Monday, June 29, 2015

Disney Days 1 & 2

Happy Monday! Are you ready for a million photos?  I hope you're on wi-fi, because if not, you may go over your data plan this week. :-p

It was two weeks ago today that we flew down to Florida!  Our flight went well for the most part; like I mentioned in my last post, his oxygen did dip below his normal when we were at the highest altitudes (good thing we had the oxygen).   If he weren't on the pulse ox, we wouldn't have had a clue!  Thank goodness for those medical tools to help keep our baby comfy. ;-)

We flew Southwest, and will gladly fly using that airline again...but that's only because of Rob, who works in their claims department.  You see, our stroller got broken somewhere between us gate-checking it at BWI and grabbing it at the gate in Orlando.  To say I was furious is an understatement.  And to make it worse, the ladies behind the desk in the Southwest office by baggage claims did not help the situation.  They were busy, and as much as I understood that, I also felt like they were blowing me off and not wanting to deal with me.  Until I mentioned the word "wheelchair" (you see, we labeled the stroller as a wheelchair.  It should have been handled as such.)....ugh.  The thing is, the stroller wasn't totally broken, just the part that holds the front cup holder on..but that holds the car seat in and protects Isaiah in crowds when we aren't using the car seat.  It being broken meant we had to carry Isaiah in his car seat through the airport to the baggage claim (along with the 26 lb oxygen concentrator, the bag of oxygen supplies, Isaiah's diaper bag, the car seat base, Isaiah's break bag, and two carry on bags).

My ears are turning red just thinking about it.

Thank goodness for Rob.  Even though "Southwest doesn't typically replace broken strollers", they decided to replace ours.  Rob had me find the exact stroller on Amazon and had it prime shipped to us.  Hooray!  We just had to use our broken one until then.

After we got things settled at baggage claim, we picked up our rental van and headed to Walt Disney World!

Ahhh love going under that sign!

We stayed at Bay Lake Tower, which is a part of the Contemporary Resort.  It's a 10-15 min walk to Magic Kingdom (MK) and the monorail rides through it.

The views of MK alone had us in awe.

This is the view from the Skyway that connects Bay Lake to the Contemporary.

After a quick walk around, we settled into our room on the 4th floor and as we waited for Isaiah's crib to be delivered, he passed out on the bed and a delivery came.

This was completely wonderful, loving, creative scrapbooking friends had this AMAZING package of happy delivered.

It included an embroidered blanket ("Super Isaiah"), Mickey ears, an engraved frame (Isaiah's First Visit 2015"), popcorn, cookies, lollipops, "My 1st" signs, a Mickey doll (and later balloons and a Donald doll were added!).  We're so spoiled...and so grateful.  Thank you again, ladies, for helping to start our trip off with some serious pixie dust.  

We spent the evening having dinner over at the Polynesian Village Resort and relaxing and before we knew it, it was time to head to bed to rest for the parks!

On Tuesday morning, we made our way over to the Magic Kingdom!
This is likely the only picture I got with the ears, because Isaiah seems to hate hats.

First stop- Meeting Mickey!!!
Look at his face!  That picture on the left is the very first moment he laid eyes on Mickey.  He was in such shock.  He couldn't take his eyes off of him.  The coolest part of meeting Mickey at Town Square is that he talks!  Good ole Magic Kingdom magic!

After Mickey, we made our way down Main Street.  It's a shame that he hates hats, because they'd be so useful in the Florida sunshine!...

Yup, no smiles in the direct sunshine. ;-)

We did our best to stick to shady spots while we made our way through the park and headed back to the new area- New Fantasyland.  We got on Isaiah's first ride, The Little Mermaid.

Don't let the picture fool you, he was so happy/excited.  He loved the music and the was great.

After his first ride, we headed over to Enchanted Tales with Belle.  

He wasn't totally impressed by meeting Disney royalty but he did enjoy the story.

After that, we tried to go on It's a Small World, but Isaiah decided to take his first Disney snooze instead...

