Wednesday, November 26, 2014

Happy Thanksgiving!

I know it's a day early, but tomorrow will be full of shoveling and digging out of a pre-Thanksgiving snowstorm time with family and I wanted to be sure to post in honor of Thanksgiving.

After all, we have so much to be thankful for!

Like this guy.  He has come a LOOOOONG way in a year.

And although he has grown before our eyes....he does somehow still fit in last year's Thanksgiving outfit and I just had to put him back in it (even if it does say "My 1st Thanksgiving".) while even grabbing those old rolled blankets and support pillows just for the fun of it.  If you are going to recreate an event, you might as well go all in.

Some things have changed.  No more rolled sleeves! And an added post it that says "2nd".  Ha.

No more tape.  No more feeding tube.  (This guy will be tasting turkey for the first time!)  That other tube that goes into his nose and that wire on his foot?  He only wears them at night now.  Holy progress!

He has just been so cuddly...this week and we're so grateful.  For every day.  Every smile.  Every milestone.

Happy Thanksgiving readers, followers, friends, and family.  I hope you enjoy copious amounts of food and are surrounded by those you love.  We'll catch you in a week.  We are going to be spending Thanksgiving with family (weather permitting), decorating for Christmas, and making memories.  (I am sure I'll be posting to Isaiah's Facebook page.)


Monday, November 24, 2014

Roller Coaster Weekend

This weekend started out pretty scary.  One minute, Isaiah was happily eating pieces of a peanut butter sandwich and the next minute he sneezed a big sneeze that took him (us) by surprise.  He normally braces himself, and if he doesn't and I can tell a sneeze is coming on, I try to by holding his torso...but this one came fast a furious. much crying. It was that cry.  He was inconsolable for well over an hour.  He was only happy on my chest, rolled into a position he doesn't normally lay in.

All of his limbs were moving freely so we determined that if there was a break, it was somewhere in his torso- maybe a rib or compression fracture in his spine?  I emailed his doctor to give the news. Once Isaiah was calmer, about two and half hours after the sneeze, I gave him a bath.  We debated it, but he had water therapy earlier so we had to wash the chlorine off.  Plus I made it extra warm (probably on the verge of too hot for a kiddo this age) to help relax him.  He spent 45 minutes in that water.  He really calmed down and started playing and acting like himself.  He started dancing all around and stretching to touch the toys on the sides of the tub.  We were dumbfounded.  

Did the sneeze just scare him?  As a precaution, we gave him a dose of his pain meds.

He continued the happy trend and went to bed peacefully.  He slept deep and slept hard.  He slept through the night and didn't need any meds.

When he woke in the morning, we noticed a slight whimper sound that he was making in certain positions, so we gave him infant advil and that stopped!  We kept up with that throughout the day and he made it through the night again.

Then he woke like himself on Sunday morning.  No whimpers to be found.  In fact, he was full of energy.  He was happily playing and rolling around.  After breakfast (in his highchair), I was cuddling him on the couch.  he was wiggling like crazy! I was just slouched back on the couch with him laying on me.  And then?

He lifted his head.

He lifted his torso.

HE SAT UP! What the what???????????

Oh hey, check my awesome Minnie Mouse pj pants. They are trying to steal the show here. I think they almost succeeded.

I had my arms around him for support, but he did every bit of the work.  No signs of a rib fracture or compression fracture here! 

At 15 months old, Isaiah David Martin sat up on his own.  It only lasted about 3 seconds before he threw himself back, but then he did it again!  (Another awesome milestone happened as well...he put his head up during tummy time!!!!! This kid....)

Do you see that face?  That's the face of one amazing, determined, and PROUD little boy.

Super baby strikes again!

Friday, November 21, 2014

Big OI Awareness

If you haven't yet watched last night's Grey's Anatomy and plan to...skip this post until after you've seen it, ok? (aka spoiler alert!)

