Friday, July 31, 2015

Tips for a WDW Vacation

After a week full of too many (frustrating) phone calls, I'm back to share tips to help make a Disney trip magical.

Disney is either something you are totally into or totally don't understand.  It's a place to feel like a kid again and let go of your worries. Anyways, without further ado...

These tips are likely pretty silly, but we implemented them throughout our trip and they really helped us to enjoy our vacation.

See that camera in Jake's hands?  We got that on clearance at the Disney Store outlet near us for a few dollars and it was one of Isaiah's favorite toys the whole trip.  (As a matter of fact, it still stays in his diaper bag for when we are out and about because he loves it so much.)  Buying that, and other souvenirs, t-shirts, etc, prior to our trip saved us quite a bit of money (as compared to buying them in the parks) and really surprised Isaiah.  We also bought Disney gift cards every so often over the last year before our trip.  We used them, instead of a credit card, to pay for the majority of our room charges....and that way the trip was basically prepaid for. (And if you are a member of a big box store like BJs or Costco, you can get the gift cards at a slight discount, saving you a few dollars.)

Make sure to get lots of family pictures on your trip!  You can easily do this without a selfie stick (I can't believe those things are real, and by the way, are banned from Disney parks, so just don't bring one).  Just ask the photopass photographers that you see throughout the parks to snap a few pictures with your camera/phone for you.  They'll likely snap some with their camera too and then give you a card if you want to access/buy them, but there is no obligation to buy photopass. (But if you know you'd want it, look into it at least 3 days before your trip because you can buy it at a discount.)

Also, lots of Disney Cast Members offer to take photos for you.  We'd often stop and I'd go to take a picture of just Dave and Isaiah, or Dave would go to snap one of Isaiah and I, and a Cast Member would see us and offer to take a family shot for us.  If they offer, say yes!  Having those photos to look back on is just wonderful.

It can be complicated, but Disney lets you schedule things at least 6 months before the date.  If you have rides, some character experiences (like the Character Spot in Epcot, Anna and Elsa in Magic Kingdom, etc), or restaurants that are priorities for you, schedule them as soon as your window opens because things do fill up fast.  A fastpass (which does not cost anything extra) is wonderful because you book it for a certain time.

Say you got a fastpass for meeting Mickey in Magic Kingdom.  You would have gotten it (for each member of your party) for a certain hour.  You need to check in within that hour timeline by scanning your magic band or park ticket at the fastpass entrance.  If it glows green, you're good to go in!  You wait in a short line (much shorter than standby) and meet the mouse himself...he talks in Magic Kingdom, FYI, and it's awesome.

Fastpasses save a lot of time.  Also, you can change them using the App on your phone (My Disney Experience) while on your trip, it just depends on availability.

When it comes to meals, we always schedule asap (Dave seriously sets an alarm for midnight 6 months before the day).  One new thing we learned this year was that you can even schedule the food for your meal ahead of time (about one month ahead) for lunch at the new Be Our Guest restaurant in the new Fantasyland in Magic Kingdom (holy run on sentence).  At the time, I thought it was the weirdest thing ever that I had to decide what sandwich I'd want a month later, but then we got to the restaurant and saw the line of people waiting to put their orders in....and we just checked in, walked right by that line, found a table, and waited for our lunch/dessert to come right to us...yup, not so weird.  Awesome is more like it. (Also, you can change your order...if you want to wait in line.)

Midday breaks are my life saver in Disney.  In case you didn't know, I can be a giant whiney pants, and when dealing with the heat and humidity of Florida summers, everyone who doesn't know that I am a giant whiney pants finds out rather quickly. ;-)  So we've learned that the best way to make it through the day, especially with Isaiah, is to start as early as possible (bonus: rope drop shows!).  This trip, with Isaiah, we typically went from 8:30 until about 11:00am.  We'd grab lunch and then head back to our resort for a nap.  We'd rest and then head back out around 5 or 6, grabbing dinner, and stay out until about 9.  This helped us to avoid the majority of crowds and the highest temperatures of the day.

Some people believe that you need to stay in the parks the whole day because tickets are expensive (gotta "get your money's worth")....but we believe in enjoying our time in the parks...and it wouldn't be enjoyable for us without that midday break. ;-)

I feel like this last tip is corny, but it can be an important one: let the magic come to you.  Maybe you've heard about people being selected to be in a parade, group shots of characters occurring, or a resort room upgrade (one family we met this last trip got upgrading from Port Orleans to the Grand Floridian!!).  My suggestion for you is to be happy for those people.  Enjoy your trip with every ounce of your being.  Act like a kid!  And it's possible that magical moment will fall right into your lap.