So we headed to the shops instead.  We had reservations at The Plaza (right next to the ice cream parlor on Main Street) at 11:15 and thankfully Isaiah woke up for that.

He enjoyed a goldfish-shaped peanut butter sandwich and a few bites of the Mini Kitchen Sink. ;-)

Once we were done lunch (I highly recommend the Strawberry Chicken Salad), we made our way out of the Magic Kingdom, stopping to see the last showing of the Trolley Show.

We may have missed the opening show, but we were glad we caught this.  Isaiah's eyes were glued on all of the cast members dancing.

Once the show was over, we headed back for a good long nap and some down time.

Then it was time for Hollywood Studios!

The hat is gone! I say boo, Dave says yay...but that stage has GOT TO GO.  

We decided to visit Mickey here too...

So glad we did!  He played Peek a Boo and Isaiah was in heaven.

After that, we got to see Cousin Michael, who is now working down in Disney for a few months!  While he and Dave rode Tower of Terror, Isaiah and I took a walk and found a nice photo pass spot.

We enjoyed the atmosphere, tried to enjoy the Little Mermaid show (but it was just too loud for Isaiah), and watched Isaiah take it all in.  We learned that night that evenings would be our best bet for him to enjoy every aspect of Disney.

One of my favorite pictures from our trip...

And that concludes Days 1 and 2....I'll update more on Wednesday! :)

Friday, June 26, 2015

The Night Before Disney

Twas the night before Disney
and all through the house,
we were all stirring like crazy,
getting ready for The Mouse!

Are you catching my ode to The Night Before Christmas here?  I'm such a nerd.  

"Mom, you are so embarrassing!"

The suitcases were sitting by the front door with care,
In hopes that we'd remembered every Disney onesie for Isaiah to wear!

You'd think we'd be all nestled snug in our beds,
With visions of the Castle and stylish mice in our heads!
But alas, instead we worried, gripped with fear and dread,
A flying (empty) shampoo bottle almost put the ax in our plans, by possibly landing on Isaiah's sweet head!


Ok, enough of my butchering a classic...

So yes, a shampoo bottle seriously almost killed our vacation, less than 12 hours before our departure time for the airport.

Everything was going extremely well.  I had cleaned the shower just before giving Isaiah his bath.  I debated throwing this bottle out but I was trying to use every ounce of shampoo (you know how it goes...) so I quickly popped it back on the shelf...that is about 3-4 feet above Isaiah's head when he is in the bathtub...  As I was bathing Isaiah, we were having a great time playing, and as I turned my head for literally a second to grab the washcloth from the sink counter, the darn bottle apparently decided to take a bath with Isaiah, and all I heard was a huge bang and Isaiah crying.

And there was the shampoo bottle, sitting right next to Isaiah's head.

I never thought I'd be afraid of an empty shampoo bottle.

But that bottle (a huge BJs Wholesale Club-sized shampoo bottle), put the fear in Dave and I that night.  If that bottle hit Isaiah's head directly, it very much could have caused a skull fracture, a brain bleed, and who knows what else.

The bang was so loud.  I frantically calmly (as possible) got Isaiah out of the tub and onto our bed.  He was hysterically crying.  I grabbed the ipad and pulled up one of his favorite games and he calmed down immediately and started playing.

I messaged some fellow OI moms for advice.  There was no mark, no bump, on Isaiah's head.  It could have hit the plastic seat he was sitting on and not him.  That would explain the insanely loud bang.  The rest of the night was tough, though.  Isaiah hardly took any milk.  He kept crying on and off.  He'd wake crying from his sleep.  We spent the night tossing and turning asking each other if we should take him to the ER...but we weren't 100% sure the bottle hit him.  Given the noise of the crash, we decided that if it hit him, it would have had to of left some kind of mark, right?

Oy vey.  Thankfully, Isaiah woke up happy and normal.

This picture was taken at 5am on departure day.
(Am I the only one who thinks the lighting makes his veins look non-existent?)

It was like nothing happened.

