When Will It Get Easier?

Ugh.  I swear I ask myself this question multiple times a day.  Every Day.  I don't know why I do it, I know the answer.

It will but it won't.  There will always be challenges.  There's always challenges with any child, whether they have OI or not.

Sometimes I need to stop, take a breath, and realize.

Just 4 months ago Isaiah was on a constant c-pap.  He lived in the living room unless I wanted to roll every machine and cord down the hallway and into his room.  We didn't have an option of where to cuddle with Isaiah; the c-pap cord only went so far.  There were two seats to choose from, the chair by the window or the end of the couch.

When someone was cuddling with Isaiah and they wanted to give someone else some time with him, there was a whole shuffle.  Hand him off, don't get caught on his cords, stand up, move out of the way, next person take their place, have Isaiah handed to them , adjust the cords and tubes, relax.

Gosh, things have gotten easier.

Isaiah is only on his machines at night now.  We don't even bring them with us when we travel on an errand or a day trip anymore!

When we went for Pam last week, Dr. B gave me the go ahead to stop weighing Isaiah.  One less thing to worry about.  One less thing to do.  Relief flooded me.

Sometimes I take our freedom for granted.  Sometimes I almost forget that was our reality just a few short months ago.

Sometimes I forget about the car bed and all the transferring we used to do to get Isaiah into and out of the car.  Put him in the bassinet, get the travel C-PAP connected to him and on your shoulder, carry both the bassinet and the C-PAP out to the car, get the C-PAP in the car, get Isaiah into his car bed, breathe (you're late! That process took forever. DRIVE! -but not too fast, there's a fragile baby in the car!).

It's all a memory now. A closed chapter in our book.

Sometimes I'm bummed Isaiah is still on the C-PAP at night.  Sometimes I'm mad at myself that we still even have the mattresses in the house.  But then I think of how far we've come.  Isaiah can hang out in any room in the house without any preplanning or thought.  We want to hang out in the family room in the lower level? Pick him up and go!  Time for a nap? No need to roll that whole C-PAP contraption from the living room to his bedroom, just pick him up and take him.

We're lucky.  So lucky.

But then there's the OI aspect.  Will it ever get easier? Sort of, we'll learn how to splint, medicate, and cuddle.

At some point he will be talking.  He will be able to communicate.  Right now, his only means of communicating that something is wrong is by crying.  

This morning he was having a great time playing on the floor.  He was playing, rolling around, looking back to the hallway when he heard me yelling at Carl.

And then he sneezed.  

Now we're asking ourselves:

Did he break a rib?

Did he maybe hit his upper gums with that sharp tooth on the bottom?

Does his belly hurt?

Are we missing something? Is he moving all of his limbs? Was he moving them all before he sneezed?

2 hours of crying hysterically on and off.

It all started with a sneeze. A sneeze.

Like any parent of any baby, there's questions, unknowns.  But these questions and unknowns are so scary.  I know the pain of a broken bone; I've broken a few in my years.  I'd hate to think of the pain he is suffering if we're missing something.  I only gave him Tylenol, what if he does have a break and he's suffering still?  Tylenol won't do a thing for a broken bone.  What if? What if? What if?!?

Ugh.

This will get easier.

It has to.

One Less Switch

So remember when Isaiah needed a support pillow to hang out in his chairs?  

We tried the Hugga Bebe for a while...and Isaiah still couldn't reach the hanging toys in his one chair.  I ended up putting 3+ rings on each so he could grab at them.

 Then we moved on to the BenBat.  Still couldn't reach the toys when trying to play, but he at least had less rings.

The one support that worked was the Snuggin Go.  He could play.  With zero rings attached to the toys!  He could kick the bottom plate that made music.  It was fantastic.  But now he's thirteen and a half pounds. He's twenty one inches (well, I believe he's longer; it just depends on how much he stretches that day).  

He has officially put the SNUG in Snuggin Go. So this weekend, we pulled the support out.

He says "I can BREATHE! and move my head! FREEEEEEDOM!"

Oh hey, he can play too. ;-)

We're still using the Snuggin Go pillow in his rocker, car seat, and stroller, but it's still one less switch which makes life easier.

Our boy is getting so big! Happy Monday, all!  We're looking forward to making some 4th of July memories this week. We can't wait to celebrate the good ole U S of A. 

Water Therapy Update

We had a water therapy session today and although I thought Isaiah might be a grump monster, he basically jumped right in the pool instead!

He loved stretching out, splashing, reaching for the water flowing from the watering can, and grabbing his toes.

And although he looked skeptical, he enjoyed every minute in the water.

Isaiah also had a great night playing some tunes on the guitar.

Seriously, doesn't it look like he's plucking the strings?

He seemed to wake up with a tight neck, so he got to be helmet-free to help that get better.  He's also had a low-grade fever.  Although he's been acting normal (except for the neck after his afternoon nap), we think maybe it's related to his Pam treatment this week.  Or maybe his tooth (which I doubt because it's definitely cut through, and sharp!).  Or maybe one of a million other reasons. ;-) #babiesareconfusing

We thankfully have a lazy weekend ahead of us. Hopefully you have a fantastic one!  :)

Some people go to the beach for vacation...