Dave and I were once chosen to be a part of the Jingle Jungle Parade in 2010...and you know why?  Because we were completely immersed in what we were about to do- get pictures with Winnie the Pooh and Friends (seriously).  We were excitedly walking down the path when we were casually asked if we were enjoying our trip, when we replied "oh yeah", the Cast Member asked us if we wanted it to get even better.

We said "of course".

It got better.

Not every magical moment will be that big, or include such a fantastic wardrobe, but it will feel that big if you let it.

Disney World is huge and there is a lot to see; don't expect to see it all.  Take your time.  Soak it all in; the atmosphere, your company, the experience.  Don't worry about what to do next; focus on the moment you are in.  Put your phone away, put your camera down, and just be there.

Our favorite magical moments of this past trip were of Isaiah's reaction to rides, meeting characters, and the interaction we had with Cast Members throughout the park.

If you have a trip planned for Disney World, we hope you enjoy every moment with your friends/family.

Have a magical weekend! :)

Monday, July 27, 2015

Tips for a WDW Vacation with a Child with Special Needs

Can you believe it's been over a month since our Disney World vacation?? Me neither!  It feels like just yesterday.  Our trip was truly magical, thanks in part to our [over] planning.  I've received a few messages asking for tips/personal experiences on taking a trip to Disney.  I've tried to narrow my thoughts down to ten total tips.  Five specifically for those going with someone with special needs and five tips that I think everyone would benefit knowing before they go.

Today's post focuses on headed to Disney World with a child with special needs.  Expect a second post about tips for everyone later this week. ;)

If your child has a history of lots of hospital visits, respiratory issues, etc...I personally think it's a good idea to pass the idea of going to Disney World to your child's doctors.  We mentioned it at one of our Pam visits to Isaiah's medical team and at every appointment to his various specialists over the six months prior to our trip.  Because of Isaiah's history of respiratory problems, we made sure to ask Isaiah's pulmonary doctor since Isaiah would be flying and because of the heat/humidity down in Orlando...we worried how it would affect Isaiah.  It's good we did that because Dr H ran a test and had us bring oxygen with us on the plane- we needed it.  Asking his neurosurgeon brought us relief because he assured us that the pressure changes of the flight wouldn't mess with Isaiah's shunt.

Before to our trip, we also looked into the hospitals in Orlando.  Most go to the local hospital for emergencies, but we knew that Nemours is down there as well.  Unless it was a real emergency, we planned to take Isaiah to Nemours if we had any issues since they'd have access to Isaiah's entire medical record in the system....thankfully we never had to worry about putting our plans into action this trip.

At the advice of a few other special needs parents who have flown, we looked into contacting the TSA because I was very nervous about the security check.  I was worried someone would have to pat Isaiah down and they'd inadvertently hurt him (not to mention how he has the shunt and port inside of his body).  I was also worried about unloading everything to be scanned and I wasn't sure what to expect with how they'd "scan" Isaiah.  Before calling the TSA, we found information on their website about a Passenger Support Specialist, so when we called (you should call at least 72 hours before your flight), we asked for a support person and they made notes on our ticket information.  I gave them details about Isaiah's conditions and what I expected of them and asked what they'd expect from us.

When we arrived at the security check in BWI, we mentioned that we had requested a support person to the first TSA agent that we saw, and after a brief delay (turns out they never got that memo), a wonderful TSA agent appeared.  We had been advised to get in line, but she pulled us out (initially felt like a heart attack moment), and had us go around everyone.  She had our tickets and IDs scanned and quickly helped Dave get all of our stuff to get screened.  She was patient with my pulling Isaiah out of his car seat and even helped us problem solve with the other TSA agents on how to screen the stroller since it wouldn't fit in the x-ray machine.  I was able to hold Isaiah and walk through the metal detector with him in my arms and was met by an agent who swiped my hands and tested them for bomb residue.  While we waited for my test to clear, our support person and Dave gathered up our stuff and I was allowed to put Isaiah into his car seat on the stroller.  Once I was cleared, we were sent off on our own.  If we needed assistance, our support person would have helped us to our gate, but we declined knowing they were busy and that we could figure it out.

Our security experience was similar before our flight home from Orlando, except they had gotten the memo that we'd be needing some help. ;-)  Everyone was wonderful and we truly appreciated the patience and extra hands.

Since we were flying with oxygen, Dave contacted the airline we were flying with about two weeks before our trip.  We found out that because of the oxygen and Isaiah's OI, we were eligible for medical pre-boarding.  We did the typical online check in online 24 hours before our flight, but when we arrived at the gate the day of our flight, we talked to a Southwest staff member about a pass for medical pre-boarding.  We also spoke to her about checking Isaiah's stroller as a wheelchair....but we didn't push it.