We didn't know what to think, but we took Isaiah's cues (meanwhile, I had emailed Dr B what probably looked like crazy-mom emails), took many deep breaths, and drove down to BWI airport.

The flight went extremely well for the most part....except it was good that we had the oxygen.  Turns out his oxygen did dip when we were at the highest altitudes.  His color never changed.  He never acted lethargic.  We turned on the oxygen on anyway because, what would it hurt?'s better to be safe than sorry.  (For those in the know of oxygen sats, he normally sits 98-100%, but dipped to 88-93% when flying high)

Oh, ps, I also threw out that shampoo bottle and will never ever ever use that shelf again. ;-)


Happier updates next week- full of DISNEY pictures galore! <3

Wednesday, June 24, 2015

Adapting for Disney- Resort Prep

Packing for our Disney trip is now down to the details!

I honestly started weeks ago, gathering "essentials" (hello to every Disney onesie, pacifier, burp cloth; get in that suitcase.)  We've also put in an order to WeGoShop, a delivery service that we've used on past vacations that gets our groceries for us and delivers them to the resort the day of arrival.  This saves us time, energy, money, and room in the suitcase. ;-)

We're staying in a "studio" room at Bay Lake Tower.  This will have a queen or king bed, a pull out couch, and a little kitchenette (sink, microwave, coffee maker, and toaster).  Every room has a Pack 'N Play.

If we were staying for just a few nights, I'd be good as gold with a pack 'n play...but since we'll be staying for over a week (!), I put a call in to request a crib.  There are cribs available for use in Disney World, but there are very few.  I am crossing my fingers that one will be available for us for use for our entire trip.  When I called, I explained about Isaiah's OI, so the Cast Member noted that it's a medical need, which I hope gives us priority.  I know that Disney does its best to work their magic, but if they can't finagle this one, we plan to put Isaiah in the bed for day time naps and the pack 'n play at night.

We'll really only be in our resort to sleep, eat a few meals, and swim.  We are ready for that pool!  We found some really cute swim tops at the Disney Store with wide button openings that seem to be just perfect for Isaiah!  They are easy to get on and off and they dry rather quickly.

We purchased a larger size on purpose to make it even easier to get on and off.  Now let's hope Isaiah can get used to the sunshine so that he will enjoy swimming!  

We do plan to have a few meals in the room, so we'll be using that travel high chair that I mentioned in my last post....the bonus point here is that if we decide to ditch the idea of bringing into the parks with us, it was worth it because we'll be using it in the room. 

Here's a picture from a few weeks ago of Isaiah testing out his high chair during his recent Pam treatment.

The glory of staying at Bay Lake Tower is that we can view the fireworks show (called Wishes) at the Magic Kingdom because it's so close by!  This will help us to avoid those loud booms of the fireworks...we're a bit concerned about the booms, since loud noises can cause those tiny ear bones to fracture in those with severe OI (which leads to hearing loss)...but we aren't ruling out one night of Wishes in the Magic Kingdom if Isaiah is up for it (we'll just make sure we are far from the castle). ;-)


Ok dokie, that about sums up all of our planning thoughts for our first family vacation to DISNEY WORLD!

AHHHH We can't wait to go and share the likely billions of photos that we will take of Isaiah experiencing his first Disney World Experience.  

We're too excited to sleep! 

Monday, June 22, 2015

Adapting for Disney- Park Prep

Oh my gosh, so besides trying to figure out what rides we will be able to take Isaiah on, when we take our first family vacation to Disney World, we have to think of Isaiah's needs.

First, there's the normal kid stuff...sunscreen, hats, sunglasses, extra clothes, etc.

Then we have to think about Isaiah's needs in reference to his OI.  We plan to bring our travel "break bag" and Isaiah's emergency folder from my car (has a list of Isaiah's current meds, surgery dates, emergency contacts, etc).  Doses of his pain meds are always with us but in an ever-changing and undisclosed location. ;-)

Let's hope we don't have to use anything in this bag.

We are also using Isaiah's stroller and labeling it as a wheelchair.  That will allow us to bring it into restaurants and shows as needed.

