Friday, May 30, 2014

Tired of all the Helmet Talk Yet?

Ok, then instead of focusing on the helmet, check out Isaiah's awesome chair!

My baby is sitting in his Boppy chair!  It's similar to a Bumbo but safer for Isaiah (padded, leg opening is much wider).  I love the tray it comes with and the fact that it's travel friendly (it folds up nice and small and can be a booster seat in the future).  

Isaiah doesn't have complete head/torso control so he has to have some padding around him for now, but he's getting there and it's wonderful to see him sitting all the way UP!

The head tilt that you may have noticed is a part of his torticollis.  His head leans left and tilts right.  We're hoping as he gains strength that he can correct this as the strength exercises normally done wouldn't be so safe for him.  We modify what we can, but it's very much up to him.

The torticollis is the reason he has the helmet....he loved to keep his head one way and it was hard for us to change the position too much when he had the c-pap attached to him 24/ here we are with the helmet.

I'm glad we went with the plain blue gave us a blank surface to work with....after 2 weeks of staring at it, we came up with an idea.  It kind of looks like a fishbowl, doesn't it?  And those that know us, know we are big Disney lovers.  So tonight, before bath time, we pulled out some stickers and...

Isaiah found Nemo!

The stickers won't stay forever.  I had read about modge podging stickers on or painting the helmet with acrylic paint, but this was just the first attempt.  I'm sure Isaiah will have many looks with his helmet as time goes on...

Isn't it cute? Don't ya love how I got the curl to stick out today? ha.

We're big fans.  Isaiah wasn't a fan of the process...but smiled when he saw the end result in the mirror.  Although he may have been smiling because we were making fishy faces at him....(and no, there's no picture proof of that, thank you very much).

After Disney-fying the helmet, Dave and Isaiah had some daddy/son time.  They read one of Isaiah's favorite books....

And made some music...

Until Isaiah passed out asleep.  Sometimes this kid is just too darn cute...Happy Friday! <3

Thursday, May 29, 2014

Another Helmet Update

Isaiah and I traveled to DuPont together again this week.  Before that, we tried to keep Isaiah used to the helmet idea. ;-)

This is pretty much how it went when I walked in to Lawalls with Isaiah and the helmet in my bag instead of on Isaiah's head....basically, the guy's face looked like this:

Nice impersonation, Isaiah.

I explained to him what happened over the weekend and how scary it was.  Funny thing is, when I put Isaiah in the car seat with the helmet, for some reason his chin didn't go down to his chest.  I even picked him up twice and repositioned him, just trying to problem solve what the heck happened over the weekend.

Isn't that the way it always is?  Oh well, it was a blessing in disguise.  I thought to myself "oh boy, I can totally drive with him wearing his helmet!"  Once on our way out of DuPont (helmet on Isaiah), we started toward our first visit to Nan Nan, Pop Pop and Aunt Tricia's house (they don't live too far from DuPont, so it only made sense to visit).  Well, it's a good thing I have a mirror in the car so that I can see Isaiah because I turned a corner, looked back at him, and his head had fallen forward.  To make it worse, he didn't have enough neck strength at the time to lift his head back up! I pulled over and pulled his head back then found my way to a parking lot where I popped the helmet off again.

Basically I'm back to square one when it comes to the car seat.  I told our OT about the pickle that we're in and she suggested putting a roll all the way around his neck, we're trying that.  We're also considering trying to put something in front of his helmet, across the top of the car seat, to make it so his head doesn't fall forward.  We have PT today, so we'll see what she says.

Anyways, we made our way to a quick visit with family (they had an appointment to get to so we couldn't stay long).

How many people hang welcome signs for their grandchild/nephew? Isaiah, you're spoiled.

He finally met his Uncle Simba, 
who ran away right after this picture was taken because Isaiah screamed in excitement. 

We had a great visit.  I kind of loved how they were so enamored with him.  He was babbling up a storm and loving playing on the floor in front of them.  And when he rolled over? They all almost had heart attacks, which made me laugh. :-P

Yesterday we had a whole day at home, so Isaiah spent the entire day (naps included) wearing his helmet!

We're skipping nights for a few days...since we're starting the schedule over...and well, mostly because we don't want to face the whole "how do we make this work with the cannula" debacle yet (let's just be happy he can breathe with it on, huh?).   We're happy that Isaiah is tolerating the helmet during the day.  He's getting fussy quicker but he's still spending the majority of the time smiling and playing.

We have another appointment next week.  I'm emailing his pulmonologist to help us problem solve the cannula problem.  We're hoping he can help us and that we can keep Isaiah in his helmet 23 hours a day asap.