Did I ever tell you that when I was 15 weeks pregnant with Isaiah, I experienced some spotting?  (TMI? sorry.)  Dave and I went in to for me to get checked out and everything "looked great".  The ultrasound tech focused on measuring the amount of amniotic fluid and the condition/location of the placenta...they took a brief look at "the fetus" mainly focusing on the organs.

I remember thinking "where is his arm?" as you couldn't see one of them...but the tech assured me "it was fine".  The baby "looked great" and it was likely due to positioning but it worried me.  (Now thanking back, I wonder if he was self-splinting.)

The tech also noted Isaiah was breech (the term "breech" is in regards to a baby's position in utero- it meant his head was "close to my heart", as I lovingly coined it, and feet were to the floor- opposite of the position he should have been hanging out in).  Isaiah was always breech.

But I ate up that "the baby looks great".  It reassured me.  Seeing the wiggly little monster up on the screen, hearing the heartbeat?  We were so very in love.  So eager for our "healthy" baby.

I used to be a big Grey's Anatomy fan...back in the beginning with George, Christina, Alex, Izzy.....but then it's character lineup changed so much and I couldn't keep up so I just moved on (you were wondering, right? Clearly. ha) ...but yesterday, I was recommended to watch it (actually, Greys talk completely blew up my Facebook newsfeed), and there were about 15 min here and there throughout the show that had me flashing back and holding my breath.  

See this couple?  They are doctors on the show.  And they are about to (fictionally, obviously) go through what Dave and I, and many parents that I now connect with have been through.

The doctors on the show have diagnosed the baby as OI type II (maybe type III).  The baby's skull is undermineralized, in a breech position, and legs are "budda-like."

When the girl who did the ultrasound first showed the blond doctor, Arizona, and I heard her mumble "type 2, maybe type 3", I held my breath.

Is this what it was like after all of our ultrasounds?  Did the doctors sit and discuss together, trying to figure it out?  Did they go to a know-it-all doctor in the hallway who matter of factly stated that Isaiah would die at or soon after birth?

At 24 weeks, when we went to the first children's hospital, and we had an entire day of ultrasounds and tests run....and we were so exhausted.  They brought us into a closet-sized room, with two round tables pushed together, surrounded by chairs, with a box of tissues in front of the chairs they wanted us to sit in....and they handed us a folder with this...


They verbally said that it could maybe possibly be type III, but if so, it would be very extremely severe.

They hugged us.  

We cried.  

They told us we had a decision to make; we had to decide who the important patient was- Isaiah or myself.  Based on that, we'd decide what type of birth to go with (but a c-section is major abdominal surgery.  "Are you sure you'd want to go through that and never get any time with your baby while he is alive?").

Isaiah kicked and hiccuped.  

Thank God we found OI Parents and AI DuPont.

I'm sucked in for the rest of the season.  I hope the writers of Grey's Anatomy have a positive OI storyline.  A popular show on a major network has the potential to show that OI is not always a show stopper.  Thanks to today's medical advances and therapies....those with OI are doing better than ever before.  Will they show that? Or will they have that doctor's diagnosis correct and make way too many viewers' hearts break and make them think that severe OI is a death sentence.

 OI is not always as grim as doctors first diagnose when they see it in utero.

Isaiah is proof.

And hey, Shonda Rhimes....if you are looking to cast an adorable boy with severe OI...I know a really cute guy ;-)

Wednesday, November 19, 2014

Mommy is Breaking the Rules

Scrooge Dave has this rule: No Christmas decorations/fun until after Thanksgiving.  

But then it snowed.

And then he broke the rule by playing this video for Isaiah.

If daddy broke the rules, that means mommy can too, right? (we rule breakers are really good role models, aren't we?)

So, today, I grabbed a few Christmas boxes, and introduced Isaiah to a Christmas toy from when I was a baby while I Christmas-fied the family room. ;)

Isaiah jingled Santa while I hung his stocking that was mostly handcrafted by me (everything except the stocking itself was cut and sewn on by yours truly). It took me about a week to transform this cheapy felt stocking into a personalized keepsake for our Isaiah thanks to a project I found on pinterest.