Then we have to think of the challenges we think we will face in the parks....two of those challenges that we have been focused on have been 1) the heat and 2) meal time.

1) The Heat

For the last year, we've been googling and searching like crazy for ideas on how to help Isaiah beat the Florida heat...I have been watching the weather forecast and the temps are predicted to be in the upper 90s while we are meeting Mickey.  We do plan to walk through stores to cool down as needed, and are grateful that many of the rides and character meet and greets are now air conditioned, but still, Isaiah is no fan of hot summer days.

We purchased some Frog Toggs that we plan to pack, but in all honestly we don't think they will give Isaiah enough relief.  We also started putting Isaiah in his stroller without his Snuggin Go pillow, although it offers him perfect support for his spine, it also shoots his body temperature up and makes him sweat like no tomorrow (so he'll be getting a vacation-length break from it).  We found a stroller cooling pad that seems promising, but we were still nervous.

Isaiah's OI BFF has a very creative daddy who came up with a DIY cooling system which runs off of batteries that offered us the most promise.  After he shared how he made it, Dave went to town creating his own (that he researched to be approved to go on the airplane with us), making some modifications and using the cooling pad that he purchased.  If this works well, I plan to bug Dave and Gavin's daddy about getting this sucker patented. ;-)

It hasn't been hot enough to for us to truly try it out at home, but I hope to give you a full report of its success/failure after our trip...unless I really can convince the guys about that patent. ;-) lol

2) Meal Time

Isaiah's head/torso control has improved so much recently that we thought we may be able to use the standard high chairs in restaurants for our vacation...but then we thought about it, and realized we'd still have to bring padding and we were concerned that if Isaiah was hot/tired, that he wouldn't be able to support himself.  Also, we didn't like the idea of Isaiah being out in the aisle.  We did briefly come up with an idea to put a small boogey board behind him in the standard high chair, but some places have rules against that.  

We know that since we're using his stroller as a wheelchair, that we can bring it into any restaurant and he can sit in there...but I know he can be a sweat pot in his stroller and I wanted to give him a break from it.  It is an option for us if we need it though, which is a relief to have a back up.

We also have our laps, but I know us when it comes to Disney...we will be hot, tired, and wanting to can be an option at meals but every meal time cannot take place on our laps.

We did some searching at local baby stores and on and found a fantastically amazing portable high chair.

Below is the Peg Perego Rigalto.  We ordered this chair just to check it out (since we couldn't see it in stores( and we fully expected to return it ( has free shipping/returns) but we fell in love immediately.

 It is a travel chair that folds up very small and goes into a travel bag (in the bottom set of pictures).  It is six pounds.  It has foam padding on the back and bottom. It has a tall back which is what Isaiah needs for support when he's tired. Its tray is removable and the seat can raise or lower to sit at the table.  It has sturdy arms that Isaiah likes to grab on to to pull himself up on.  It is amazing.

We love it. We've already started using it when visiting family and during our recent Pam trip at DuPont.  Even if we decide not to bring it into the parks with us, we're thrilled to have it because we can use it in our resort room for meals there.


Alrighty, that wraps up our basic prep for our future fun in Disney up is prepping for our resort stay!

Friday, June 19, 2015

Father's Day

I've been thinking about writing this post for quite a while...I literally made this post weeks ago, named it "Father's Day", and inside the text box I had written "father's day/dave's bday".  And that's how it has sat.  Today is Dave's birthday and Father's Day is just two days away.

I had a hard time writing about Dave, so I've decided to write to him...


Dear Dave,

Here you are in year two of getting to celebrate Father's Day as a daddy.  I know you don't think Father's Day is anything more than an excuse to buy cards, :-P but it is more.  In our family, it's a day to celebrate you.

You are an amazing daddy to Isaiah.  From the day we found out we were pregnant, you were excited.  You had visions of Legos, football, and peekaboo.  We found out about Isaiah's OI and you learned about it, you accepted it, and you love him so fiercely.

