Pam time

Sorry for the lack of blog updating, we've been busier than our normal. 

Isaiah and I are down in Delaware, spending our afternoons and nights at the Ronald McDonald House and mornings over at DuPont for his pamidronate treatment. We go for treatment about every 8 weeks.  For Isaiah, it's a three-four hour process each day for three days.  Yesterday was the first day, typically the toughest because it's when they weigh him, poke at him, and access his port (basically like an IV, but the needle goes into a port that isaiah has surgically placed at 6 months).  Today was supposed to be the easy day since he was already accessed. 

It started out great, but then when he was hanging out in his stroller, he had a big sneeze sneak up on him...I'm confident he broke something, likely a rib.  Because of Isaiah's upcoming surgery, they didn't want to give motrin bc that surgery is getting close so they first gave Tylenol to see if that would work. 

Ever break a bone? Did Tylenol help?

Doubtful.

I know from past breaks that Tylenol doesn't do a thing for Isaiah, that Motrin/Advil is the only over the counter medicine that can help...but since it's a blood thinner, I understood not wanting to go that route right away.  But two hours after the Tylenol and Isaiah was still a mess.  He would only stop crying on my shoulder. When Dr B came by, he saw he was still in pain and called Isaiah's neurosurgeon, Dr C, and he gave the ok to give Motrin. 20 min later Isaiah was passed out asleep- in the bed (instead of on my shoulder), and he was out for an hour and a half.  He ended up sleeping through his treatment finishing for the day, and thankfully the nurses let us stay and let Isaiah wake on his own since they didn't need the bed so he was able to get a good consistent sleep.  We're grateful for their kindness there for sure. 

He woke up much more like himself.  Smiling once we were on the move. Hungry.  Happy to see Mickey again (I had put Mickey on the iPad soon after he sneezed and he wouldn't calm down.  That right there is an indicator of his pain. If mickey can't calm him, it's bad.).  

Peanut butter ON crackers? My two favorite foods in the whole wide world! Mind-blowingly good, momma, you're a genius. 

We had an appointment with Dr C before heading back to the McDonald house for the night.  He went over some of my questions about the surgery that I'll share once we're home and I've had some rest. For now, we have another day of Pam to get through and a sleep study before that can happen....here's hoping for quick healing for my big boy...

Exhaustion

Goodness, this week has flown by.  On Sunday, Isaiah and I will head to DE for a very busy week.  He has his bimonthly Pamidronate treatment (that he gets bimonthly to help strengthen his bones).  We stay at the McDonald House but head over to the hospital for a few hours each day for three days for that.  On top of that, we have a consult with Isaiah's neurosurgeon to discuss some of my questions about the upcoming surgery to help alleviate his hydrocephalus.  And to really make sure we're exhausted (mind you, I'm the one who scheduled these things), we'll be spending the night together at the hospital before heading home to have Isaiah's 3rd sleep study.  BAH. I very much dislike sleep studies.

Isaiah clearly does too. :-P

Speaking of things I dislike...One thing I loathe about "Pam trips" is the middle of the night bottle. Having to carry Isaiah and a full bottle to the kitchen of the McDonald House to warm it without making noise is a task...not to mention that I have to make sure I'm fully awake so that I am careful with Isaiah.  Struggle.  But the last....two weeks?...Isaiah had been sleeping through the night.  I am talking 7pm until at least 7am.  It had been glorious...but then the last few days this child has decided to wake up before the sun...5am wake ups here...and I refuse to give him a bottle.  In a way I regret it because we're all tired...but he's a few months shy of two years old, we can't be doing that dance anymore, (and waaah, I really am hoping to avoid it this pam trip) and I am will not back down but I am so tired...