Strollers and wheelchairs are tagged differently unless you have a stroller marked as a wheelchair.  If we would have made sure to push the wheelchair label, I don't think our stroller would have ended up broken (side note: I think it's ridiculous that strollers are basically handled with the same respect as a suitcase)...thankfully Southwest rectified the situation and replaced our stroller.

So, if you are treating your stroller as a wheelchair (because your child can't move independently due to a medical condition) be sure to have it tagged as a wheelchair by the airline before it's gate checked.

Before Isaiah, I'd think you're crazy if you choose to drive if you're staying on Disney property. They offer free transportation (busses, monorails, ferries) that I find to be mostly efficient and convenient.  But then Isaiah was born, and when I thought about Disney transportation, I thought about busses stuffed to the gills and worries of people banging into me holding him.  I thought about him sitting in my lap instead of his car seat.  I thought about having to fold up the stroller to get on the busses, load that and our park gear along with ourselves and Isaiah, and thinking of how we needed to take our time with things (we can no longer go our Disney speed of years past) and I was nervous. 

Renting a vehicle was the best decision we could have made.  Since we were staying on-site, we didn't have to pay to park anywhere.  We didn't have to wait in lines for any Disney transportation unless we chose to.  Since we stayed at Bay Lake (connected to the Contemporary), we were able to walk to the Magic Kingdom, leaving us to only drive to the other three parks and Downtown Disney.
If you have a handicap tag (Florida law allows temporary disability placards from all states), be sure you can use it in a rental vehicle, and if so, use it!  When driving in to the parking lots for the parks, be sure to follow the blue line on the road, that will guide you to the handicap parking area.  Most handicap parking areas for the three parks we drove to were very close to the park entrance and no tram car ride is needed.  (I don't know anything about the MK parking experience since we didn't drive there.)

For some reason, I can't think of another word besides "quirk" when I think about Isaiah's hatred for the sun shine (yep, I know it could be because his schlera is blue is so his eyes may be ultra medical proof of that thus far for now, I call it a quirk) .  Did you know he hates the sun?  If we go out, we try hard to stay in the shade (another quirk- he hates sunglasses with a passion and is only now just tolerating wearing a hat, as long as it's specifically his green Mickey Mouse hat. Oh he also hates elevators.  I could tell you stories about that one.)  When in the parks, we avoided the sun by walking through the shops instead of out and about...saved Isaiah's eyes, but not our wallet....

We found out that the pool at Bay Lake is in complete shade in the we worked with Isaiah's hate for the sun by only taking him to the pool in the evenings...we'd normally go in full sun in the past, but we preferred Isaiah enjoy his time splashing, not closing his eyes avoiding the sun glaring off the water.  The memories by the pool from our vacation are some of our favorite; we were doing something he loves in an environment that was comfortable for him.

When it came to the elevator issues, we made sure to hand Isaiah a toy before we hit the button for the elevator or I'd hold him for the ride.  Sometimes if it was just one floor we were traveling, I'd carry him up/down and Dave would meet us with the stroller.

My point here is....if you know of something that could cause anxiety and/or unhappiness for your child, and you can easily come to a simple solution, go simple.  We tried very hard to make sure Isaiah was as happy as possible in Disney World, it was his vacation after all.

When we were planning our trip to Disney World, I knew they had pack n plays available in each room.  Six months before our trip, that worked for me....but then as we got closer, I got worried that a pack n play wouldn't be supportive enough for nine whole nights.  Isaiah slept in a pack n play when we had night nursing, but he had his mattress pad too.  He's too big to sleep on that mattress pad even though I had read that they don't have cribs to use, and if they do, it's just a few, I called and asked....they put a note about medical necessity on our reservation and guess what- they had one!  It was a cute tiny little thing with a Mickey sheet and was just perfect.  The mattress offered Isaiah great support and he slept just as well as he does at home.

I'm sure we would have been fine with the pack n play, but having the crib was a huge relief.  I'm glad we asked.

Also, on our first day in the parks, we went to Guest Relations in City Hall (we were in Magic Kingdom) and asked about a DAS pass and marking our stroller as a wheelchair.  We weren't sure if Isaiah would be eligible for either but it turned out he was!  DAS passes can be tough to get nowadays thanks to some stinky people in the past who took advantage and made money off of the system...Honestly, we hardly used the DAS pass, we stuck to using our Fastpasses (which anyone can and should use, you just have to sign up for them prior to your trip or at the designated spots throughout the park), which kept us out of lines, but it was nice that it was available on our magic bands if we needed it.  We used it once because the people that were in line around us were just too rowdy and made us nervous...we stepped out of line and talked to a cast member about having the DAS.  She gave us a return time so we walked around the shops nearby a bit until it was time to get on the ride.