Isaiah's OI has changed some of your visions (tackling Isaiah is out, buddy), but it never changed how much you love him...actually, you know what?  Yes it did.  You love him even more.  You know how blessed we are, you know how lucky we are, and you show that in how you interact with Isaiah.

You are so gentle with Isaiah.  I love when you try to make him laugh and when you succeed and you you get this look on your face that makes the corners of your eyes crinkle in just that way that makes my heart smile.

I love when you play guitar with him and you position it in such a way that Isaiah can play along with you.  I'm thinking I am doomed in the fact that Isaiah will have a drum set one day so that you two can start a band together.

I don't tell you enough, but I am grateful for you.  Isaiah is grateful or you.

Thank you for being the best daddy you can be to Isaiah.

Happy Birthday and Father's Day!

Your nagging wife. ;-)


Happy Father's Day to everyone our there that celebrates it.  <3

Wednesday, June 17, 2015

Prepping to Travel

We've been planning our trip to Disney for some time...but one question bugged us for so very long.  Do we drive or fly?

There are pros and cons to both.  The biggest pro/con for us is the time.  Driving takes 14 hours (not counting stops) but flying just takes about two (of course that doesn't count the travel time to get to the airport, or the wait in the airport, but it's still significantly less time).  There is also cost.  Driving would technically cost more for us because we have Southwest "points" no paying cash for tickets as compared to paying for gas.

Before we made our decision, we asked Isaiah's doctors at duPont about their thoughts on flying.  Because of Isaiah's history, it's important to us that they gave their blessing, especially Isaiah's pulmonary doctor.  He originally said we should have zero issue with flying and wished us lots of fun...but after some thought, wanted to do a test to be sure Isaiah could handle the change in oxygen.  We scheduled a test called a spirometry to take place before the last day of Pam.

This picture is from the last day of Pam in May.  Isaiah came into Day Medicine like a bear because of his Spirometry test...Isaiah's nurse called Child Life and had them come down to surprise him (and his OI buds) with gifts to cheer him up.  We were so appreciative and it really did lift his spirits.

According to Dr H, at room air (what we breathe everyday) oxygen is at 21%, but when flying, it is measured 15-18% on an airplane.  Just walking from a seat to the restroom on a plane, a typical person's oxygen level can dip.  We were already planning on bringing Isaiah's pulse oximeter machine (that is a machine that measures his oxygen level and heart rate using a sticker attached to his foot. He sleeps with that sticker so that we can monitor his oxygen level because of his Apnea) to monitor his oxygen level if he napped on the plane..turns out he'll be wearing it the whole flight.  

Isaiah's normal oxygen saturation sits between 98-100% so we aren't expecting a problem if his oxygen dips, but want to be prepared.  The test that he took at duPont involved wearing a mask that lowered the oxygen he was breathing to the levels of an airplane.  

Isaiah HATES masks.  He actually should be using a cpap mask at night but we still use the nasal cannula because it's less of a fight.  His hatred of masks was evident during his test (which showed Dr H first hand why we are saying no to the cpap mask), which meant the pulse ox wasn't completely reliable; his crying throws the whole thing off and it can't accurately pick up his pulse.  He fought 90% of the test until he finally just gave up (there were tears from this momma who was holding him and trying to keep him calm).  Dr H was there and even held Isaiah's iPad while Mickey played to try to keep him calm.

We got through it.  Even with the crying, the lowest "dip" in his oxygen was a healthy 93%.  Although we all agreed that we think Isaiah will be ok on the plane, we'd prefer to err on the side of caution so we will be bringing an oxygen concentrator along with us on the plane to and from Florida.  Dr H checked out Southwest's website and printed out their letter and also contacted our oxygen company to provide us with the travel oxygen concentrator.  (A concentrator is a device that concentrates oxygen from the air to supply an oxygen enriched gas mixture if needed.  We won't be bringing any oxygen tanks with us.)

We've also contacted Southwest and the TSA to give them a heads up about everything.  

