TOES TOES TOES

Have I mentioned on here that Isaiah loves to watch Mickey Mouse Clubhouse?  He giggles and kicks around as soon as the theme song begins.  I was trying to record this reaction, but instead...

TOES! ISAIAH CAN TOUCH HIS TOES!  This was truly the first moment that he got his hands on his toes and I got it on my iphone to watch forever and ever. :)  

And ever since then, he's all about those toes.

He really mostly grabs his right foot, but he's gotten a hold of his left every so often.

We're so amazed by this foot action because, well, it usually takes OIers months and months to do it.  And here he is, 7 months old, and amazing us all!

I believe this means that Isaiah can officially sing "Head, shoulders, knees, and toes", right?

Side note: Did you see the bath pictures? This kid LOVED his most recent bath.  And NO problems with his oxygen dipping either! Real baths will now start to replace sponge baths for Isaiah.  Also, did you notice he is still tube/tape free?  He's made it over a week without his machines.  They're just collecting dust right now; we have to make an appointment for a sleep study and then we're confident we can say good bye to the machines.  Woo hoo!!!!!

<3

Tummy Time

We've finally figured out a way to get Isaiah on his tummy while off of Dave and I...but before we did that, we spent a few days pushing Isaiah onto his side.

Carl is not impressed.

I use a blanket to to move him around.  Every day, I spend some time lifting his hips back and forth while crazily yelling "hip, hip, hip, hip" and Isaiah cracks up belly laughing.

Amazingly, we've gotten to a point where he can hold himself on his side.  

Isaiah's PT has suggested letting Isaiah hang out on his reflux incline.  He spent the first few times just laying on it, but has all of a sudden starting rolling himself over; it really helps him move.  He gets nervous when he's going, but each day he gets less nervous and more excited.

(Who noticed Carl stalking back there, anyone?)

This showed us that Isaiah was ready for tummy time!  Using his Hugga-Bebe pillow, we flip him over on his belly (literally like a pancake. lol).

This was his very first time on his belly. It lasted a whole 5 minutes, but he was relaxed the whole time.

I discussed things with the PT, and she wanted to open the Hugga-Bebe to give Isaiah as much opportunity to lift his head as possible; she was thinking that maybe it would restrict him from lifting.

Then, we started bribing him with toys galore.

And, BOOM, he started lifting.

(That's his PT in the background, thinking he's about to flip over, lol)

Such a strong baby!

Those eyes kill me.  Look at that shoulder off of his pillow.

Now that we know that distracting toys are key to get him moving, I set up quite the toy shop every time Isaiah does tummy time.  

He's gone from tolerating 5 minutes to 15 minutes, 20 minutes, and now 30 minutes.

And I have to say, he's quite happy while hanging out on his belly.

We're hoping Isaiah will really start lifting himself soon.  This is big progress for our little Super Baby.

Although, Carl isn't impressed with this progress.  He's looking more like "um, I'm doing tummy time right now too, mom.  Where's my accolades?"   ;-)

<3

The Weaning Continues

Isaiah has been completely off of his C-Pap since Thursday morning.

He's doing SO good!  We knew he'd do well the first night, but weren't sure how the next few nights would go.

Well, Isaiah's rocking night time.  He's dipped down once a night, and that dip lasts no longer than 30 seconds and is only 92%! He brings his oxygen saturation level right back up to 98% all by himself (without waking up).  The nurses believe this occurred while he was in a deep sleep (aka totally normal!)

Go baby go!

In other news, I still owe you a tummy time post.  It's coming, and is full of a ridiculous amount of pictures.  For now, I leave you with this...

 BOOM.  Isaiah is on his side!

Happy Monday!

<3

Full-Day Weaning

We're all feeling a new-found freedom in this house.  Having Isaiah off of the C-PAP and without the tube hanging off of his head has been amazing.  I'm pretty sure he feels the same way...

Oh the joy in this kid's face!

Isaiah's doing amazingly well.  His oxygen saturation level and heart rate have been just perfect.  His respiratory rate hasn't increased one bit.    

I still weigh Isaiah at home.  Instead of once every other day, I weigh him every Monday and Thursday.  Isaiah had some belly issues over the weekend and the scale showed that with the loss of a few ounces.  I was a little concerned that maybe it happened because he's working harder to breathe now...but once he was over the belly issues, he gained back a few ounces by the time I weighed him again on this week.  

That trend of "gain a small amount, gain a small amount, gain a large amount, lose a small amount" tends to be his normal...but I couldn't help overanalyze it this week and worry it's because of the wean. We're so glad he gained a few of the ounces back.

I'm fine, mom, chill out!

He LOVES being tube free.  He moves his head, actually his whole body, so much more when it's off of him.