Having the stroller marked as a wheelchair by Disney allowed us to bring our stroller almost anywhere we needed it- in restaurants, to shows, and through lines of rides.  For example, we went through the regular Fastpass line for the Buzz Lightyear ride.  Once we got to where everyone goes running for their car, we were directed down a small hallway to the exit of the ride.  Once the riders exiting were cleared, we were able to get Isaiah from his stroller and walk to our car.  The Cast Members always offered to slow down the moving walkways if we needed them to and gave us the space and time we needed to get into the ride safely.  This was really amazing because we honestly moved much slower than the typical rider, so having the extra time to get adjusted before the bar came down or belt had to be on was a huge help to us.


More tips/experiences later this week!  I have a goal of Wednesday but my attention span is lacking lately with our insurance issues, birthday prep, and well, parenting. ;-)

Friday, July 24, 2015

Pam Recap

Sorry for the lack of midweek posting....some things got the best of my brain and I just couldn't bring myself to open the blog.  There's some confusion with our insurance and Isaiah's care this past week...and once things are done and settled I'll likely share what happened (if that's legally allowed), but for now, let's keep it vague so I don't go into a panic attack...

This is Isaiah's "Mom, can I have a ball or maybe eight of them?" face.

Good thing this cute kid is in our lives to distract us from our worries.  

We're home from DuPont. We got home Wednesday night after what was a wonderful trip in regards to Isaiah.  Truly, Isaiah was a rockstar.

Isaiah tried to take over the magic show at the McDonald House on Tuesday night.

He was pushing himself everywhere he could...we were able to visit the NICU and see some of his old doctors and nurses.  He wheeled laps around Day Medicine while his pamidronate was flowing.  He was all over the place at the McDonald House, and it was thrilling to have people who have seen him in the past tell us how impressed they were with his progress.

He even showed off for Dr B and his PA....lifting his head like this...

and um.....even showed them how he is for real trying to crawl.  ISAIAH is trying to crawl!

The last two months, Isaiah has made leaps and bounds...but the most have been within the last two weeks that he's had his wheelchair.  He's talking more.  He's moving more.  He's pushing himself physically beyond his own boundaries.  It's amazing.

Dr B seemed pretty darn impressed with the point that he mentioned a magic word...RODS.

We think maybe maybe maybe it's time to start talking RODS.  For those that are reading this and thinking "uuuuh, what does that mean?", well, you know how the bones in Isaiah's legs are bowed?  Dr K will at some point place rods in those bones, straightening them and giving him something stable to (someday) possibly walk on if Isaiah is interested in that.  They are also basically internal splints, helping to avoid more severe fractures that can occur with extra movement/weight bearing.

Dr B has signed Isaiah up for a September OI Clinic appointment. OI Clinic is basically a cluster of appointments with Dr B, Isaiah's geneticist, Dr K, his orthopedic surgeon, and a PT at Dupont.  It's there that we will talk about rodding surgery, Isaiah's progress, and more (well, I don't know because it'll be our first clinic! lol).

I'm hesitant to get too excited.  Partly because of the issues we had this week with insurance, and partly because I don't know if Dr K is really ready to talk rods yet....

but gosh, RODS! AHHH! I won't lie, when I see Isaiah start to try to crawl, I hold my breath, worrying about the possibility of a fracture...

But I suck it up and help him in ways his PT has shown me...because CRAWLING IS AWESOME.  I make sure his legs are inward so his hips are lined up correctly, and we're working on helping him get that darn right arm out from under his body....his pushing his wheelchair should help with that too.  It'll really help him to build his upper body muscles, which will help him to hopefully lift his upper body before we know it.

Guys, there was a time I didn't think I'd ever be able to talk about Isaiah crawling.  And lifting himself with such strength!  Ahhhh!  He is a determined little guy, and we are very blessed parents.

Sunday, July 19, 2015

Pam Time!

Yesterday we checked in to the Ronald McDonald House, our home away from home, for Isaiah's next Pam-cation ;). For those new to the blog, (hi there!) Pam is short for pamidronate, the treatment that Isaiah gets to help his bones. We come to DuPont every eight weeks for it.  It's a treatment that takes 3-4 hours a day, each day, for three days, so we stay at the McDonald house across the street to make it easier on us.  It's an outpatient treatment so we do it all together. As Isaiah gets bigger, the amount of days we do this will be less, so at some point we'll just be doing this one day every 16 weeks (can't wait!).