The TSA will be providing a "helper" for us in the airport to help us get through security and get to where we need to go.  Southwest has us marked "medical" so we'll be boarding the plane first.

I have a letter from Dr B about Isaiah's OI and his fragility if the TSA feels that they need to pat Isaiah down....this scares the daylights out of me.  I'd prefer to strip him than have anyone touch him (based on experiences with some medical professionals in the past being grabbier than safe....I told the woman I spoke with about this on the phone and I likely got us flagged to all get searched.  LOL 

We bought Isaiah his own seat with our points and plan to bring his infant car seat for him to sit in at take off and landing, just so we have the option.


Ok, so sorry for the boring-ish post ha (I call em like I see em), but this is just a fraction of what we've had to do to prep for our upcoming trip.  Hopefully I'll have a post ready soon about how we're prepping for Disney itself! (yaaay)

Monday, June 15, 2015

Prepping for Vacation

We will soon be headed south for our first family vacation (unless, of course, you count PAM-cations)....can you guess where we're going?  I'll give you a hint or two from old photos...

Can you figure it out?

My hints are pretty tough....

Who guessed Disney World??!?! If you did, give yourself a pat on the back.  :-P

Whoop whoop!  We're so excited! We're headed to Disney World soon for our first vacation as a family....I mean, we could have taken a weekend trip to the shore for our first trip, but hey, go big or go home.

Dave and I fell in love with Disney World when we went for our honeymoon seven years ago.  (7 years? Already!?).

Look at us youngsters!

We went back each year, even joined the Disney Vacation Club (DVC), until we bought our [first] house, then our focus was on making our fixer upper a home and starting a family.  The Vacation Club is basically a time share.  We "own" points at Bay Lake Tower (if you are familiar at all with Disney World, it's connected to the Contemporary Resort which is the A-shaped resort by Magic Kingdom that the monorail goes through).  We get our allotment of points each year and even though we "own" at Bay Lake, we can stay at any DVC resort.

The last few years, we've rented our points to friends; this year we're using them for ourselves to introduce Isaiah to our happy place.  We got clearance from all of Isaiah's doctors at DuPont....more details to come on that later this week.

For now we are packing and crafting and figuring out what will be best for Isaiah...

Yes, I did make my own luggage tags and pacifier clips. ;-)

AHHH We're so excited! This week I will share details about our upcoming trip...what we've packed, who we've called, and so on.

For now, I will leave you with a video of my most favorite thing about Disney World...the opening show at the Magic Kingdom....I can't wait to witness Isaiah see it for the first time!  

Friday, June 12, 2015

22 Months!

I swear after his second birthday that I will stop counting months (out loud and on the internet...ok Sanne? ha) but our baby turned 22 months yesterday!  

He's an inch taller but weighs less than a month ago, closer to 15 pounds now; we're getting that figured out and believe it's partially due to his being a picky pants, teething torture, and the fact that his shunt is doing its job in relieving the extra spinal fluid in his head and his head shrinking a centimeter! (woot woot!)

Even with the weight loss, he is getting bigger as he's sizing out of his 6 month clothes!  He's basically moved on to 9, and even some 12, month onesies.  

His vocabulary has taken off.  It's mostly mimicked but oh my goodness, so many new words and sounds!  Giggle, oink, turkey, rabbit, donkey, llama, owl, pirate, ARRR (like a pirate), ROAR (like a dinosaur), eyes, ears, mouth, head, diaper, nuts (not included in conversations about diapers LOL), Ayla, Trista/Tricia, Uncle Matt, castle, Hakuna (ha, we were watching the Lion King), "Hi dad", Epcot (all these Disney words, can you tell what we talk about around here?).


He's starting to really learn to point and count, and blow kisses (I am dying to get this on video)!  His communication has really improved recently. :)

His favorite toys are a helicopter that he places shapes into, his cash register, everything Elmo (Disney blasphemy), and cookie cutters. 

He's up to eleven teeth now, too! And survived experienced his first dentist appointment.

Happy 22 months (and one day), Isaiah!  We love you to infinity and beyond. <3