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. :)

Potty Talk

Sorry if you were looking for that kind of potty talk....because today I am literally talking about a potty. :-p

Trying to find a potty for Isaiah has been a challenge.  I searched all of the local stores but steered clear of online for this one because I needed to see the hole and I needed to touch the seat/cushion itself.  Physically, although Isaiah is 2.5 years old, he is the size of a 7/8 month old due to his OI (it can cause shorter stature).  I don't know of any parent potty training a child at that age, let alone that size....so trying to find a potty that worked with a 7/8 month old sized-tush was a challenge.

I wanted to forget the whole thing and look into a Rifton Toiling System but Isaiah's physical therapist (who would write the letter of medical necessity for the Rifton) wanted to search for a standard potty.  So I did, I searched and I searched and I searched.  Target.  Walmart.  Babies R Us.  Buy Buy Baby...it was at Buy Buy Baby that I actually spotted a possible winner.

The hole looked smaller than any I have ever seen and the seat cushion is squishy!

 Plus MICKEY! (Link here....you can also find it on Amazon. I used a coupon, so I got it for a dollar less than Amazon was selling it for.)

If I captioned this, because of the look on his face, I'd say he's thinking "OMG mama, don't take my picture when I'm sitting on the potty"

Isaiah is able to sit well on this potty with his femurs supported but his tush in the right spot on the hole.  Also, I am able to get my hand in there to wipe and pick him up until he is able to wipe himself and get himself off the potty.

But I didn't like that it lacked support/arm rests....so I thought we could make something during a physical therapy session using PVC.  One day we went to The Home Depot and grabbed quite a bit of materials...things I thought could work....

and brought it all home.  Next PT session, Isaiah's PT put this together:

Supports!  Although because I couldn't find certain connectors, we had to make it extra long...and guys, our bathrooms are teeny tiny and although we may use it in the living room, I wanted to have it sized to go in the bathroom because I'm specific and stubborn like that.  So back to The Home Depot I went, grabbed a few new connecters, and let them sit in their bag for a few weeks (the original rail was made in the beginning of March)...until today....because today I was feeling motivated to get it done.

I added a support to go behind Isaiah, making it structurally more intact and giving Isaiah something to lean against if he needs to....adding a piece of pipe insulation as well.

Looking good, don't you think?

I also found these adorable tiny underpants on Amazon for Isaiah to wear during training....clearly I'll need a few more pairs but this is a good start!

All in all I think we are pretty ready to potty train Isaiah when he is ready....but I believe he needs a bit more time to mature some. ;-)

In the meantime, While I was putting this together, I took measurements of everything in case someone else would need to make something similar for their child.

To make a PVC rail (with all 1/2" PVC and pieces), similar to this you will need:

1- PVC and tube cutter (I got this one while at Home Depot)
10- 2 foot pieces of 1/2" PVC (they were just $1.38 each and I overestimated with buying 10...but it gives leeway for mistakes)
4- Tee pieces
2- 90 degree elbows
6- 3 way elbows with 6 male adaptors if one of the holes is made to screw into (that's all I could find at my local Home Depot but the ones I linked look to be all the same)

You'll want to cut your PVC. You'll need:
3- 14" pieces for the width of the railing (one covered in a 13" piece of pipe insulation or pool noodle...I had both on hand so I went with the pipe insulation)
6- 10" pieces for the height (this would vary depending on the size of your child)
2- 6" pieces and
6- 4.5" pieces (for the length of the rail.)

And then piece it all together! (Pictured below, because describing this into words hurts my head. ;-)

and another angle...

I took this picture before pounding it all together with a mallet so the one looks a bit off the 90 degree angle...but it just needed to be pounded in ;-)   You could glue everything for good measure but so far just pounding it all really good has made it nice and tight.

And the best part?

It fits in our half bathroom just perfectly. :) I'll keep you updated when we begin this next phase of our lives.... but likely without pictures, because who wants to see a kid on the potty on the internet?  (if you answered "nobody", I like you!  I am absolutely an over-sharer in life...but that would just be too much for me.  I do want Isaiah to love me when he's an adult. ha) :-P 

Pop Pop

Two weeks ago I was all "hey, I'm getting back into the swing of this blogging thing"....for a week.  Last week I had a tough time sitting down to share anything because what who was most present on my thoughts wasn't Isaiah, it was his Pop Pop.