For now, we take advantage of having the McDonald house across the street and make a little vacation out of things. Usually when we arrive, Isaiah has a hissy fit, but this time he rolled in with pride. He wanted to check everything out.

We had a great evening with his buddy, Gavin, and headed to bed early to ready ourselves for the first day. 

The first day of Pam is always the toughest.  Isaiah has to be weighed, measured, and accessed. When I say "accessed", I'm referring to the nurses accessing the port in his chest and getting it ready so that his IV fluids (the Pamidronate) can flow. If he didn't have the port, they'd start as IV. 

We're adding to the long day with a check in with audiology late in the afternoon. 

I'll be updating Isaiah's Facebook and my Instagram (both of which you can get to, whether you are on either or not, by just clicking on them over on the right side of the blog so keep an eye out. :)

Friday, July 17, 2015

Photos for DuPont

A few months ago, I was asked if Dave and I would consider having a professional ad agency contact us to work on some advertising footage of Isaiah for AI duPont.  As you know, I feel very strongly for duPont/Nemours.  It's a scary thought, but when I think about if we would have stayed with our first path of care, I don't think Isaiah would be alive.

Clearly, I just had to say yes... ;-)

The doctors at duPont believe in Isaiah, and always have.  They never wanted to write his story for him before he was out of my belly and they've allowed Isaiah to sail the ship, be the captain, so to speak.

They've always provided Isaiah with a "team".  For example, although he's seen multiple doctors from the pulmonary department during inpatient stays, he's only followed by Dr H, which offers us the consistency he needs.

I love the nurses, respiratory therapists, x-ray/MRI technicians, PAs,...everyone.  Everyone treats us kindly.  Everyone that we've worked with remembers our names and we are always greeted in the hallways, lobby, and cafeteria by friendly, familiar faces.  I especially love that Isaiah can see his old NICU doctors and PT and that they can see how much progress he's made.

I love that they listen.  I appreciate that Dave and I are respected as being the ones who know Isaiah best.  I am grateful that no one feels like I am stepping on any toes when I ask to be the one to position Isaiah for a surgery, or that when he was in the NICU that we asked to do everything but touch the machines.  I also love that I can ask a question ten times to be sure I understand and they answer with patience, wanting me to understand, not just saying to "trust them".

AI duPont Hospital has helped us help Isaiah since before he was born, so obviously when they asked for us to be a part of last year's radiothon, I had to say yes because I'd love to help duPont.  When they asked us to take photos and video for advertising, I didn't hesitate to say yes.  They are a big reason he is here today.

The photos in this post are just a fraction of what Ben Van Hook and his team from &Barr took.  (They also took video and even Carl hammed it up for them, curling up, belly in the air, on Isaiah's nursery carpet when Isaiah and I read a book.)  

They can be used for anything the marketing department of Nemours chooses to use them for, from brochures for the orthopedic department to a billboard on I-95.  I have friends that have friends in that department, so hopefully they'll let me know if Isaiah's photo/video is pulled for anything. ;-)

And we're not done yet, next week is Pam time again! (Can you believe it?  It's been 8 weeks already?) During/after our treatment, we'll be meeting with someone from the Marketing department who will be interviewing Dave, Isaiah, and I for Perinatal program at Nemours.  I'll be sure to share that interview with you once it's pieced together and live. :)

And if you see us in any Nemours commercials or advertising, let us know!  I feel like Isaiah advertising for them makes him an official "dupont kid" as I've always called him (and hey, they now have an official OI clinic label, which means he can be a "dupont adult" there too! That label gives them the ability to work with OI patients with OI until they are 35...aka Dr B isn't allowed to retired until Isaiah is 36. #kiddingnotkidding).


Wednesday, July 15, 2015

23 Months

Isaiah turned 23 months on Saturday...aka he is one month away from being TWO years old!  (aka way past the time that I should be counting the months.  It's a sickness, ok?)

Also, it's fun to have all the photos documented this way.  I was able to get every month since his first birthday in this high chair, against the blue wall, and that's just fun. I need to get out more.

Isaiah has grown quite a bit this month!  He's back to gaining weight and seriously sizing out of 6 month clothes (to the point that people are noticing and commenting "hey, it looks like this will be the last time he wears that outfit, huh?").  He now has twelve teeth, one of which made us all crazy and the other seemed to sneak into Isaiah's mouth one day.  

He's made huge strides in sitting up.  If only I'd get the guts to let him sit up on his own on the floor...

I wouldn't say he's mastered it but he's hardly wobbling and lasting at least 10 minutes.