Guys, we're pooped.  So if you've noticed my posts have been kind of whiney (like today's haha), that's why.  Let's hope Isaiah decides to sleep in tonight since tomorrow is Saturday and all three of us could sleep in since it's not a work day for Dave (because he's had some long days this week, and I bet he's feeling it too).  And let's hope a girls' day with my friends/old roommates from college helps rejuvenate me so I am ready for this tough week ahead.  #1708forlife

Momma's Dentist Appointment

Yesterday I had a dentist appointment scheduled for a cleaning...I had honestly forgotten about it until I got the reminder call on Friday.  Honestly, I've been ignoring many things for myself, but my teeth are a priority for me and I won't let myself put them on the back burner of my life right now.

Dave had to work and I didn't want to bug anyone for what should be a quick appointment, but I had to preplan if I was going to bring Isaiah.  I actually brought him with me 6 months ago and it could have gone better.  He saw the scrubs and then the mask on my dentist and lost it.  He freaked out every time they went into my mouth with the polisher, a mirror, whatever.  

It's clear that I developed a new habit soon after Isaiah was born; I clench my jaw.  I do it while I sleep and I do it while awake sometimes without even realizing it... until I start to hurt.  I have a guard and it's something I'm working on.  It's just one of the ways that my body deals with my worries and stress but it comes at a cost if I am not on top of it.

Six months ago, we were trying to hurry through the appointment and thanks to my clenching, one of my fillings fell apart while the hygienist was flossing back there (it was honestly great timing; better to happen there than at 10 at night when I'm flossing before bed).  I didn't post about this then because it 1) embarrassed the daylights out of me and 2) I was just realizing the effect of clenching.  

My dentist is wonderful and she was willing to fix it right then and there....but when she was added to the party, Isaiah's meltdown went way loud, he turned red, and although I could ignore him....it wasn't fair to anyone else to expect them to so we had to reschedule.  

Here is Isaiah in the parking lot before my appointment yesterday....holding his head up in the stroller for the first time ever.  Go Isaiah! I have to make sure to get his butt back farther so he can sit all the way up.

Anyways, here we are six months later.  He's six months older .....and even more afraid of scrubs and masks.  Sigh.  I blame a winter full of vaccinations and extra pokes to his port for the MRI and such.

I needed a plan.  Isaiah loves Mickey, he loves to read, and he loves that I-Pad.  I posted to my personal Facebook asking for suggestions for apps and I received lots of fantastic suggestions (Fisher Price has some great ones and the Endless set is also fantastic. FYI).  I also spent a few dollars on some of Isaiah's favorite episodes of Mickey Mouse Clubhouse.  Since they don't have internet for the patients at the office, I had to make sure I had something that worked offline.

When we got there, a few of the amazing staff members came over to say hi to Isaiah (I love my dentist office.  Here's a backstory: I had my teeth cleaned 2 days before Isaiah was born and I had told them what was expected....when we stopped home one day to check on Carl/do laundry/go through the mail, there was a card from them.  How many dentists send you a card saying they are thinking of and praying for you?), and he started to cry when he saw the scrubs.  BOO.

I had been spending time rigging up the I-Pad so that it was close to him and secured onto the stroller (We didn't need a broken femur because he dropped it on himself) so we turned it on and he played with his Fisher Price app while we waited.

Not a bad set-up, eh?  Just give me a stroller, some memory foam, ribbon, baby rings, and an i-pad and we're good to go.  (Adapting sometimes means getting creative, and if we teach Isaiah to get creative now, he'll hopefully always find a way to what he needs/wants.)

This may not be the best parenting but this is me trying to get through something that scares Isaiah...and since I'd be pre-occupied, Isaiah had to be 100% on his own.  For the last few days, I had been repeatedly saying a few things... "We're going to the dentist soon....This is for momma, not Isaiah...You won't get any boo boos and neither will momma...This will be/is fun!...It's to keep momma's teeth healthy." I showed him an episode of Doc McStuffins about the dentist.  We talked about it while we brushed our teeth....but Isaiah doesn't quite get it yet.

