Longwood Gardens/Wheelchair Life

Friday night, Isaiah and I went on an impromptu trip to Longwood Gardens, it's acres of gardens, fountains, and more.  We have a membership that Isaiah's aunt and grandparents go for us for Isaiah's recent birthday.  The weather was just perfect for a night out and so was Isaiah...he had slept in on Friday, and had a long late nap in the afternoon.

We met friends and enjoyed the summer Nightscape program, full of colorful fountain shows and light programs along the paths.

We were there for about two and a half hours, most of which Isaiah spent in his chair with light up wheels....the little casters in the front light up if you go a certain speed, and man, they were a hit!  So many "woah, cool stroller!" (lol) "mom, I want one of those!" and "man kiddo, those lights/that wheelchair are/is so cool!" 

This was our first positive outing with the wheelchair that we've had in a while...

So, you know how I went on a break from blogging and I have yet to get back to my old schedule?  Well, that's because we had a handful of pretty negative experiences while out with the wheelchair, a few seriously painful ones within one weekend, and I let them bother me and make me angry.

I keep it it real here, but at the same time, I don't want to be whiney.  I don't want readers to feel like I am a giant complainy pants about our life because I am so grateful for our life.  I don't want Isaiah to look back on this blog and ever think I see him or aspects of his life as a burden.  Sometimes things are difficult and scary, but those things are small in comparison to the aspects of our life that are wonderful.

But I went through a few weeks of having trouble sharing anything, because my brain would go back to that weekend...where an adult woman pointed to Isaiah pushing himself in his wheelchair and saying "OH MY GAWD!! LOOK AT THAAAAAT!" while slamming her friend in the arm and pointing at Isaiah while shoving an ice cream cone into her face.... where then, not 20 minutes later, a little boy used the words scary and weird to describe Isaiah.

I think I wanted to share what happened with you, but I didn't because I was so bitter about it.  I went into a negative place.   I was unhappy with how I handled things (or didn't handle things) and I just didn't know what to say.  I felt I didn't know how to advocate for Isaiah, and I was so frustrated...

That?  She called my baby a "that".  The common sense part of my brain knew she was just surprised at seeing "a tiny baby" pushing a wheelchair, but the momma bear side of me fell apart and shook and was appalled at her reaction... and then it was like a one two punch when that little boy used such unkind words....yes, I know he was a child, but hearing those words to describe my son was painful. 

I know I can't control how the world responds to Isaiah, but I should know how to control my response to situations like these, and I was just so very disappointed in myself because I was just silent/angry (asking to speak to the little boy's mother...yup).

I am normally a happy person, who jokes and sarcastically responds to things...and in my dreams, when these situations arise, I'd reply that way, educating along the way as well, hoping to help the world accept different, everyone walking away feeling positive....and teaching Isaiah to respond similarly.

But when it involves Isaiah, I freeze!  I don't want to say the wrong thing.  I feel defensive and can't get past it.  I get hot in the face, my mind gets fuzzy, tears well up in my eyes, and geezlaweez!

So, that happened.  Maybe now that I shared it, I can get back to life as usual?  I know we are just beginning this journey and that I need to put my big girl panties on about it all....this is all such a new experience...and while we try to embrace things and live positively....sometimes it's all easier said than done.

We'll keep trying though; at some point, we're bound to get it right, right? It's very important to me that I figure out how to have a positive gut reaction, because I know Isaiah is listening to everything.

That was evident when he said "oh crap" when he dropped his pacifier on Saturday.  Yup. Time for everyone to stick with "ut oh" because that's much cuter coming out of my two year old's mouth... ;-)

Bye Bye Cpap!

Earlier this week, I emailed Isaiah's pulmonary doctor to let him know of some changes to our daily routine that have occurred.

You see, at night, Isaiah is supposed to sleep with a C-PAP to help with his mild obstructive sleep apnea and he's also supposed to sleep with a pulse ox so we can monitor his oxygen saturations.  His C-PAP wearing was not consistent, but we always put the pulse ox on him.  For anyone that doesn't know what a pulse ox is, it's a monitor, a bit bigger than an alarm clock, that shows Isaiah's heart rate and oxygen levels.  It connects to Isaiah with a sticker on a very long cord.  Isaiah's oxygen levels have been healthy for a long time.  (At his last sleep study, his oxygen stayed in the 90s the entire time, never dipping below 91, and that was only once.)