Because of his newfound strength, we've upgraded his highchair and taken away the baby attachment:

We were able to keep the back on for now, but even that can go soon.

He went on his first airplane, vacation, trip to Disney World!

Isaiah's vocabulary continues to grow.  He can name most characters from Sesame Street (Grover, Big Bird, Cookie Monster, Ernie, Bert, Abby Cadabby, Oscar), and says trashcan, fish, "blue car", yogurt, egg, carrot, cheese, and "oh cool".  He's also learning to say his version of a few color words: brown, purple, pink, yellow, and red.

Oh, and (no big deal....yeah right!) he got his first wheelchair. ;-)  He is free to move outside of a house and he is thrilled.

Check out the new umbrella for Isaiah's wheelchair!  He's a stink about the sun
and this blocks it wonderfully!  It's by Radio Flyer and meant for their wagons. :)

Honestly, this has been his most amazing month since the holiday season and Dave and I just keep saying how great things are going and how proud we are of Isaiah's progress.  Let's keep this momentum going, shall we?

Monday, July 13, 2015

Isaiah's First Wheelchair

During Isaiah's most recent PT session, Isaiah received his first wheelchair!  We took the time to make adjustments as needed and I learned all of the ins and outs of Isaiah's chair.  

We've spent the last few days getting Isaiah used to his new mode of transportation.

As soon as the belt and harness are clipped, he is rolling.  We just love how quickly he's taken to it.  He's actually getting mad when we go to take him out for rest times, but we want to work him up to using it.  We don't want to wear his muscles out.

We're working on wheelchair proofing the house and I've pulled up Isaiah's throw rug from his bedroom so he can even roll around in there...

It didn't take him long before he was getting into mischief....

Here is a picture of just his chair.  Over the last few days, we have noted a few issues that we'll bring up at our next PT appointment that involves the DME that provided the wheelchair.

I'm sharing this list of issues for fellow OI parents and wheelchair smarties, because I know some of you are thinking "uuuuum, that's not right.". ;-)  

-Isaiah is sitting too far back.  When the chair came, he was sitting perfectly, with his knees at the front of his seat cushion...but he couldn't reach the back wheels!  Hello, glorified stroller.  We immediately pushed him back so that he could reach.  
-You can't bring the wheels any more forward without them hitting the casters.  I plan to ask about smaller wheels, but when looking at the order form, 20" is the smallest I can get of this type of wheel.  Any experienced with the Tilite Twist and know of any other solution?
-The harness is too big.  The DME is working on bringing a smaller one to our next appointment with him from a different type of device.  If it doesn't work, I plan to ask about a chest belt.  He needs that type of support right now but hopefully not for too much longer.
-He can't reach the foot plate.  At all.  Yup, we know.  We're brainstorming a solution for that, but it's not completely a worry as it doesn't seem to bother Isaiah. 
-There's extra parts on there, adding weight.  I know.  We haven't gotten brave enough to take things off just yet, but we'll likely be removing the arm rest brackets (since the arm rests are too tall for Isaiah when they are in place), the wheel push rims (since Isaiah can't reach them and just pushes the tires), and a few other odds and ends.
-Isaiah can't reach the brakes.  He needs extenders, but since he's so young, he wouldn't be able to control them anyway, so that's an issue for when he's older.

That looks like a lot of complaining to me...

But we love the chair!

-We love the head support.  It's perfect for Isaiah to rest his head as he needs it.
-We love that he can reach the wheels and that he does so comfortably.
-We love that there is just one, easily removable push pole so that we can pull it off so there's no obvious way to push him ourselves, giving him the freedom to move on his own.
-The Jay cushion is fantastic.  It's so cushy and wonderful for Isaiah.  And the belt and harness are padded too!
-It has light up casters, which are just adorable.

And best of all, freedom.  Isaiah is free to roll around wherever it's safe...and it is just amazing.

Isaiah has conquered needing oxygen, a 24 hour a day c-pap, a feeding tube, hydrocephalus (conquering in progress, lol), and more, and he's taken on this wheelchair with some major gusto...

Isaiah's First Wheelchair from Vicky Martin on Vimeo.


Friday, July 10, 2015

Dear Isaiah

My dearest Isaiah,

As I write this, it is Wednesday, July 8, 2015.  It's just before 9pm and poor daddy had a long work day and I anticipate his arrival home.  I've just bathed you, read with you, and sang with you.  Your cuddles were extra sweet tonight.  After reading I Love You So..., I held you on my shoulder.  I felt you push off of your legs, trying to burrow into my neck as much as you could while we sat together.  I felt your cheek against mine and you sucked on your paci as you relaxed.