As much as I wanted Isaiah observing my appointment so he knew that it was ok, I knew he couldn't do that because he didn't understand and he associated it with getting poked and he'd shut down and freak out and I didn't want to be in the same boat that we were six months ago. 

I was so nervous for this appointment but once they were ready for me, I put Isaiah in the corner so he could see me and opened a new app for him.  At first he was ok, until he saw the hygienist put the paper bib on me...so I quickly turned on Isaiah's favorite episode of Mickey that I had downloaded earlier in the day.  We almost had him happy, but he kept turning with bug eyes at what we were doing and starting to cry....so this happened...

And we got through the rest of the appointment with zero tears.  Since Isaiah couldn't see what was going on, he was fine.  We could hear him giggle every so often at Mickey so it sounded like he agreed that this was the way to go.

How in the world did moms do this before such technology? Part of me feels like I could have done better, that I should get strict, that what if someone reacts like this lady when they hear Isaiah freaking out because he's scared...and I worry about how Isaiah will act when he's older.  But in reality, many moms likely get a babysitter or do the same thing nowadays.  Most moms don't take their babies/toddlers to get needle after needle and then expect them understand that this appointment is different and not for them.  

I'm doing what is right for us and that's all that matters.

Scooty Mornings

It's officially spring time in our neck of the woods and for that, we're grateful.  It's time for long walks, getting the garden ready, grilling, and bubbles outside of the bathtub. :)

It's still a little chilly, but Isaiah is loving being outside.  He loves listening to the dogs bark, birds chirp, and cars go "voom".

Inside the house, Isaiah is spending a bit more time in his Scooot.  As he's getting used to it, we're still sticking to just three times a day, but we're extending the amount of time he gets to hang and enjoy it.

He's rocking scooting himself down the hallway from his bedroom in the morning and after nap; he made record time just this morning going from the end of the hall to the kitchen entryway.

In the mornings, his goal is always to get around that little black table (whose days are numbered, I suppose.  It's finally time to child-proof because he loves stopping and grabbing at the table and the decorations on the bottom of it.  I should probably get some outlet covered while I am at it since he's always grabbing at the walls....) to get to this toy...

Until Isaiah gets distracted by Mickey singing.  Once he decides he wants to watch Mickey, Dave or I help him turn around and he wheels over to this other little table.

We did adapt it by clicking one of the legs off, but Isaiah fits perfectly underneath of it.  We switch which leg is taken off to keep it interesting.

Later in the morning, when it's time for snack, Isaiah goes back into his Scooot and sits at his little adjustable table and eats.

You need two hands for Veggie Cheese Puffs.  You can't chance dropping their deliciousness.

The Scooot has brought a welcome change into our household.  In a few days I plan to add a fourth time for Isaiah to sit in his Scooot, to push himself over to the table for a meal.

This week we are pretty busy (as we prepare for a busier one next week).  Isaiah will be coming with me to the dentist for a cleaning (let's hope it goes better than 6 months ago when he flipped his lid when he saw the masks), we have our 6 month meeting with Early Intervention, water therapy...not to mention I need to start packing for DuPont because it's almost time for treatment again already, plus a sleep study (Lord help me), and our consult with the surgeon to help relieve Isaiah's hydrocephalus...

March sure is flying by.  It'll be Easter before we know it!

Wheelchair 101

It's been one week yesterday that Isaiah has had two new important tools in this house.  Two tools that are helping him to get moving.  One is just a demo (meaning not ours to keep, just to try out), is too big, but is giving us an idea of what we'd like/wouldn't like for Isaiah's official wheelchair (when we decide to order it...we canceled this week's appt to do that).  The other tool is one that we all love, Isaiah's Scooot, and Isaiah is on the move in this baby. 

Did you make the hallway longer, momma?  It seems longer now.