To make things easier on his skin, we leave the the tape, called Duoderm, on his cheeks.  It protects his skin when we remove the cannula everyday; that gets held on with a clear tape called Tegaderm.  We do remove the Duoderm every 3 days or so to change it out.  Every so often, we've left it off all day to give his skin a nice break.  We kiss his cheeks ALOT those days.  :)

I love that we're not limited on where we can take Isaiah in the house.  He can hang out all the way across the room from his machine.  I've even been bringing him downstairs to my crafty room and the family room.  I'm always sure to have his travel machine near by, but it's nice that it's just a lump in the room, instead of attached to Isaiah.

Isaiah has also been off of his C-PAP while napping during the day.  His oxygen stays steady at 98-100%.  It gives us great confidence that he'll be ok overnight without it as well.

Here he is napping while the C-PAP is OFF.  The top red number is his oxygen saturation level and the bottom green number is his heart rate.  They are beautiful numbers.

Tonight begins the 24 hours/7 days a week wean.  Fingers crossed that Isaiah handles it just as he's been.  Once he's machine-free for a week, we'll be scheduling a sleep study at DuPont.  Once it's confirmed that he's doing well, we'll be able to close this chapter of Isaiah's book.  

We're so ready; ready to say goodbye to the machines....ready to say hello to our fabulous future.

<3

Adventures of Mommy and Isaiah

It finally happened.  It took 7 months, but Isaiah and I finally left the house by ourselves.  No Daddy.  No nurse.  And we left for something other than a doctor's appointment, something FUN!

SCHOOL!

Um, mom? School? Fun? Really?

YES, kiddo, it'll be fun, I swear!  We went to my old place of work, a place full of friends, love, and support.  I was dying to introduce Isaiah to everyone!  We had to stay away previously due to the fragility of Isaiah's respiratory situation, but he's grown so strong! It was time to introduce him to so many people who love him!

First, I made a sign to hang on Isaiah's car seat. (I actually updated it with a medical alert sign and fixed that spelling error, but here's the original screen shot I took yesterday.)

 I have more than one copy to put other places around Isaiah, but for now I just put the one.  

I made it in case I/we were to get in a car accident with Isaiah in the car and we aren't conscious.  It's a totally crazy way to think, but I have the mentality that if I'm prepared for it, it won't happen.  I avoided putting Isaiah's name on the card, and it does have his aunt's cell phone number on it (with her permission) for an officer or EMT to call if needed, but no names.  This way there's an immediate contact if necessary.  (I also have a list of important phone numbers in his diaper bag in case of emergency.)

Ok, so once I was prepared for anything, we got on the road...after a photo session of course. :)

Isaiah handled the car ride really well.  He did start crying after we passed the outlets (I know buddy, I want to go shopping too), so we pulled over at a gas station so I could give him his pacifier.  That soothed him until he got to school. (This was our first drive without someone in the backseat with Isaiah.  The fact that he only cried once is awesome.)

Once we got to school, we were met by many friendly faces.  Isaiah was so funny, he just kept staring at everyone.

Here he is with his visitor badge.  We had to be official and follow the rules!

We wandered the halls looking for friendly faces and he even got to meet all of the 5th graders in the cafeteria!  We circled each table saying hi as we went.  The kids were great at not touching him.  A few made him laugh/smile as we walked by.  I could tell he was so amazed at all the people he was seeing, and he just loved it, he didn't shed one tear in that cafeteria.

We told the kids about his OI, talked about the word "fragile", and of course told them about Wishbone Day!

Before we left the building, we just had to snap a picture with Character Ed and the PROUD board.  Isaiah may have received a proud point while visiting.  It's in my car. (Maybe I should have added it to the board! lol)

It was WONDERFUL seeing so many faces that I miss so so much!  Everyone there has been so amazingly supportive. I'm bummed a missed a number of people (what, do you think you're there to teach or something?), but it gives us a reason to visit again soon. :)

Isaiah passed out in the car on the drive home and then continued to sleep another hour in his crib.  Visiting friends is exhausting, huh?  A good kind of exhausting. ;-)

Hooray to our first of many adventures together.  It's funny, before Isaiah I likely would have taken something like this for granted.  We got to go out!  Isaiah got to meet people!  We got to rock out to music in the car together! (Picture me dancing/singing like an idiot and Isaiah looking at me in the mirror with a face that said "Um, really mom? Stop embarrassing me." NEVER!)  Here's to many more fun trips together....

PS- Who noticed he is tube-free in these pictures? Woo! Updates on the wean to come!

<3

First Hair Cut

On Saturday, I posted this picture and received a few comments, a number of private messages and even texts to my phone begging "NO, NOT THE CURL!"

Don't panic, it's still there.  Promise. 

I'm pretty sure I'll be crying when it's time to say goodbye to his top curl/mohawk.  Isaiah has always had longer hair on top of his head and along the back hairline at his neck.  Lately, it's driven me crazy! 