Honestly, I was basically addicted to it.  It used to help me sleep, knowing that if something happened to Isaiah, it'd beep to wake us and alert us.  I'd say I wanted it until he was 30....and I was only sort of kidding.  But then it started beeping constantly all night...and when we went to check on him, he was fine, it was beeping because he's moved and the sticker fell off.

The pulse ox monitor is on the plastic drawers next to Isaiah's crib.

And he sure did move.  He'd have spun a 180 in his crib.  He'd be at the opposite end of the crib than we put him in (kid used to stay put!).  He'd be chewing on that cord for the pulse ox.  It'd be wrapped around his legs or entire body from all of his movement.

A pulse ox isn't meant to be on someone who is moving.  It can't read accurately.  None of us were sleeping because the beeping was waking all of us up.  So, after a few new tricks we'd learned from others to keep the pulse ox on safely failed, we made the executive decision to just stop using it.  It became a danger.  His chewing on it and me afraid he'd get electrocuted (likely an exaggerated worry) and it's getting wrapped around him had us very worried it'd get caught and cause a fracture overnight when he would move in his sleep.

You can see the pulse ox cord hanging from the side of the crib in this picture.

We've had him completely free of his machinery now for a few weeks...I avoided emailing his doctor because this was not part of the plan....but I knew I had to, so I emailed him.  He replied back rather quickly agreeing that we have to weigh the potential risks with the benefits of the monitor.

And then we got a phone call from the oxygen company saying they received an order to pick up one of Isaiah's c-pap machines from the house.  We have two- one for travel and one that stays home...

I kicked my heels.  Yes, I think it is time to send one back!  Isaiah has another sleep study coming up in a few weeks.  Hopefully it will solidify how we feel; this chapter of Isaiah's life is over.  For now, his apnea is resolved.  We know that he will likely need the cpap again in the future....I know of a number of adults with severe OI that sleep with a cpap.  

But for now?

We will still have one in the house if Isaiah were to need it (if he were to get sick and it affect his breathing).  We still have the pulse ox too...they are just put away for now...and hopefully will soon be sent back to the oxygen company too. :)

Community Day

Hi everyone! I'm starting to maybe feel the spark to post again?  Maybe....

This weekend was beautiful!  I can't believe it's August.  Usually it's so hot but this August has been just dreamy....worries me for this winter but for now we'll enjoy the cool summer days- Isaiah sure loves them!

Random fact: We moved into our house four years ago.  A weekend after we moved in, there were fighter jets, helicopters, and cargo planes flying randomly over our house for three days.  We had no idea what was going on until our neighbor told us about Community Days at the local airport.  Apparently one weekend every summer, the local airport has an event to welcome everyone to explore the world of aviation.

Last year, Isaiah was just too young...but this year...armed with his independence thanks to his wheelchair, Isaiah was able to enjoy his very first Community Days experience.

We went at gate opening and enjoyed checking out the all of the air crafts that were on display.

There was ample opportunity to learn about the history of many of the planes, talk to pilots, enjoy food carts, and even check out various set ups of war camps.

Isaiah loved watching the parade of planes...where one plane at a time would roll by...

When we first decided we wanted to take Isaiah, I reached out to our support group out of concern for Isaiah's ears when it came to the engines of the airplanes.  I honestly thought it was going to be super loud!  Some say that because of the fragility of severe OI bones, very loud noises can fracture the tiny bones in the ears, causing hearing loss at a later age....obviously I didn't want to cause those fractures by taking him to this event, but I also didn't want to skip it when I knew he'd enjoy it. (Isaiah is all about "air pains")....I really don't want to let OI rule his life, you know?  It's just one aspect of it and with proper precautions he can adapt and enjoy everything he wants to....that's my goal anyway. ;-)

Anyway, I ordered a pair of Baby Banz for kids, tried them on Isaiah throughout the week and was confident he'd be ok wearing them if it was noisy....but guess what?  It wasn't noisy at all!  The area was open and large, only one plane was running at a time, and we were far enough away that it was just fine.

This was a wonderful event to bring Isaiah to.  It was educational, fun, and easy on the wallet....yup, it may have to be a yearly event for us. :)

Birthday Recap

Hi everyone!  I can't believe Isaiah's party was over a week ago!  We really lucked out again weather-wise and it was just a beautiful day.

The theme this year was to one of Isaiah's favorite books, Little Blue Truck.  I had lots of fun making decorations and turning the house blue...not that we needed that much extra since everything in our house is blue. (ha)

We planned almost every detail, except the cake, that was a surprise.  Did you see that amazing cake?