I posted a similar picture as above to my instagram (you should be able to see it on the right side of this blog page if you're on a computer).  We spoke to Isaiah's PT for suggestions on how long to have Isaiah in his chair and how to get him moving.  She suggested just 10-20 min at first, 3 times a day, and trying to incorporate routines...I thought about it, and decided that instead of carrying Isaiah out of his room after each sleep, that he'd wheel himself instead.  Given he had just rested, I thought it would be the best time.  So far he's done this twice, yesterday after nap and this morning....and it's glorious.  He's so happy and excited to get to his destination.  He stalls at the bathroom announcing "bu" for bubbles (we always blow bubbles during his baths), but he's rocking this new routine.  He keeps stopping to touch the walls and discover his house in a new way, by himself.

It's amazing.

_________

These tools are teaching Isaiah how to move and they are teaching us what's working for Isaiah.  The wheelchair world is a whole new world.  Exciting, but overwhelming.  With a wheelchair comes all new vocabulary.  It's vocabulary that I am already getting used to (I think), but I don't want you to get lost when I use it in future posts, so today I am going to share it.  There will be a test on Monday so you better study. ;-) JK!  This post may bore many of you, sorry, but I think it will be a helpful reference to us and maybe even to others that will start out on this journey as well.

Shopping for a wheelchair is like shopping for a car.  First, of all, one thing you have to decide when car shopping is...do you want to drive a stick or an automatic?  

In the wheelchair world, you have a manual chair, which is a chair that the user propels/pushes themselves by working the wheels, and there is a power chair, a chair with a motor that the user can move using a joystick (to be honest, I don't know enough about power chairs and am just calling it a joystick as it's how I observe it. Ask me again in 3 years and I'll know the proper term for it. ha) 

We're working on getting Isaiah a manual chair.

Another thing you have to narrow down when shopping for a car is the make...like do you want a Honda? Ford? Toyota? Hyundai? Kia? I could go on, because there's so many to choose from and each one has a number of models to choose from and each one has its own features.....just like when searching for a wheelchair.  It's wonderful that they are so many to choose from, but it can easily get overwhelming.

Thanks to other experienced OI families, we've been able to quickly narrow our list down basically to three chairs, give or take (ok, 5 chairs, but the other two are maybe off the list so I'm not posting about them.

I imagine you understand the first 4 rows of info in my little comparison chart....but if you're anything like me when I was first learning, you're thinking what the whaaaaaaat about those last two.

When we met with the wheelchair clinic at DuPont, they told us about reverse configuration.  That (and camber) is in reference to the wheel placement; reverse configuration literally means the wheels are reversed.  Usually when you see someone in a wheelchair, if you look you'll notice that the big wheels the user pushes are in the back and the little wheels, called casters, are in the front.  

Like this, (thanks internet):

We thought we'd want reverse configuration, because it makes it very easy for Isaiah to reach the wheels (which is important with his arm length), but after talking to other parents, it really restricts turning.  Going over even the littlest bump is very difficult too.  We'll be sure to have anti-tippers in the front (so that the chair doesn't tip forward), but they won't help Isaiah get over bumps any easier.  Bumps don't matter in our house as luckily our main floor is mostly all hardwood and there are zero transitions, but they matter if we visit other people's houses, stores, go out on concrete, etc.  Also, reverse configuration means no popping wheelies; it's not possible.  I'm ok with that, but Isaiah may not be. ;-)

Another wheel term is camber.  Camber is the angle at which the wheels are attached to the chair...This awesome picture should help you envision it.

Not only will camber make it easier for Isaiah to push on a slight angle, but it'll make the tops of the wheels closer to him, making it easier for him to reach those wheels.

We have to figure out what degree of camber would be best for Isaiah, meaning how angled does he need the wheels? How angled can they go? Each chair offers more camber than others.

Plus we have to know what size wheels to get.