We go to the hospital and the Ronald McDonald House.

and we're totally ok with that because we've had a blast!

After Isaiah's sleep study, we visited Isaiah's Nan Nan, Pop Pop, and Aunt Tricia on Sunday.  We really just called them up spontaneously and asked if they wanted a visit (since the study went so well and everyone got some unexpected rest).  We got back to the McDonald House in time for dinner and our buddy Silas' arrival!

Early Monday morning was the start of this Pam infusion.  "Pam" is short for Pamidronate.  It's the medicine that Isaiah gets through his port that helps his bones.  He always feels fantastic once Pam is over; it does wonderful things for him.

We spent some time vegging and watching the Disney Channel while waiting to get accessed and for Pam to get started.

Before we knew it, our first day of Pam was complete.

Isaiah was a bundle of energy so we decided to join our friends for a visit to a local handicap-friendly park, the Can-Do Playground!

We had a lot of fun swinging and rolling all around the wheelchair accessible jungle gyms.

Day 2 involved a lot of hanging out with our OI buddies.

Rollin' with Silas!

Getting big kid advice from Silas's big brother Isaiah.

After Pam was over, we headed back to the McDonald house for family nap time, packed a bit, and then met our OI friends for dinner.  After dinner, we all had a ton of fun in one of the play rooms at the McDonald House.

Isaiah LOVED playing with his buddy, Gavin.

Today is the final day of our Pam infusion.

We're so sad to leave our friends (especially Silas and his family since Silas has grown enough to extend his treatment. yay and boo) but happy to get back home to Carl.

Honestly, Pam infusions are so wonderful for our entire family, and a big part of that is because of the time we have with Gavin and Silas' families.  We feel normal for 3 fantastic days every 8 weeks.  We feel happy, especially since we're giving Isaiah the opportunity to spend time with others just like him.

We're so thankful for the support groups we are a part of that have helped us meet so many members of our OI family and we're just so grateful to make what could be a lonely 3 days feel like a party instead.

Sleep Study, Take 2

We arrives at the Ronald McDonald House (RMH) on Saturday afternoon to relax before Isaiah's sleepover with Dave over at AI DuPont.  I joined Isaiah for his first sleep study two months ago.  At that point he had been completely off of his c-pap for a month and we had thought he'd been doing well, but the results of that test showed he had obstructive sleep apnea and that we needed to put Isaiah back on his c-pap for his night time sleeps. (He could stay machine-free for naps as long as his oxygen saturation stayed at a safe level.)    

His doctor ordered this sleep study to make sure that the pressure that Isaiah's c-pap was giving is enough for him (Isaiah uses a pressure of 5, which is the lowest setting possible.  It could go up to 9.)  Lucky us, we know we have at least one more sleep study in the future to see if we can take Isaiah off of his c-pap.

Anyway, when we arrived at RMH, we got settled in.

Somebody literally fell into tummy time. That somebody has a monster on his butt.

After some tummy time, Isaiah sat UP in his Boppy chair.  He loved exercising his neck while playing with daddy.  Warning, the look on Isaiah's face will make your heart melt (ok, maybe it just makes my heart melt):

Yup, my heart is now goo.

We had a nice dinner that even included a dessert! Ice cream cones!  Isaiah had his first really big bite of ice cream.

Clearly, he loved it.

Shortly after dessert, it was time for the sleep study.  I had the time wrong.  We went over to the hospital at 7 when it fact we didn't need to be there until 7:30. Woops.  Bonus visit to the NICU! (aka happy accident)

Once 7:30 hit, we headed to the study area.  They quickly got us into Isaiah's room for the night and he promptly passed out while waiting for his crib to be delivered, which caused a bit of a problem: he wasn't hooked up to a thing.

Oh, I didn't mention, our exciting afternoon excluded a nap (well, we tried and failed to get him to sleep) so he was exhausted.  The respiratory therapist that was to set Isaiah up for the night tried to get me to keep him awake but well, no.  His normal bedtime is 7pm.  He missed his nap and was beyond tired.  I'm his mom and I said no.  

ha.

I'm a jerk.

Not really, I'm just a loving mommy.

Once the crib was in the room (um, 8 o'clock now?), we moved Isaiah over.

How cute is this?

and the ladies in charge got to gonking him up.  At first, he was not a happy camper.

But once everything was done (8:30pm) and he calmed down (that process took a good twenty minutes), he smiled his adorable smile.

It was around 9 that he started to fall asleep so I ran away bawling my eyes out. Why?  Because this was the first night away from my baby since his nicu days, and even though he daddy would be with him, I would miss him and my arms ached just walking down the hall.  The plan was for me to get my first decent sleep in over a week (teething is a struggle).  It was a good plan, really, it was.  But of course I instead woke every few hours, tossed and turned, checked my phone for updates, and willed 5am to get here.

Once it did, I went to see my baby.  I waited outside the study area until I heard him screaming, then I texted Dave something smart alecky about the crazy alarm clock sounding a lot like our baby and he came and let me in.  Turns out they were unhooking him first.  (YAY!)

