally extubated with just a "whif" of oxygen, close to going home!
 Mary meeting her baby Bubba up close for the first time
(excect for his baptism when he was 2 days old)
 Home lasted 1 weeks, then back in the hospital. 
He's having a sleep study here, pre-trach
After he woke up with his trach.  We were in the PICU
for several weeks, well two, but it felt longer! 
 Up in the teaching unit, Mike, my mom, and myself learned how to care for Dominic.
We were admitted for a total of 10 weeks this time.
 Meanwhile at home, the other kids needed love too!  Our families and friends helped us so much
during this time, the kids were no worse for the wear.
 Dominicin his new wheels... and our first walk out in the hall!
 Our first walk around the unit as a family, oh happy day!
 Discharge day!  The friars helped us out and witnessed the
awkwardness that was getting him loaded for the first time.
 His very first car ride!  We weren't nervous...
We were petrified!  Everyone else was driving SO fast!
 Our first walk to my sisters house,
accompanied by my brother and niece Leah.
 Enjoying being home, ahhhhhh.
 Our very first dinner as a family, thanks to my mom's
yummy cooking!  As you can see here, Mike fell off
his rocker somewhere during this time and shaved his head.
I thought he looked handsome ;)
 MiMi learning the ropes of giving g-button feedings while I was driving.
I laughed so hard I almost crashed!  She on the other hand was not too
excited about being covered in my breast milk!  :)
 Baby Bubba getting some love
 Our weeks were filled with doctors appointments and tests
 Dominic holding his great Granny"s hand
 It's a tradition that every grandchild puts an ornament on MiMi and PawPaw's tree.
 What every momma loves, cuddling with her babies.
 ... And what every Daddy loves, sleeping with his baby...
 Brief admission for sickness... back to the PICU.
 Dominic being held by his Great Granny for the last time.  She passed away days after this.
This day brought her so much happiness before she went.  We miss you Granny.
 Dominic's first time in the back yard... crazy driver!
  In his bouncy seat
 So handsome with his old man hat on :)  Looks like PawPaw
 This year he made some best friends... the friars.  Admissions have their perks after all.
This was a sick admission, 7 days.
 His very first Easter!
 The right of every Daddy.  And just so you know, Mike doesn't always sleep,
it's just the the sleeping pictures are my favorite.
 This pretty much sums up our year... ICU hospital room with Mike drinking coffee :)
 Nana with a g-button feeding blow out... she smelled like broccoli... so funny!
 Lots of therapy.  Here is Dominic with his OT learning to play with toys.
 And more appointments.  Here is Dominic getting fitted for foot braces.
 This last admission, Dominic was trying to escape!
 And oh happy day, vent free!
 Mimi showing him outside during her first time to walk with him vent free
 And my favorite thing to do with babies... sink baths!  Here is Dominic's first one after his
big boy haircut.  Notice the delicious rolls :)
 And we're mobile!  Mike is looking tough rockin
out the sling in Hobby Lobby!
 Poor Dominic has a very good, but very relentless PT!
Notice his scowl... he was screaming at her!
And after his very first birthday party, wore out!
(the birthday party pictures will be posted soon)

So there you go, a year in pictures.  Looking through all these brings back so many memories.  It seems so long ago.  Here's to many more years with our little guy.  We want to thank all those who have supported us in the many ways we have been supported this past year: physically, spiritually, monetarily, babysitting-ly (he, he).  It is through you that we have been able to do what needed to be done, and not only survive, but thrive. 

In Them,
Dominic's mom