Beyond the wheels, weight is extremely important in finding a chair that's right for Isaiah.  He needs the lightest chair possible.  Isaiah's chair will likely be heavier than all of the weights listed in my chart because we know we have to add some supports, and with added supports, adds weight.  The weight listed in the charts is just in reference to the frames themselves...it excludes the weight of the cushion, the head support, the wheels, the casters, the footplates, the anti tippers, the stroller pole (we'd have that in case he breaks his arm and can't push himself)...and Isaiah himself (and anything I forgot to list! lol)!  You have to remember that Isaiah will be pushing the weight of the chair and the weight of his own body.

We don't want him overworking those bones, muscles, or joints.  If he overworks them now, what condition will they be in when he's 20 years old?  All this comes into our minds when trying to decide what's best.

Thankfully we have the help of Isaiah's PT, fellow OI parents, and the wheelchair rep, but just typing all of this makes my ears red. ha

The wheelchair rep that brought us Isaiah's demo wheelchair is working on finding us demos of the specific chairs we've listed.  He does work with TiLite and Quickie, but not Panthera, so I am trying a new avenue that may offer that chair....wish me luck! I'll update on this exhilarating topic as I have updates.

The good thing is that all of this has me completely distracted from Isaiah's surgery.  It's inching closer and closer but I am too focused on the wheelchair search to let it worry me.  :)

Happy Friday!

Isaiah's Feel Better Friend

Back in January, a kind woman posted a comment to Isaiah's Facebook page letting us know about an organization that she volunteers for: Feel Better Friends.  Volunteers from around the world create customized crocheted dolls for children with serious health issues who feel may "different".

I checked out the website, shared it with a few of my support groups, and requested a doll for Isaiah.

We were quickly introduced to Isaiah's volunteer crafter, Terri-Lee, via email.  Terri-Lee lives in Australia.  She is a master crafter as she crafted a Mini-Isaiah and sent him off in just a few days!

Terri-Lee even made Mini Isaiah's arms and legs shorter at my request. :)

Mini Isaiah decided to tour the world...or hide in a post office somewhere...as it took him some time to get to our house from the other side of the world.

Actually, we had thought he was lost forever, and Terri-Lee let the administrators of Feel Better Friends know that he was missing, so they assigned us with another sweet volunteer, Bobbi, who was ready to create a new doll for Isaiah.

A few days after she and I emailed, Mini-Isaiah appeared in our mailbox. (and I immediately emailed Feel Better Friends and Terri-Lee.

Mini Isaiah was worth the wait.  Isaiah thinks he's hilarious!  He loves holding his hand and rubbing his hair.  And guys, he even has a tail just like Isaiah's Donald Duck halloween costume (that I of course had to pull out for this photo opportunity).

Isn't this just the coolest?  If you know a child facing a major health condition that could use a pick me up, please share Feel Better Friends with their parent(s).  They are a wonderful organization spreading love and happiness through talented, loving volunteers.

Thank you Terri-Lee and FBF for Isaiah's Feel Better Friend.

Jack's Birthday Buddy

Warning: this post has a million pictures. :)

A little before Thanksgiving, I received a message from a friend of some friends; her name is Lisa.

Lisa and her husband have two beautiful kids, one of which, Jack, has a birthday just days after Christmas.  Last year, for Jack's first birthday, Lisa and her husband asked a friend with a child with Cerebral Palsy to be Jack's "Birthday Buddy".  Instead of Jack's party guests giving him gifts for his birthday, they made a donation in honor of Jack's Birthday Buddy.  Those donations went toward getting a piece of medical equipment for Jack's Birthday Buddy.

For Jack's second birthday, Lisa asked if Isaiah could be Jack's Birthday Buddy.  We were surprised and grateful that they thought of us and said yes.

Thanks to Jack, his family and friends, and their generosity, Isaiah is now the proud owner of the Scooot (that's 3 O's,) by Firefly.  

For Jack's birthday, they have given Isaiah a gift, they have given us a gift, the gift of mobility.

Lisa has the patience of a saint, because I changed my mind, changed my mind, and changed my mind again.  I wanted to be sure whatever piece of equipment that we chose for Isaiah would work for him.  I was so afraid that what we chose wouldn't work and that it would have been wasteful.   

