Monday, June 30, 2014

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. 

Friday, June 27, 2014

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!  :)

Wednesday, June 25, 2014

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.

Monday, June 23, 2014

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.  


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!

Friday, June 20, 2014

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.)

Wednesday, June 18, 2014

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?

Friday, June 13, 2014

Happy Father's Day

With Father's Day just around the corner, I've been taking a few moments here and there to reflect on the relationship I'm lucky enough to watch flourish before my eyes.

Even when Dave is traveling for work, thanks to today's technology, Dave is able to make Isaiah laugh.

In just 10 short months, the two main men in my life have already formed an amazing bond...

Happy Father's Day (a few days early) to all the daddies in the world.  Enjoy your day!

Wednesday, June 11, 2014

10 Months Today!

Today, our Isaiah is 10 months!  Wow! 

He's learned how to wave this month.

And he's working on sitting up on his own (with a little help from the couch).

He's now over 13 pounds and is wearing 3-6 month clothing for the most part, but he does still fit into his 0-3 month stuff. (Truth be told, I just got sick of looking at the same stuff.)

He started sleeping off of his mattress pad, and now rolls freely throughout the night (well, as freely as the c-pap allows).

He's gotten more tolerant of eating, and is very interested in table food.  He's the king of Puffs. His favorite pureed food is a pack of pears, but he's also very into sweet potatoes.

Happy 10 Month birthday, Love Bug! <3

Water Therapy at Home

Recently, we made a big purchase in order to give Isaiah water therapy at home.  He was only approved for one measly half hour session a week at Schreiber...which honestly has a tendency to get cancelled if he has an ear infection, a suspected break, or if his PT needs the day off.  The constant cancellations don't work for us, and although we are definitely continuing (as his PT is fantastic and teaches us ways to help Isaiah), we wanted to be sure he got at least some time each week in a pool-like setting.

This weekend we set up our new portable hot tub, called a Soft Tub, on our little back patio.  It's just about two feet high, which is just perfect for Isaiah.

At first, he wasn't too sure about the adventure...especially adding in the wet suit....

but he warmed up fast.

Water therapy is so important for Isaiah.  It gives him the a place to safely work on trunk control and strengthen his muscles; strong muscles do a fantastic job supporting weak bones.    

Currently, we are encouraging lots of movement, sitting up, reaching...and vegging in bubbles...

I love that it even has jets!


For those that are friends with me, you may have noticed Isaiah and I were having a tough day on Monday.

So, every mom has a moment they screw up, right? I had numerous moments recently.  It started a week ago when I called in Isaiah's Prevacid prescription.  I knew the box said "dr auth required", but when his other med's box said that, the pharmacy called us, called the doctor, and got it all squared away for us.

Well, Isaiah's Prevacid is compounded, which I was told is hard to get in many local pharmacies, so we were stuck using Walmart pharmacy- great for convenience, terrible for service.  (Yup, I'm talking about you, Walmart on Fruitville Pike.)  Not that you ever expect great service at a Walmart, but seriously, we have had trouble every single gosh darn month we've needed Isaiah's Prevacid.  We always have to come back at a later date, they somehow no longer had Isaiah's secondary insurance info, they were out of stock, etc.

Ok, I'm ranting.....well, apparently at Walmart, when the box says you need doctor authorization, you have to call the doctor and get things moving; apparently Walmart's system disregards your request and somehow has no information about your request for your prescription in their system.  I hadn't called the doctor myself...and because every other time I've called in his script and been told to come back 2 days later than what I was told by the automated voice on the phone, I waited to go get the medicine.  I waited until I needed Isaiah's Prevacid.  Stupid stupid stupid.  That was on Saturday, ya know, not a business day.  LONG story short, I was told by Isaiah's doctor's office that the script has to be re-approved which would take DAYS.  In those days, Isaiah got more and more grumpy.  He'd arch his back.  He'd shake his head like crazy.  He'd stretch and cry. He'd burp a lot more and get really upset after burping.  OT was wrecked and should have been cancelled because he was a mess when eating.  He was definitely feeling the lack of his medicine and it was all my fault.

To make matters worse, Isaiah ended up flipping backwards when I was holding him/prepping his lunch on Monday, hitting his head (thankfully while wearing his helmet) on the cabinet door.  I was confident he broke something.  His neck, a bone in his spine, a rib...he cried for a long time.  We got pain meds on board.  This was also my fault.  I should have set him down to prep his food.  Also, if he had his Prevacid? He wouldn't have flipped back.

It was awful.  And I was majorly beating myself up.  I did a lot of wallowing into a bowl of ice cream.  I did a ridiculous amount of crying.

Then I dropped my lap top. Oh, and I noticed Isaiah has some drainage coming out of his one ear.

More ice cream.  More crying.  Grab the drops from his medicine bin, you know the drill now, Vicky...

After a miraculous full night of sleep, I ended up calling our insurance company to see what was going on with the Prevacid prescription and the wonderful man that answered helped me get everything fixed. After the prescription was approved, I called our other pharmacy asking about the particular type of compounded Prevacid, and THEY HAVE IT!  Not only do they have it, but they called Walmart for me to transfer it! Woo hoo to moving on to the local 24 hour pharmacy that helps to make its customers' lives easier. (Yup, that's you CVS on Lititz Pike, behind AC Moore.  Thanks for being awesome.)  We were able to pick it up within an hour and get it back into Isaiah's system.

Another miracle that occurred? On Tuesday morning, Isaiah was rolling all around, playing, and watching Mickey.  He wasn't totally himself; he wasn't all smiley...He was full of burps and grunts after said burps, but he wasn't crying like after he flipped back.  Maybe he's ok? We stopped the major pain meds and all has seemed ok so far...fingers crossed he didn't actually suffer a break in the flipping fiasco on Monday.

Oh, and miracle number 3? My laptop survived.  It makes a crazy sound when I open it, but it works gosh darn least for now...

So, I'm done being mad at myself for what has occurred the past few days, I'm not happy with myself, but we all have days like this now and then.  It just stinks when your mistakes affect your kid.  I'm ready for my little love bug to be back to his smiley self now.

Oh hey, Isaiah is 10 months old today! Bonus post later today! It'll be more exciting and less about my wallowing in ice cream, I promise. ;-)