And yes, I totally still have to decorate it.  I bought some stickers to pop on there.  We'll see if I can get to sticking them on today...

Monday, May 26, 2014

Helmet Update

Isaiah has done a great job with his helmet while playing in the house...but when it comes to traveling in it, it makes us a bit nervous.

Do you see how his head is forward? His chin is on his chest?  It makes us nervous given his history of respiratory problems.  We're afraid if he sits in this position that his oxygen will dip; this is a scary reality, especially considering we are taking (long) trips on our own.  We also don't want Isaiah to be uncomfortable, and who would be comfy in that position? 

So we're going to start over after this week's appointment.  I am basically going to plant myself in Lawall's Orthodics and refuse to leave unless they help me figure out how to:
1) have him sit safely and comfortably in his car seat.
2) allow Isaiah to lay down wearing both his c-pap and his helmet.

Ok, so I'm not going to "refuse to leave" but I'm going to be firm.  or I'm going to beg for help.  

For now, we are being a little loose with the helmet schedule.  We shouldn't be, but we are.  I'm just too scared right now.  I'm so scared that Isaiah is going to have trouble breathing.  A round head is not worth causing breathing problems.

So after a lot of stress, we let it go (for now).  We relaxed.  We had fun.

We blew bubbles again...


We found new ways to enjoy the pacifier...

We took many walks, enjoying this beautiful weather...or passing out from the comfy ride.

We'll let you know how the Lawalls Orthodics people help us this week and hopefully he'll be back in his helmet asap.

Happy Memorial Day! :)

Friday, May 23, 2014

Random Friday Update

Oh hey, check out this guy getting ready for a daytime nap! Do you notice anything missing from Isaiah's crib? (Pssst, I'm not talking about the C-PAP; he only wears that at night.)

Isaiah is sleeping free of his mattress pad! He has been all week and just LOVES it!  It makes the 3am parties so much more fun for him because he can wiggle his way around and around (and he does wiggle).

I still use the mattress pads post-bath since I dry him off on the table still, but I'm sure that'll switch to our bed soon as my next personal goal is to get him taking baths in the bathtub (no more bathing on the table, please).

Oh hey, and check out this other first- SHORTS! Although pants are totally overrated, he does look pretty snazzy in them.

Isaiah has been slowly progressing with the helmet.  He's much more tolerant of it in the morning as compared to later in the day.  He's still free of it during naps and nighttime but by Saturday he should be staying in it for naps.  Hopefully he doesn't mind too much.

Lastly, I just have to share....I've been very concerned about Isaiah being frog-legged, and although he does often lay with his feet on their sides, lately they've been turned to a more natural position!  This is HUGE in my book.  He's doing this on his own....aka not because rolled up blankets are forcing them into this position (like I have in all of his chairs).

Go baby go! Oh hey, and maybe in the future I'll button the bottom of his clothes so he's not basically hanging out with the equivalent of his fly down.

Happy Friday! I hope your fly is up! :-P

Wednesday, May 21, 2014

Helmet Time

Isaiah and I survived our first Mommy-and-son trip to DuPont.  We had a quick appointment with his ENT...Isaiah had some blood come out of his ear after water therapy on Friday.

All is good.  He has a cut inside of his ear that's healing...a few more days of drops, avoiding getting it wet this week, and he's good to go.

After seeing the ENT, it was time to get Isaiah's helmet.  Isaiah is getting a helmet to reshape his head.  The back of his head is flat from his being on his back thanks to the c-pap tube for his first 7 months of his life. He has a bulge on the right side of his head, likely enlarged due to his brain having to go somewhere!  Also, it's common for severe OIers to have a triangular shaped head.  We're trying to give Isaiah the chance to have a round-shaped head and this is how to do it.

Here we are after the helmet was first put on.

We were hiding in the bathroom.  You see, after the fitting, we were recommended to go for a ten minute walk around the hospital...well as soon as we walked out of Lawalls Orthodics and directly into the massive (and busy) waiting area for Day Med, Radiology, and the Cast Room, I felt all eyes come our way.  I heard a child coming out of the cast room yell "WHY DOES THAT TINY BABY HAVE A HELMET, MOM???"  (Thank you, mom, for coming up with an answer for your child instead of telling him not to look at us.)  I saw those pity-filled smiles.  I felt uncomfortable.  I wasn't ready for that.

So I did what any reasonable person would do.

I brought Isaiah into the bathroom and hid there.