But look at him, he naturally put his hands right on the wheels!

I asked Lisa to wait for Isaiah's Wheelchair Clinic appointment, I asked her to wait to let me talk with Isaiah's PT.  I asked her to wait and wait and wait some more.  I was afraid this wouldn't be the right fit for Isaiah.  And then when I finally said "ok, let's do it!", it was out of stock. So Lisa had to wait some more.  Seriously. patience. of. a. saint.

I swear she was on it.  The moment that the 3 in 1 Scooot became available, she jumped on it.  It got here in less than a week! And then I opened the box and found out that some of the screws were missing.

More waiting.

As it sat in our house, waiting for a new bag of screws to be sent from across the Atlantic (Firefly is based out of Northern Ireland), I grew nervous that it'd be too big for Isaiah to use.

Thankfully I was wrong.  I think though, that we made the right choice.

It did need some adapting.  Isaiah's feet fell into spots that made me nervous.  He also needed a bit of a harness; without it, he was too nervous to push the wheels because his torso/head support isn't 100%.

Isaiah's PT and some OI moms came to the rescue with some creative thinking.

His PT added the pillow from his Boppy chair for some cushion as the back is made of a hard plastic; she added a book as well for a bit of a taller support.  I added a burp cloth on each side and so his feet didn't fall into the holes.  I grabbed a scarf (thanks to Rachel's suggestion!) and tied that around him as a little DIY harness.  

Isaiah does need to rest his head sometimes still though, so I needed a higher support in the back.  I also decided to remove the front footrest since Isaiah's feet can't reach it yet (should be great in the future, especially when Isaiah has his rodding surgery and is casted) and it's removal lightens the weight of the whole thing:

The taller book has a padded cover and is titled "On the Go". Could that be more perfect??

We did some experimenting without Isaiah in the chair to make sure we truly thought it was safe for him.  I am sure there may be some Firefly makers shaking their heads at our adaptations...but with those additions, it quickly became obvious to us that this is something that will be ideal for Isaiah around the house. 

Carl is not too sure.

 As time goes on and Isaiah gets used to the feeling of moving himself, we know we'll be able to pull our additions from his Scooot.

Isaiah LOVES it.  He can go backwards like a champ, but is still working on pushing forward.

It's a whole new world for him, though.

This.  This picture gives me butterflies. Look at him!  Playing with the magnets on the fridge just like any other one and half year old.

Isaiah will now be able to wheel right up to whatever he wants to see.  We know he's going to master pushing himself in no time.  The Scooot is preparing him for his customized wheelchair, that will be perfect when we are out and about.

One of the greatest things about the Scooot is that it's more than just a tiny wheelchair.  When Isaiah is older, he'll be able to use it to crawl around as you can take the pieces apart to use that way- he'll be able to lay right on it.  It can also be used without the big side wheels so he can scoot with his legs if his body allows him to.

The Scooot will be something Isaiah will use.  For years.

It gives him independence.

Thank you Jack for sharing your birthday with Isaiah! Thank you Lisa and Jason for thinking of this, reaching out, and putting so much time and effort into providing Isaiah with such freedom. Thank you to everyone who donated and made this possible.

We are working on getting Isaiah an official wheelchair, a wheelchair that will be perfect outside the house, and will take months to get here once it's ordered.   This Scooot is giving Isaiah freedom in his home.

Now.

And we're so grateful.

It's an amazing thing to see our little boy who couldn't move now have a tool to help him get around his own home.  To see that sparkle in his eye as he claps for himself saying "I di (did) it!" after he "pu pu" (push pushed) the wheels and made them move.  This has seriously, I know I've already said it, but this has seriously opened up a whole new world for us.