There was a time I felt like I'd never get to hold you like that.
I had worries of mattress pads, tubes and wires everywhere.

I've got your medical equipment all set up, ready for you to go to sleep before I slip it on your face (c-pap) and foot (pulse ox).  I placed you in your crib; you rolled over to your right side like you always do, grabbed a hold of your blankets as I placed them on you and wiggled into your comfy zone.  You hysterically laughed in your crib for a half hour before you went off to dreamland.  You feel it too, don't you?  That excitement?

Our lives are about to change.  Your life is about to change.  Your world is about to open up in such a magnificent way.

Tomorrow your custom wheelchair will arrive.

A wheelchair that doctors didn't believe would be appropriate for you.  They believed that just pushing a chair with your arms would break the bones in your arms.

But your bones are stronger than they think.  You are stronger than they think.

And we proved that thanks to Jack, his family, and friends.

Making his way down the hallway.

A video posted by mrsvickymartin (@mrsvickymartin) on

But now I sit here, happily anticipating you getting into your wheelchair.  You will be free to move where you'd like to move (except, no stairs, kid.), when you'd like to move.  To discover the world your way.

I've been asked how I am feeling about you getting your wheelchair.  If I've "accepted" that you will never crawl, walk, or run...What I have accepted is that your mobility is up to you.  Your body will decide what you can do.  You will decide what you want to push your body to do.  Maybe you'll decide you want to try walking in a year, maybe five years, maybe never.

And I we will support you 100%.

I am feeling excited about your wheelchair.  I am thrilled to see you roll on your own, to move alongside others.  I'm even excited for you to get into things you shouldn't getting into.

You have come such a long way, kiddo.  You made it through a birth that caused between 12-18 fractures (and that was a c-section!).  You've made it through three NICU stays, respiratory failure, needing oxygen, a bi-pap, a c-pap, a feeding tube, fractures at home, two surgeries, a PICU stay, a diagnosis of hydrocephalus...

Despite your obstacles, you smile.  I hope you use this tool to its fullest potential.  I hope it brings you where you want to go and helps you to continue to develop into the strong almost two year old that we love so much.

It's time to show the world that you've got moves kid, go get 'em.

Momma <3


Dear Friends,
We're taking these next few days to get Isaiah comfortably introduced to his wheels.  Update on Monday, full of video and photos of Isaiah on the move! <3  His chair arrived during his PT appointment and after some adjusting from the DME and Isaiah's awesome PT, he is able to get rolling on his own.  He is LOVING it.
Vicky and Dave 

Wednesday, July 8, 2015

Disney Days 9 and 10

Here it is, the last Disney recap post...Dave and I were talking and agreed that I should share some thoughts on the tools we used, tips that worked/didn't work for traveling with our special needs guy, and other final Disney thoughts, but that won't come for at least a week.  We've had BIG exciting things happening with Isaiah on the home front that I am dying to share with you. :) 

Ok, Day 9, the last day in the parks...we started out at Dave's favorite park, Epcot, where we forced Isaiah to take pictures in the sun (because it is just sunny everywhere in Epcot, buddy)

We took a ride on Spaceship Earth...I love that there's a ride inside the Epcot icon!

And then, of course, we visited the character spot once again...
I love when the characters play peek a boo.

After seeing Isaiah's buds, we rode the Finding Nemo ride and checked out the aquarium.  

It was really tough to get pictures inside, but Isaiah loved looking at all the fish, sea turtles, and the dolphin!

After that, we walked to the International Gateway.  That's a second entrance into Epcot through the World Showcase.

The World Showcase was still closed at this point (most of it doesn't open until 11, except one of the restaurants that has a Princess breakfast), which was cool because most of it was empty.  We'd love to walk through World Showcase with no one else there.  It's just beautiful.

Here we are in Canada, eh.

We made our way to the International Gateway, to the resort area. 

We went to the Beach/Yacht Club for a late breakfast at Cape May Cafe.  This is one that I've wanted to do for years, because I think it's fun that the characters are in beachy clothes. :)

The food was great but the service was spectacular.  Our waitress, Lori-Ann, really took wonderful care of us, always stopping in at the most perfect time to snap family pictures with the characters.  Lori-Ann wanted to get to know Isaiah, and we introduced her to him and told her about his OI and hydrocephalus.  Each of the characters were wonderful when they interacted with Isaiah, always so gentle and sweet.  

Isaiah ended up falling asleep in his stroller while we finished our meal....and then something magical happened.  Lori-Ann asked us to go over to a special spot to have a group picture with all of the characters.  