Yes, I do need to make matching stockings that say "Mom", "Dad", and obviously a "Carl" stocking too. (And no, you aren't supposed to notice that I probably technically broke the no-Christmas-yet rule first by creating this stocking. Shhhhhhhhh)

I really tried to stifle my early Christmas cheer.  I swear I did.  I spent time putting together some of the outdoor decor in preparation to put it out on Black was supposed to hold me over...

but my plan backfired because it just got me more excited to start celebrating with Isaiah!  This Christmas is going to be so different than last year.

 Last year we had ourselves on lockdown.  Isaiah was on his c-pap and oxygen 24/7.  He was spending much of his time on a mattress.  He was eating through an NG-tube.  He had night nurses.

This year?  It's going to be so different.  He's grown so much!  He's eating table foods. (Hello Christmas cookies!) He's only using his c-pap machine at night.  He's sleeping in his room (instead of the dining room with his nurse nearby).

Our little snowflake has come such a long way...

and I am eager to celebrate a very exciting holiday season with my family. :)

Monday, November 17, 2014

Baby on the Move?

Oh, this kid.  

Just when I start to get frustrated in Isaiah's lack of interest in getting moving...he gets inspired by a stack of cups.

and it's beginning.  Isaiah is wanting to move, really move.  And it. is. amazing.  Currently, he's rolling in order to move closer to his toys.

But he's starting to get all the way onto his belly and looks like he's starting to bear weight on his legs (not pictured...Isaiah refuses to show off with the camera lately)....he's getting focused, he's getting determined.  Dave and I are getting beyond excited and maybe a little scared.   Maybe we have a crawler/scooter in our near future?

Isaiah still has a long way to go in terms of getting moving, but this weekend, he took a huge step forward; he showed interest, for the first time in his life, he showed interest in moving.  Let's hope it keeps up all week so he can show his PT.  

Will we be getting a baby-on-the-move for Christmas this year?  


We just might! 

Friday, November 14, 2014

It happened.

That moment that I have pictured in my mind happening again and again finally happened.

Isaiah and I went to the mall together on Wednesday, and after an hour window shopping, we took a seat so I could give him a snack.  I had his stroller facing me and my back to the people walking by (Isaiah loves people watching).

An older woman popped up behind me and asked

What is wrong with him?

No "hello".  No "awww what a cutie".  

And I was dumbfounded.  I've had many people approach us...goodness, just last week I posted about how I respond!  But man...she just blurted it out!

My jaw dropped.  In my experience, when I ask "what's wrong with him/her", the person I am referring to is crying...maybe angry....But Isaiah was neither of those things.  He was happily eating cheese balls, smiling and clapping. 

I stared at the woman for an uncomfortable amount of time trying to figure out what to say while trying to keep my blood pressure from sky rocketing.  

Inside of my head I was screaming "NOTHING IS WRONG WITH HIM [insert expletive]!!! WHAT IS WRONG WITH YOU????????"

.  Wrong. Wrong. Wrong. Wrong.  

I took a deep breath, tried to smile and look confused, "Wrong?" I looked back and forth between her and Isaiah.  "Well, he does have a condition called Osteogenesis Imperfecta; he has fragile bones...but nothing is wrong with him per say."

She definitely got the message that I was offended and upset by her question and was already running away before I finished my sentence.

Awareness fail.

Sometimes I forget that not everyone knows him.  Not everyone knows what OI is.  

When I got home I went to my support group and asked what they do in situations like this.  I got over 50 responses.  The members of the group helped to educate me, remind me how we are not alone in this, and for the most part lift my spirits.  I also posted to my personal facebook, and friends and family gave more ideas and so much love. <3

I have a plan.  I am going to make some new business card sized cards with info on OI to hand to the next person who is so bold with their curiosity.  I have ideas floating in my'll include the link to the OI foundation's website, a brief description of Isaiah's OI, and may include a brief something about the word "wrong".

Can you do me a favor?  