Ya know how I constantly post pictures of Isaiah sitting up in his highchair? Well look out, because my bet is that over the next few months, the majority of what we share will be of Isaiah on the go. :)

____________

Don't forget to order an Isaiah T-Shirt if you want one!  We're placing the order this Wednesday so if you want one, we need to know what size(s) you'd like. Also, we're able to order youth sizes now!  If you'd like baby/toddler, let us know the size, we'll get back to you with the price (sorry it's taking so long to get the prices; Dave doesn't hound them like I would ha).   Please email us at oibelieveinisaiah@gmail.com or message us on Isaiah's facebook :)

Isaiah's First Wheelchair Demo

Check it out!  There's a wheelchair in our house! 

Back in January, we met a Wheelchair Rep (representative) at DuPont's wheelchair clinic.  That appointment was a nightmare.  I left angry and defeated, and feeling like they didn't get a clear picture of Isaiah and they didn't think he'd ever be able to move a manual wheelchair, that we needed to wake up and see Isaiah in the light they saw him in.  We agreed there that they'd get a demo of a wheelchair for us, one that offers the support he needs and can push, but I expected them to be setting him up for failure.

I spoke to Isaiah's PT and she works with the rep that we met at DuPont.  She spoke with him about how she sees Isaiah, they tweeked some things, and we worked it out so when the Rep came to our home with the demo, it'd be during one of Isaiah's PT sessions.

When they arrived yesterday, Isaiah was eating in his high chair and looking happy.  As I opened the door to let everyone it, I saw the chair.  

It's HUGE. Way too big.  It's 50 pounds with everything on it and not even including Isaiah's weight. 

I thought "I was right, they are setting him up for failure."

They made some adjustments.  We put him in it and Isaiah quickly went into the mode he was in back in January when we went to the wheelchair clinic at DuPont. 

How many people does it take to make Isaiah flip his lid?  

Four.  Three to drive him crazy up close and one to take pictures. ;-)

But, once they finished making the adjustments, and I was able to distract him with a story...

He calmed down.

His PT started encouraging him to touch the wheels...

and he did this:  (Warning, turn your volume way down/off, because this is one proud momma and clearly I yell when I'm proud lol)

Isaiah's first wheelchair demo #iknewhecoulddoit

A video posted by mrsvickymartin (@mrsvickymartin) on Mar 13, 2015 at 7:10am PDT

Ten minutes in this big clunky chair and he is already trying to move it!  Even adjusting his hand already!  Go Isaiah!

I knew you could do It, baby!

This chair is too large.  But the rep knows that, this was just the smallest demo he could get his hands on.

Can you imagine how well he'll do in a chair fitted for him specifically?  When he can reach both wheels? (That way he won't spin himself in circles. ha)

Currently we are figuring out the exact brand chair that will be best for him.  Figuring out the right wheel configuration for Isaiah (in the demo, the wheels are flipped, big wheels up front, small in the back) so he can easily reach the big wheels, but we're wondering if we had a different chair and the seat was back further/wheels tilted in, could he reach? Our heads are spinning and we're in talks with his PT and the rep.  We have his next PT scheduled to have the rep back again so we can order a chair, but we may reschedule.  There's a lot to understand in the wheelchair world!

Once the chair is ordered, it'll take about 3 months to have it customized for Isaiah.  We're hopeful we'll have it by his second birthday.

In the meantime, we have another set of wheels that was generously gifted to us by a sweet 2 year old and his sweet family.  More on that on Monday. ;-)

19 Months

Today, Isaiah turned 19 months!

He's still sporting 3-6 months clothes and at his last weigh in, he was just shy of 16 pounds.

He is loving sitting up to play.  His favorite toys seem to be his gear toy and his giant activity block that is bigger than him.