Last Thursday marked one month since my dad passed away.  I've had a hard time comprehending that it's been that long when it feels like just moments ago that I got the phone call from my sister.  And it was just 24 hours earlier that we spoke to him.

It's been hard to accept that I can't call him on the phone to talk to him about what salad dressing I had on my salad anymore :-p or that he's not involved in any more FaceTime calls with Isaiah....looking so proudly at his grand baby....and me.

He was a fantastic father.  He was supportive, loving, always offering advice... He was an excellent example of how to be a loving, compassionate, and patient parent.  

because he sure had to be patient with me... ;-)

I am so grateful that he was able walk me down the aisle and to see his first grand baby be born.

and that he put up with my obsession with the Backstreet Boys on the many car rides that he'd take me on to my friends' houses in my teen years...I'm grateful that when I smell cigar smoke, I am instantly brought back to Halloween nights of my childhood where he would wait on the sidewalk while my sister and I would trick or treat, cigar in hand, smiling at us as we ran to him with our loot.  (He never liked that I thought of him when I smelled that, but it was his yearly smoke and it really was fun trick or treating)...I remember how he'd always come in and check on us before he'd head to bed, always stood in our doorways watching us sleep for a few moments, and how I used to think it was creepy but now I do the same with Isaiah and completely understand the thoughts that went through his head while he stood there. ;-) (gratefulness and so much love)

Why do I share this now? Because as I reflect on recent days, Isaiah isn't asking for him as much as he was...but yesterday...yesterday he kissed Pop Pop's picture after asking to talk to him repeatedly.  I had a hard time not crying when he wouldn't move on so we went outside to blow bubbles...together we blew bubbles to heaven for Pop Pop.

and after we watched a bubble go high in the sky, I put the bubble wand back in the bottle for more and when I lifted it out a big breeze came and surrounded us with bubbles.  Pop Pop blew bubbles for us, that's what I said to Isaiah...and Isaiah said "Thank you, Pop Pop" while he giggled and tried to pop some of them.

Thank you Pop Pop, for being the best of the best. I will love you forever.

STANDING for the First Time

You read that right, my friend, for the first time in Isaiah's two and a half years of life, he got a glimpse of what it feels like to be upright with his feet on the "ground" (in quotes because we had to make a little adjustment there).  Isaiah's PT brought a gait trainer to our house to try!  Are you wondering what the heck a gait trainer is?  Well, it's a device on wheels which helps a person who is unable to walk independently to learn (someday, kids!).  It's slightly comparable to a baby walker but has a lot more supports available.

Initially, he was hesitant....but that seriously lasted no more than 10 seconds.  

In the words of Isaiah, Ta Daaaaaaaa!!! 

Look at those toes touching the ground...well...the top of our ottoman.  Even the smallest gait trainer made by this company (the Rifton mini pacer) is too big for Isaiah, but only by a few inches and in all honestly, we're not intending to use it to teach Isaiah to walk just yet...the purpose of this for Isaiah is to give him a safe supportive piece of equipment to get the idea of standing in and to do some weight bearing to strengthen the muscles in his legs (there's actually a sling that he sits on which takes some of his weight). The ottoman topper works to perfectly help his feet touch the "ground" and is actually perfect because it has a bit of give so he's not pushing on a very hard surface (like our hardwood floors).

He seriously warmed up to this new position and device so quickly...

And after a half hour in it, I went to take him out, only to get this reaction from him...

"Not yet, mama!" His first time in a gait trainer and he spent an entire HOUR in there.  It is very easy to get him in and out of it myself (and that's a mega perk in my book) and when the time comes that he wants to take steps, that ottoman topper is perfectly inside so he'd be able to walk backwards and forwards.

We have this on hand for the next week for Isaiah to continue to check out and we'll be doing some research/finding a DME (a company that can provide this) to order one for Isaiah sometime in the future.

It was so insanely amazing to see him like this today.  To see him enthusiastic, with his feet flat, goodness, he has come a looooong way.