Go Baby Go

At the very end of April, I was stalking Facebook (as I do too often nowadays) and came across a post from UD goBabygo that they'd be having a free workshop only an hour away from us....all I had to do was fill out an application to see if Isaiah would be eligible.  I got a call not too long after that he was and that they had a car for him!

We headed east and spent the day with Isaiah's "pit crew" who helped to make Isaiah's car safe for him.  They added head support, a harness, an easy to push button to make it go, and so much more!

They worked so hard while we hung out!

Isaiah's crew did such an amazing job...from the head rest to the decorations!...the sad part is Isaiah has been deathly afraid of it.

and we were then hit with days upon days of rain which made it tough to go out and try it at home.

I did have a chance to show it to Isaiah at home on a brief sunny evening....but he just showed his fear again. :(  I thought maybe it was because he was overwhelmed by all the supports? I tried his one support pillow to see if that would make it better for him but....

It was a no go.  which is a total bummer because I'd love to see him cruising around in his very own beemer!  For now, I've hidden it out of his sight and am hoping some time away from it and growth will make it more enticing to him.

Besides Isaiah's "drama llama" reaction (as I so lovingly described it when we tried to sit him in the car again), the whole experience was amazing! and it's so cool to give Isaiah some motorized mobility! goBabygo is a fantastic program offering mobility to kids who need it, opening up a whole new world to them. :)

Strengthening those Legs!

Back in the beginning of April, Isaiah's PT brought a Gait Trainer for Isaiah to try.

The gait trainer was here for just a few weeks as we worked on ways to tweak it to make it work for Isaiah and figure out if it was something worthwhile to pursue with insurance.

Isaiah loved it.  He loves having his feet on the ground and he loved trying to move in little ways.  and I believe it woke him up to realize that his legs are useful parts of his body....since then, Isaiah has even been learning how to scoot when laying on his back!

2.5 and learning how to scoot his little self? #OICAN! All I am doing is holding his feet and he's doing the rest. An inch at a time and with every push my heart soars. My baby is getting so strong!!! #osteogenesisimperfecta

A video posted by Vicky (@oibelieveinisaiah) on Apr 22, 2016 at 11:07am PDT

Once we gave the demo gait trainer back, I knew Isaiah needed to continue to "stand" so I spoke to a few other moms of kids with severe OI and one suggested the Joovy Spoon walker.  It looked great! Not covered in toys, a removable tray, and can grow with a child to three different heights.

Isaiah immediately fell in love with it.  I was bummed that even the shortest setting was just too tall for Isaiah.  We found a way to modify it thanks to other parents of little people (who have modified theirs successfully), but in the meantime we've placed some foam under his feet so he has a ground to stand on.

Hopefully, we'll hear about the gait trainer soon.  I know Isaiah's PT has written a letter of medical necessity and Dr B wrote a prescription for us so now we wait for insurance to approve it so we can order it! :)

but how amazing will it be when Isaiah really learns to walk in this baby?? :) After the last few weeks of Isaiah really working his legs, I am very optimistic! :)

Countdown to Disney World

The countdown is on....we've been having fun lately talking all about Disney World with Isaiah.  We have been pretty obnoxiously excited for this one!  Isaiah and I put together a simple paper chain countdown and we've had fun ripping a link off each day...

and then pointing, counting, and naming the numbers that are left...

Along with the paper chain, I put together a calendar countdown containing an activity to do each day.  They range from simply "watching a Disney movie" or "eat Mickey pancakes!" to "play Toy Story Legos with daddy" or create something Disney inspired....

Thanks to Pinterest, we've made a Kion megaphone (Kion is from a new show on Disney Jr called Lion Guard)...that was more impressive to Isaiah when we were creating it than when it was complete.

We created a Mickey sun catcher that I thought up...back in my days running a before and after school program, we'd have the kids color coffee filters with washable markers and then spray them with a water bottle so the ink would smear, let it dry, and create something fun (usually a butterfly)...

This time I enlisted my Cricut and made two 9.5" Mickey heads (using the Mickey Font cartridge, Mickey Tag, the uppercase O- just without the middle). Once the filter was dry, we glued it between the Mickey heads, hole punched the top and hung it in the window.

We made binoculars based on another Lion Guard character, Ono, who is actually voiced by an actor who also has Osteogenesis Imperfecta (fun fact for you). (link to that idea is above with the Kion megaphone.)

And we've created a clown fish using painters tape, yardstick, and a dot art marker.

We've had so much fun! The chain is getting smaller and we are getting more excited for our trip.  We've started packing and putting things aside and are looking forward to traveling without oxygen since Isaiah is strong enough to travel without it! We can't wait to share pictures and videos from our trip (I am promising myself that I will take tons of videos this time!)...ahhh is it time yet???? :)

Wishbone Day!

Today is Wishbone Day! Aren't sure what Wishbone Day is?  It's the day of awareness for Osteogenesis Imperfecta.  To celebrate it is simple: wear yellow! It's not a day to fundraise for OI or anything like that....it's just to bring awareness to this rare disease.

This is Isaiah's third Wishbone Day.  His first, we spent at the state Capitol building and made it official in the State of Pennsylvania thanks to our friend Fallon and Senator Folmer. :)  

These last two, we've had a good chunk of time at home to celebrate....I have gone a little crazy decorating and gathering everything yellow for Isaiah to enjoy.

And given him a grand entrance into the fun.

It's still up for debate on whether Isaiah is a fan of the streamers though...

I'm pretty sure he wasn't as impressed with the streamers as he was last year. 😂💛 (after listening to the video, he's totally saying "Happy Wishbone Day, Carl" as Carl walked by lol 😂 #wishboneday #carlmarl

A video posted by Vicky (@oibelieveinisaiah) on May 6, 2016 at 5:18am PDT

Nemours (Isaiah's favorite hospital) joined the OI Community in talking about raising awareness for OI.  You can check it out here. 

It's nap time as I type this, but we are looking forward to continue the fun when Isaiah wakes and his daddy gets home from work.  In the meantime, I'll enjoy some down time and continue scrolling through Facebook and checking out how it's turned yellow for the day. :)