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. :)

T-Shirts

One thing that we've been wanting to do, that some friends and family members have been wanting us to do, was to create t-shirts in honor of Isaiah.

We put it off for a bit, mostly because I was over-thinking everything...but one day while Isaiah napped and I was lazily playing with the ipad, I created this...

I figured I'd use it for the blog when I create my own template (someday) but then I started thinking that it could be fun on a t-shirt.  I showed Dave and he agreed.  Then the wheels started turning.  We felt like we needed to make it yellow as a nod to Wishbone Day.  We wanted to make it bright and stand out, just like Isaiah.

What about a design for the back?

We agreed that we both wanted to use Isaiah's name as an acrostic poem, and with that, make it so each line makes a statement about what we believe in when we think of Isaiah...about words people have used to describe Isaiah...

OI believe in miracles...OI believe in resilience...OI believe in acceptance...OI believe in spirit...OI believe in awareness...OI believe in hope...and of course, OI believe in Isaiah. :)

and with that we had a design for the back.

Dave has a friend who works for Upper Room, Inc and with his help, we've designed Isaiah's first shirt:

It will be a Gildan brand unisex shirt, and will be available in adult size only, from small to 3X. (Hopefully if we do this again in the future, we hope to extend to infant/youth sizes, but we want to start out small) ;-).

Small through X-Large will be $14.

2X-3X will be $16.  

Shipping and fees are included in these prices.

I want to be clear that this is not a fundraiser.  The price is estimated, so depending on how many shirts are ordered, it may go down, so we won't collect any money until we know how many shirts to order.

We are taking orders 

starting now until 11:59pm Tuesday March 17.

You can place an order by contacting us on Isaiah's Facebook page, through email at oibelieveinisaiah@gmail.com, or by phone call/text if you have our number.  Be sure we reply to you.  This will ensure that I didn't miss your request.  Our reply means your name and requested quantity of shirt(s) have been added to our list.   If you don't hear back within 24 hours, remind us, hound us, etc!  

On March 18th, we will place the order for the shirts.  It takes approximately 10 business days to make and ship them to us, and then we will be able to mail them to you once payment is collected.


We are really excited about these shirts and we hope you are too.  <3  If you have any questions, feel free to ask! :)

Eating Update

It was a little over a month ago that I admitted that I was doing Isaiah a bit of disservice in terms of his eating, so today I am here with an update.

I just realized I don't have any current pictures with how well he is doing with a fork, so here's the one I posted a month ago after reading and trying some great suggestions.  

Although we fill his fork, we don't hand it to him.  We put it either in a bowl or on the table and it's his job to pick it up and put it to his mouth.  He's rocking it.  His OT was impressed with his new skill of using a utensil, and said it's typical to first start out by putting the food on the fork for a little one, so we're happy with the progress.  

Isaiah has made HUGE progress in drinking.  He has been doing well for some time with holding a sippy cup when laying down, but it was tough when sitting up.  We had been tipping the bottom of it for him but we learned that there's a fine line of helping him with this task; if we offer too much assistance, he takes advantage and won't even hold the handles.  We learned if it's too full, he can't lift it, but if it's not full enough, he can't get the water to the mouth piece.  Ice helps balance the issue nicely.  It also makes him happy because of the cold temperature and because it's fun to shake. ;-)

But recently, he doesn't need us anymore.

And happily, he gets annoyed if we help!  Hooray independence!  For real!  For real!

He still needs help with things like yogurt, apple sauce, and pudding, ...basically anything on a spoon, but if it's in a packet, he's starting to get it on his own!

We do have to help squeeze, but guys, he's even learning to suck the tip of the puree pouch!  Like a straw!  FINALLY!  This is something we've struggled with for months.  I stopped pushing it at 13 months because honestly he didn't get it, he wasn't ready, and we were all frustrated.  We backed off and once in a while, if he was refusing the spooned puree (he's still finicky about fruits as table foods.  he LOVES them pureed, but hates them as table foods.  We think it's a texture thing.  It'll come in time.), we had put the packet to his mouth and he'd take it that way.  But lately, he's taking the packet himself and foregoing the spoon.  And it's awesome.

We've still been struggling with finger feeding.  He seriously would throw 99% of what we offered to him on the table. I tried a mat and he'd throw the food from it and then throw the mat.  Nothing would go in his mouth.  Nothing.  This week I introduced to him to one of our suction cup bowls and um, WHY DIDN'T I DO THIS SOONER?  

I'm mostly able to put a pile of finger foods inside of the bowl, and although he still sometimes pitches it behind him, he's more likely to put it to his mouth now than ever before.

So that's my long-winded update on Isaiah's eating.  I am starting to work on a few posts about WISHBONE DAY! (woot woot!), Isaiah getting mobile (ahhh), and t-shirts.

Did I just say t-shirts?

Why, yes. Yes I did.

Thanks for Wearing Jeans!

First I want to say...

Seriously, thank you to those of you who have been thinking of Isaiah, those who changed their profile pictures to Isaiah's photo, and those who shared facts about Rare Diseases on social media on Saturday.  You guys rock! :) 

Now I shall be turning my focus to Wishbone Day. ;-)

_________________

Isaiah has learned this rolling maneuver that gets him across his playmate.  He literally pulls his feet close to him and does this rolling back and forth thing.  It's not a fast way to travel, but it's getting him where he wants to go on that mat.  (In the picture below, he had started out on the edge of the mat, literally on the letters F and I...and then about a half hour later, I realized that he was against the couch.)

He's also doing a fantastic job sitting up.  I have backed off quite a bit from supporting him from his chest.  Thankfully my reflexes are quick enough if I'd need them to be but when Isaiah starts to tip forward, he does a great job catching himself on whatever he is playing with.

His torso has gotten so strong!

This week we don't have too much on our plate.  We're working on finding this guy a dentist and waiting to hear from someone in the anesthesia department at DuPont so we can chat about his upcoming shunt surgery.

In the meantime, don't try to take a picture with a kid who just wants to watch his shows, even during a commercial, or you get this last wonderful shot.  ha. 

Mooooom, get the phone out of my face, don't you hear Mickey's voice???? I MUST SEE HIM!"