If you are out and about and you see a child with special needs, and maybe you get to chatting with the child's caretaker...if you are dying to know "what's wrong?", consider using different words.  Maybe something like "What's his/her diagnosis?"  It's just gentler.  When I hear the word "wrong" to describe my child, who is not sad or angry, you're basically saying something is not right, and that just kills me.  Remember, that caretaker knows and loves that child.  They love that child so much and they are able to see past the disability, they see that child.  

See past the disability.

See that child like I know you see Isaiah, ok?

And a final is a video of a mom who experienced something similar and her advice...

Just, seriously, avoid the word "wrong". ;-)

Wednesday, November 12, 2014

15 Months!

Isaiah turned 15 months old yesterday!

His vocabulary continues to develop.  "Carl" and "oh yeah" have been added, along with singing something close to "Mahna Mahna"...

Ever since Pam, Isaiah has been a clapping machine.  It's kind of adorable.

I am starting to lose count of teeth, but I think the last count showed 8, with a 9th (front incisor) just about to come through.  

He's tipping the scales at 15 pounds and has a love for Toll House Club crackers and watermelon.  He's still happily sporting 3-6 months clothes (and let's be honest, he'll probably be sporting it for at least a year...we know we get more than our money's worth. #positiveofOI!)

We no longer have to hover over Isaiah when he is sitting on his couch...and he continues to surprise us with how he pulls forward while playing.

Happy 15 months Isaiah! We can't wait to see what this month will bring. :)

Monday, November 10, 2014

Weekend Fun

Anyone else have a weekend packed full of fun, friends, family, and traveling?  

We started out bright and early on Saturday, Mickey noses in hand!

First stop- the Elmwood Park Zoo in Norristown, PA for a fun meet up with other local OI families.

It was pretty chilly so we slacked on the picture-taking....we didn't even get a group shot!

We did get goats though. ;-)

And of course, pics of Gavin and Isaiah chillin' together. :)

We couldn't stay too long, but we were sure to snap a picture of Isaiah next to the first of what I am sure will be one of many Christmas trees this season. :) #mamalovesChristmas

After the zoo, we made our way to meet Isaiah's newest friend, Hazel Mae, the daughter of one of my BFFs.

Isn't she the cutest little girl EVER???

Dave and I both loved cuddling with her while she napped and can't wait to see her and her parents again!

After that, we headed to spend the night at Isaiah's aunt and uncle's house (Isaiah's first sleepover!)...that way we could spend some family time before his aunt and I went to a baby shower on Sunday to celebrate Isaiah's Aunt Nicole and his future cousin!

Isaiah is a bit of an early riser so we hung out in the living room playing, watching Disney Channel, and watching the deer in the backyard...

Yes, this is their backyard. #jealous

Isaiah had a ton of fun hanging out with his daddy and uncles while his Aunt and I partied it up.

and we had fun playing in a fort with him when we were hanging out.

Honestly, it was an amazing weekend....we don't have many like it, so jam-packed with stuff to do, full of OI friends, new babies, old friends, and family...we're kind of exhausted today (Mostly because I'm a lazy-body, ha), but it is so well worth it.  

We need to do it all again SOON! 


Friday, November 7, 2014

Happy Friday

Woah, it's Friday already? This week has flown by!

We're vegging today...

Preparing ourselves for an extremely packed and hopefully exciting weekend full of fun with some of our local OI friends, some new-to-the-world friends (Hazel, this nonsensical phrase means YOU!), and family.  Here's hoping Isaiah can handle all the fun in store for him! 

We'll catch you Monday. <3

Wednesday, November 5, 2014

Ever Wonder What Your Toes Taste Like?

For months, Isaiah has stared at his toes, salivating.  He really been wanting to taste those puppies.

But he wondered, how?!!?  

So for months, I've been promoting him to kick, pull, and stretch those legs....and it's paid off!

That face is the definition of determination.

That face says "holy cow, I did it!"

He did it, you guys, and I am one proud mama!  It took 14.5 months, but he tasted those toes completely on his own.  This is one of those silly milestones that make my heart sing; it shows he is getting stronger and more flexible.  It also shows his determination....and that determination will be so important throughout his life.

Go baby go!