It was so awesome.  And unexpected.  The bummer was that Isaiah was sleepy and not understanding what was going on. (If I could go back in time, I would have left him in his stroller and just taken pictures with him sleeping, because I think that'd be hilarious for when he was older. Hey Isaiah, remember that time you slept through Minnie, Goofy, AND Donald all wanting to take pictures with you??)

It was seriously so cool.  They didn't have to do that.  We were there at the end of breakfast, and each of the characters had already visited with us.  They stayed and waited for Dave and I to finish our meal before getting together as a group.  Lori-Ann didn't have to sit down with us to chat, but she did, and that was really special to us.  

Once we were all done hanging out with Minnie, Goofy, and Donald, we made our way back into Epcot.  We knew Isaiah was tired so we just took a few pictures before meeting our cousins at the Innoventions building.  (Oh hey, did you know we were down the same time as our cousins? How cool is that?  I didn't want to blast their life on the blog, but just have to share this picture moment...oh also, another cousin just started working in Animal Kingdom and we got to see him too! It was awesome seeing family in our happy place.)

Not sure if you know this, but if you have the Disney Visa, be sure to bring it with you when you go to Epcot on your Disney World trips. :)  They have this special meet and greet area where you can get your picture taken with 2+ characters from the Fab 5 and you can get a free 5x7 of your favorite picture from the meet and greet.  (It usually starts at 1pm, which was tough for us with Isaiah's nap schedule.)  Obviously, we got to meet Minnie and Pluto this time, but you never know who you'll get to meet until you go behind the curtain!

That group photo is how we ended our Epcot morning.  We made our way back to the resort and rested up for a rainy last night.

Darn that rain.  The thing is, I can't complain too much because it really wasn't bad at all this year.  Storms happened but they were minimal...the bummer is that we had put off some of my most anticipated rides until our last night....
and then couldn't do them.  Whomp whomp.

We wanted to ride the train back to New Fantasyland, but it wasn't running because it was storming.  The positive is that the wonderful cast member still let us go up by the train to take a picture!

So, Isaiah's first ride on the train will have to wait for another trip.

He'll also have to wait to ride Jungle Cruise and Dumbo, because it was just raining too hard.  We also missed Peter Pan.  We had gotten a fast pass for that but missed it because we were late getting to Magic Kingdom and the standby line was just way too long.  (We did have the DAS card, but we didn't use it because the wait was just so long, and we didn't think we'd be in the park that long!...I'll explain the DAS in my follow up post I mentioned earlier.) ;-)

So we sucked it up, I got one last look at that beautiful castle, and we went to see Mickey one last time...

I had forgotten to use our "1st Character Memory" sign the first time we met Mickey,
so I pulled it out on our last interaction since Mickey was the first character Isaiah met in person.

After we saw Mickey, we headed back to our resort for the last time.  We contemplated sticking it out and waiting to watch the fireworks, but we thought they'd be a wash out.  They almost were, but they ended up going off a half hour late instead....Isaiah was practically asleep, but we opened our room curtain behind him and watched from the comfort of our room, with the music playing on the TV.

Isn't that amazing?  And yes, I took video too.  

It was a great way to end our last night.

In the morning, we headed to Chef Mickey's in the Contemporary, for a final Disney character meal (our last Mickey waffle for 2015 ::sniff sniff::).

Everyone was so sweet!  Isaiah was beyond excited and loving everyone coming up to him.

A few of the characters came back a few extra times for more hugs and nose squeezes.  It was by far Isaiah's favorite meal. 

Once we were done at breakfast, we went back to our room at Bay Lake, packed up and dropped our suitcases off to the Resort Airline Checkin.  (They only work with certain airlines, and it is such a convenience to not have to worry about bringing our resort with us to the airport.)  After that, we made a quick stop at Wilderness Lodge to meet up with a friend before heading to the airport.

Our flight was a bit delayed but we were in the air by 4:15 that afternoon.  Isaiah did great on the flight, glued to his ipad.  We were back to our car by 7pm, and then dealt with a bit of car trouble on the way home.

Besides a shaky beginning and ending (broken stroller to start, bum car to finish), it was a seriously a magical trip.  I had a lot of anxiety going into it, but all of our over-thinking and preparing really paid off.  We felt blessed that we got through our 10 day vacation fracture-free and avoided the Nemours Hospital down in Orlando this trip. ;-)

I hope you enjoyed my recap of our trip and that I convinced you to book a trip for yourself.  :-P  We totally have TWO trips planned for next year! A family vacation AND the OI conference will be held down there in 2016!  I am counting down to seeing our OI buds from across the nation down in our favorite place. <3  Ahhh can't wait!