I had recently found out about an organization called Icing Smiles.  It's a non-profit organization that provides amazing custom cakes to families impacted by the critical illness of a child.  I literally found out about it four weeks before Isaiah's party and decided to apply.  Luckily, with a doctor's signature, they accepted Isaiah and quickly paired us with a local baker.  I filled out a questionnaire about the theme of the party, colors, and preferred cake flavors, but that was it.  The rest was up to the baker.

Nikki, from Ruby Red Bake Shop, did not disappoint.  She went so above and beyond what we expected!  The cake was beautiful, was the talk of the party, and was so super delicious.

Thank you so much Nikki and everyone at Icing Smiles, for making Isaiah's birthday extra magical! :)

Here's a video of everyone singing happy birthday to the birthday boy...

We were very proud of him for not crying hysterically during/after the song (we had been working on that for a few weeks.  Adding in "cha cha cha" avoided the crying during our practice runs, thus my crazy "cha cha chas").  Next year he'll rock blowing his own candles out. ;-)

Along with cake fun, we had a water table, bubbles, and a few crafts for the kids...I just stunk at taking pictures of it all!

Thankfully, my friend Kate brought her awesome camera and set it up with the pinterest-inspired photo op I made...

Yup.  I'm a nerd.  I will avoid embarrassing everyone by not posting all of the pictures of our friends and family posing with chicken beaks and pig noses...mostly because I forgot to ask for permission to post their pictures. ;-)

Once the party was over, Isaiah passed out asleep for an hour but then woke up ready to go.  It was 9 o'clock at night.  Yup.  Instead of forcing him to stay in his crib, we brought him out to the living room and let him open his presents.

He was so grateful and loved everything!  It was so nice to see him interested in opening his gifts.  Last year it was our job so it was really fun to see him open something and light up.

It's good we were able to fit in present-opening that night, because the next day involved quite the road trip!  Dave has to travel for work from time to time, and it was a bummer when we realized that he'd have to travel during Isaiah's birthday week, completely missing Isaiah's actual birthday...that is until Isaiah and I invited ourselves along. ;-)

Dave had to work during the day, but was able to spend time with us in the evenings.  We spent our days hanging in the hotel, exploring the local area (um, HELLO HOBBY LOBBY), and meeting long distance friends.  We got to meet some of the family members of one amazing kiddo, Zane, and the founder of Go Shout Love and her sweet husband.  We also got to meet a few of Dave's coworkers and were surprised by them with a cake and gifts for Isaiah.  

Isaiah is one loved boy.  We want to thank everyone for all of the birthday love you all spread his way, whether you were with him in person or in spirit, we felt your love and blessings.  Thank you <3

Isaiah is TWO

Dear Isaiah,

Today, we celebrate.  Today, at 6:49 in the morning, you officially turned TWO years old!   I can't help but lay awake at that time, thinking back like it was just yesterday, remembering hearing your cry from the warming room as I laid yearning to hold you in my arms, as the doctor silenced the bustling operating room so that we could hear you.

Joy.  I felt joy.  

I didn't think you'd be able to cry, Isaiah; I had been warned that you'd be in so much pain from all of your ribs breaking from your expanding lungs that you'd be unable to cry.  

I remember living in the moment, soaking in every second, because I had the word lethal still in my head and I was so scared for you.  

But look at you.

That lethal diagnosis wasn't right in your case, and I am grateful every day. You proved those predictions wrong, buddy, and you continue to defy the odds.

We've been through some scary stuff the last two years: feeding tubes, respiratory failure, breathing machines, fractures, hydrocephalus, MRIs, X-Rays, surgeries....but you grow stronger, despite your challenges.  You continue to thrive and grow and do YOU.

Keep going baby.

Happy Birthday, we love you, Isaiah!

Love,

Momma and Daddy <3

___________

Hi everyone, sorry for the break I've taken from the blog...I'll explain it at some point, once I can find the words.  We're actually away right now, with Dave for work so that we can be together as a family for Isaiah's birthday. <3 I'm hoping to sit down and write about Isaiah's birthday party/cake for Friday. And hopefully I can get past whatever writer's block I have to post again. <3

Short Break

Hi everyone, I'm going to take a break from the blog for a bit.  Things haven been going well with Isaiah but there's really nothing new to share :)

I'll check in next week since he'll be turning TWO years old! :)

Thanks so much for all your love, support, and prayers. <3