I know this is an attention grabber...I know Isaiah is an attention grabber (I mean, helloooo, he's adorable.), but I just wan't ready for that in DuPont.  DuPont is my safe place.  There are so many kids that come from all over just for the doctors at DuPont, and so many of those kids are unique, although they don't have OI, they are just like Isaiah.  I feel like Isaiah fits in.

I just wasn't ready for those stares yet.  So we took selfies like kids in a high school bathroom mirror.  

Once I was done hiding, we went back in to Lawalls.

I was given directions on how to work Isaiah up to wearing the helmet.  We're to start out with it on an hour, off an hour for one day (while keeping it off for naps and nighttime), then 2 hours on, one hour off for a few days (again not wearing it during sleep), then 4 hours on, one hour off, including naps, then 8 hours on, one hour off, then 23 hours a day.  

At first Isaiah wasn't too sure about this helmet thing...

but he quickly learned he could go about his business with it on him.

The process of getting it on and off while just the two of us has been extremely challenging.  I need at least 1 more arm.  Isaiah doesn't have enough strength/control to sit up on his own so I have to balance him between my legs and try to get it on him without hurting's not an easy task.  Honestly, I'm not sure if I am going to follow the guidelines to get us started or just go gung ho (except for sleep) since that's the hardest part for us.

I have to watch for the pressure points on his cheeks, if redness develops and doesn't go away within 20 min on its own, I need to bring him in to get it adjusted.

Speaking of getting it adjusted, we have to go back weekly for that at first, then biweekly, then monthly.  They'll make adjustments, shave down areas, add padding in areas, etc...

But so far, so good...I think!  I'm not sure how long Isaiah will need to wear his helmet, but we expect it will be a while.  Each individual's path with a helmet is different.

I'm devising a plan to spice up the helmet.  Because if we're going to grab attention, I at least want it to be fun...

As always, we'll keep you updated on the progress.  :)

Monday, May 19, 2014


Isaiah and I spent a few hours outside yesterday, enjoying the amazing Spring weather that has come upon us (sunny, breezy, and temps in the 60s? That's the definition of "perfect weather" in my book.)
I think Isaiah liked it too.  Maybe.

We played a rousing game of peek a boo.
Where'd Isaiah go?

He took a brief nap...

We mimicked each other. 

We enjoyed the sounds and sights of nature.

And we even blew some bubbles (We came back out before bedtime).

Life is good.

Happy Monday, friends.

Friday, May 16, 2014

Water Therapy

Isaiah and I were lucky enough to have Dave join us on our most recent water therapy session.

And guess what? I sat in the front seat on the way there!

AHH! (Only took 9 months!)

He handled it well.  I kept looking back like a nut, but it was good.  He's often back there by himself on car rides with just the two of us, but I always sit in the back with him when Dave travels with us, this trip was a first.

We got there a little early, so we waited by the pool for the locker room to open.

We had a lot of fun.  Isaiah sure loves the water.

The session is only a half hour so we're working on giving him some water therapy at home. (We may have a soft tub sitting in a box in our garage right now. We'll be pulling it out and filling it up next week! Woo hoo!)

Our little ducky will be working on strengthening his neck to hold that head up during our next session.  He's been working on kicking those legs and working those muscles.  The stronger Isaiah's muscles are, the more they help protect his bones.  We're all about protecting those bones!

Happy Weekend, everyone!  Oh and one more thing...

BOOM! Look who's in his carrier!  He'll be facing out in no time!

Thursday, May 15, 2014

Brotherly Love

Carl's love for Isaiah is really obvious lately.  

It's either that or he really likes all the comfy stuff this cute kid comes with.

"You caught me, mom.  His stuff is super soft and fits around me perfectly!"

Either way, I've really been enjoying how their relationship is evolving.

When Carl is around, Isaiah will twist and turn, wiggle and wobble his way to see him, touch him, and hear him.  He belly laughs like you wouldn't believe when Carl meows.  Carl had been keeping a slight distance (unless Isaiah was asleep)...

Until Isaiah broke his leg.  It's like Carl knew.  He laid by Isaiah's side a lot.

Or hovered like a helicopter mom ( #helicoptercat ), standing guard near by.

Although I know Carl is a gentle guy, I'm always an arm's reach away when these two are close just in case.

"Where's my car seat, mom?" -Carl

(I seriously didn't realize how many pictures I had of these two knuckleheads until I went to write this blog post.  It was so difficult picking and choosing which shots to share with you!)

I know that these two are growing into the best of friends.

And I wouldn't have it any other way.

Tickle, tickle!