He is all about the animal sounds.  He moos like a cow, baas like a sheep, whos like an owl, caws like a crow (or vulture, according to his one toy), and now roars like a lunatic lion.  ;-) He's started saying "boo"and "po" for "pop" (when he's popping bubbles. but I know two men who will be excited to hear him say "po" and thinking he's talking to them.)  and this morning I swear he said "i-pa" for I-Pad. #firstworldmilestone

He had his first black eye and was diagnosed with hydrocephalus.  (He'll be getting his second official surgery in just about 4 weeks.  Barf!) But hey, he made it through the month break-free. 

All in all, I'd say it was a good month for Isaiah.  And we're looking forward to Isaiah rocking this month too.

Happy 19 months big boy, we love you! <3

Isaiah's First Shiner

So, we've posted some pretty adorable pictures of Isaiah on Instagram/Facebook recently, amIright? ;-) 

Little did you know, that in the picture above, we were trying to figure out if Isaiah was ok as while I was still in bed early Sunday morning, Isaiah took a tumble off of his Mickey couch and onto his play mat.  Dave was right there with him; he went down so fast that he just could't catch him.  I heard the thud and the hysterical crying and went running.

He calmed in about 15 minutes ("He" being Isaiah.  I am pretty sure Dave is still recovering).  We thought he had a broken left leg, but as the day went on and Monday morning came, that assumption faded as he was moving his leg again.  I'm not convinced something didn't break (maybe a fracture in his spine?), but he has been acting normal so we're just being extra cautious when moving him just in case.

But yesterday, after I pulled him out of his crib after nap time, I noticed his right eyelid looked weird.

I took the above picture yesterday with flash to show a friend, asking if she noticed it.  (It didn't show up at all in pictures without flash so this was my way to try to capture it.)  I don't think I have ever had the flash on for a photo before, and Isaiah thought it was the funniest thing on the planet.

Here he is this morning,  blocking the camera with his finger (lol), but you can see how purple his right eyelid has become.

When I touch Isaiah's eyelid, he doesn't flinch, so I don't think it hurts...we are 2 days after the nosedive and we are hopeful this is the only reminder.  (Dave is joking that Isaiah went skydiving without a chute...just a reminder, this was just off of his Mickey couch, not an adult couch.).

Isaiah is acting completely normal.  Part of me can't stop worrying that he could have done something to his skull but I think he'd be showing some symptoms...irritability, sensitivity to light/noise, something!  I emailed his doctor like a good hypochondriac and am waiting for a response.

In the meantime, I put Isaiah in his tattoo sleeper because I felt it went well with the black eye...(not that you can see the tattoo in any of the pictures I took. Boo!) But he has a heart on his sleeve that says "Mommy".

My little bad boy. ;-)

Awareness

Rare Disease Day 2015 really got me thinking.  Thinking about rare diseases like OI.  Thinking about awareness and what it means.  

What does it mean?

To me, it means knowledge.  With it comes love, respect, compassion, and understanding.

I believe that if a person knows the basics of something, they can see past what others see as "different".  

I know that the majority of the readers of my blog see Isaiah.  Sometimes you may see his OI, but thanks to your understanding of OI, you see beyond it.  You see his smile.  You see the sparkle in his eyes.  You see what he can do.

But is there more you want to know about OI?  About Isaiah?  About us?  

Wishbone Day 2015 is coming.  If you are new to the blog, Wishbone Day is celebrated in the OI community on May 6th each year.  It's a day of awareness of Osteogenesis Imperfecta and all you have to do is wear yellow and spread awareness of OI.  This year it is on a Wednesday, right smack in the middle of OI Awareness Week.  

During OI Awareness Week, I am planning to do a little Q&A series called OI Want to Know.  Do you have questions about what it's like to care for a child with severe OI?  I want to answer them and any other question you may have and basically nothing is off limits...OI, motherhood, my emotions, our family life, etc.

If you have a question, feel free to leave a comment on this post, email me, or send a message to Isaiah's Facebook Page.

I look forward to posting the answers to your questions during OI Awareness Week. :)

In the meantime, if you are interested in purchasing an Isaiah shirt, please let me know by March 18th.  Find out all the details here. :)