It's hard to see because his hair is so fine, but the hair along his neck was seriously an inch and a half to two and a half inches long.

On top of that, his long curls were always all over his ears.  That didn't matter before the surgery (where he got his ears cleaned out/tubes put in), but for 2 weeks after the surgery, his ears were constantly leaking wax (blech. Hope you weren't eating!) and wax was getting all up in his hair.  It was a gross, sticky mess.

See his crazy hair by his ear?

So, Dave held Isaiah while I used little kid scissors to get rid of those crazy locks.  We dreamed of Isaiah's first hair cut happening in the barbershop on Main Street in the the Magic Kingdom (of Disney World), but Isaiah had enough of a mullet and I could not live with it any longer.

Here you can see that the curl is still on top of Isaiah's head but his hair is trimmed around his ear.

Yesterday, Isaiah had some time on his side so I grabbed the opportunity to get a shot of the back of his head.

It looks like I did an awful job but whatever, it's no longer crazy long!

Distraction: Look at our baby holding himself on his side! 

So there it is, Isaiah survived his first hair cut, which is a huge deal given I was the one holding the scissors.  ;-)  This week look for updates on weaning (FULL DAY!), our adventures out and about [sans daddy], and holy guacamole, TUMMY TIME.

Back to Our Normal

Happily, there's not too much going on recently, and honestly I'm grateful for it.

The past month flew by due to Isaiah's surgery and Pam days.  He needs this time to sleep, veg, and just be a baby!

Does that picture not melt your heart?  When I snapped this picture I had a vision of 5 years from now, Isaiah in bed surrounded by every stuffed animal in our house, happy as a clam.  

Isaiah is learning how to make different sounds.  He had previously only made vowel sounds, but we're getting a few b's and um, pfffffts?

(let's see if I can embed the video I uploaded to instagram yesterday...)

(Holy macaroni, I did it!)

This kid is going to be talking before we know it.  I vote that "mama" should be his first word, but I'm biased. I'd also be ok with supercalifragilisticexpialidocious or bazinga.

Happy Friday, everyone! Isaiah and I might just get brave enough to run an errand or two by ourselves today... before we get even more snow in a few days (barf.).  I'll be sure to take 862 million pictures of our adventure (who's surprised?).

<3

Do You Have Your Yellow Yet?

We're counting down to Wishbone Day in this house!  Only 8 weeks to go!

A year ago at this time we had no idea what Osteogenesis Imperfecta was or that Wishbone Day was the International Day of Awareness for it.  Thanks to Isaiah, along with some wonderful OI families and the oh so helpful oif.org, we learned about OI and Wishbone Day.  It was like a whirlwind at the time, we found out about Isaiah possibly having OI, shared the news with friends and family, and asked those on Facebook to wear yellow on May 6.

Our facebook friends and family answered our request and showed their support.

Wishbone Day celebrates those living with OI and raises awareness of this lifelong disease. It also shows the world that those living with it live BRIGHT (helloooo yellow) and wonderfully HAPPY lives.

#OICAN!

This year on May 6th, Isaiah's first Wishbone Day, we will be celebrating at the state Capitol of Pennsylvania!  Thanks to my friend Fallon, a resolution will be declared (if it gets adopted; the senators have to vote on it) to make Wishbone Day an official day in the state of Pennsylvania.

Not too shabby for Isaiah's first Wishbone Day, huh?

We'll again be asking our friends and family to wear yellow.  We're also writing a letter that we'll deliver to our neighbors in April telling them all about OI.

Besides what we're doing ourselves, I have a friend spreading awareness in her play group.  They're having a yellow party!  (Party?! I like the way they think.)  I look forward to seeing pictures of all of those little cuties spreading awareness in their yellow.

I'm looking forward to seeing your pictures too! When Wishbone Day gets closer, I'll be requesting pictures of YOU sporting your yellow in support of Isaiah and all those living with OI.  I'll be challenging you to tell at least one person why you're wearing yellow on May 6th.

If you've been inspired do something extra for Wishbone Day, please share it with us! We'd love to know what you're up to in order to spread awareness.  Comment below or email us at oibelieveinisaiah@gmail.com. (That's right, Isaiah already has his own email address.  He can even take his own selfies already, too...)

(Yes, he really did take this picture. And it cracks me up every time I see it.)

On the weaning front, we're trucking along.  Today starts 2 hour weans and then Isaiah will be tube-free during waking hours all weekend (and beyond? yes please!).  He's sustained oxygen levels of 97% and higher during his weans, his heart rate stays completely normal, and so does his respiratory rate (we have to count that one ourselves).  Super Isaiah!

We'll continue to keep you updated on Isaiah losing the tubes and tapes. (Go baby go!)

PS- It must have been the shot bugging his leg yesterday, that or a pooping problem (you're welcome), because he's been dancing all morning! :)

<3