He had a pretty good night.  His oxygen never dipped below a safe level.  Not once!  Oh, and did I mention that something went wrong with the c-pap and he had zero breathing assistance until 3am?  #gobabygo Dave said that at 3am, he fed Isaiah a bottle and they put a c-pap mask on him.  He was only monitored for less than 2 hours while on the c-pap.  Hopefully Isaiah's doctor got enough data.  I know he wanted a full night on the c-pap and he surely didn't get that, but given he had zero episodes with zero c-pap pressure? That sounds fabulous to me.

Once we were back at RMH, we gave Isaiah a nice bath, he cuddled a bit with Dave in bed watching The Incredibles, and then we put him in his pack and play for a nice 2 hour nap.

We had a lovely Sunday together and look forward to our Pam party with our buddies this week.  Look out Day Med, here comes some adorable OIers!

We're Alive, We Promise

Sorry for the lack of updates, friends!

When we're not crying from teething, we're cuddling, napping, briefly playing, or just taking a breath. (ha)

Happy Friday to you! This weekend Dave and Isaiah are having a sleep over at the hospital for a second sleep study (this time with his c-pap to make sure that the pressure he's currently getting is enough). aka I'm getting a full night of sleep on my own (yeah, right, we all know I'll be worried).  After that, we're having a Pam party with our friends Gavin and Silas. :)  

Be on the look out for a few updates on the blog over the next week.  The FAQs are WAY outdated and I'm hoping to add some information as I have time (hahaha. time.)

A TOOTH + Isaiah's First Baseball Game

This morning Isaiah and I had water therapy.  I was all excited to have a morning slot this week because this kid is normally such a morning person.

(FYI: Don't ever ever ever have expectations with a baby.  There is no such thing as"normal", especially when you make plans. ha)

Well we had one horrific night.  Isaiah was up every half hour crying.  We gave him tylenol to see if that would help and it didn't do a thing which had both Dave and I concerned that OI was to blame.  I finally gave Isaiah Motrin at 3:30am and that did the trick!  Isaiah slept like a log until I had to force him out of bed for water therapy (at 3:30 I had planned to cancel it.  I almost texted his PT right then...but I figured that if Isaiah had something broken, we'd be able to pin point it at therapy.)

Even though I woke him, he was chipper as could be, ate some apples and puffs, and had the best water therapy session yet.  He splashed, he reached, he kicked, he laughed. (I'm so glad I didn't cancel.)

When we got back, I decided to put off the bath for a half hour and hang out outside because it's supposed to feel like 95-100 degrees later and I want to give Isaiah time outside...and the breeze? fabulous.  

Within 2 minutes this happened...

  

(Check him out! He passed out on his side!)

Exhausted baby alert!  When Isaiah woke up, he was all smiles and I got a good look at what looks to be his first tooth cutting through!!!  It's on the bottom and it so cute.

Can I just tell you the relief that went over me?  Here I thought maybe he had something broken, or maybe he's feeling the fact that Pam is due soon, but amazingly he's experiencing a normal baby problem.  

With that normal baby problem comes a bit of an OI problem.  The tooth looks clearish, definitely not white.  This is a sign that Isaiah could have Dentogenesis Imperfecta.  It's common with severe OIers.  It means that if he has it, his teeth will be brittle.  I will start looking into when they get capped (yup, they'll cap baby teeth with DI to protect them), and today we'll be introducing a baby tooth brush into his life.

Oh well, it was nice to enjoy the normal for a moment.

Another reason Isaiah was likely thrown off last night is because he didn't go to bed until 9 o'clock!  For Father's Day, I got Dave 3 tickets to last night's Barnstormers game (They are the local baseball team in Lancaster).

Obviously, he had to bring Isaiah and I to the game. :-P

When we were on our way to the game, and I was telling Isaiah where we were going, this was his reaction:

haha, ok, not quite like that. but I feel like his expressions say "We're going where?!?! YAAAAAY!"

It was much more crowded then we expected.

We got a handicap seat so that we could bring Isaiah's stroller in with us.  The bummer was that our seats were in the sun and it was HOT last night.

At first, Isaiah didn't mind.  Once the game began, I turned him around (toward the sun) so that he could see the game...

Here's Isaiah's view.

Well, sunshine and Isaiah don't mix so well, we tried, but we didn't last more than the first inning.  

There was a lot of crying, a ton of sweating (even with his cooling froggy towel), and even some pooping (you're welcome).  (And it kind of didn't help that our seats were right below a LOUD speaker.)

I was pretty upset when Dave suggested we leave, but he was making the right call.  

I've been in a bit a of a lull lately...I'm really wanting to take Isaiah out into the world and do "normal" things....but sometimes I get smacked in the face with the fact that things aren't so normal, that we have our own normal, and that I need to accept it.

Our normal really isn't bad.  We have our baby...our baby who is TEETHING...our baby who is FREE of machines when we go out now...our baby who wasn't even supposed to live a day...

Our normal is fantastic.  I need to stop comparing us to other families and just enjoy us, because we're really pretty enjoyable. ;-)

Ok, so who has some teething tips?