Adaptations

This page will include pictures/descriptions of things Isaiah (type III severe) has or things we've done to make Isaiah's life a little safer and/or a little easier.  I will try to include links for items where I can.   Hopefully this page will be seen as a resource for other parents of babies with OI.  Please remember though, they call our amazing OIers "snowflakes" for a reason; what works for Isaiah may work for another OI kiddo or it may not.  Please be cautious with anything new that you try if you have a severe OI baby.

Isaiah's foam mattress

The hospital provided us with this mattress when he was born.  We actually have 4 of them (hoarders).  One of them has the sides cut off; it was used to attempt breastfeeding in the beginning (which also involved 3 other adults helping to position Isaiah and the mattress. Talk about awkward? lol).  I actually loved using this specific mattress for Isaiah's sponge baths [before we started baths in his tub].

Isaiah never really uses his mattress now that he's so much stronger.  We keep them around for breaks and doctor appointments (much easier to get a shot on his mattress in my arms).

You can never have enough receiving blankets.  I use to use them to cover his mattress (on top of sheet protectors in case his diaper springs a leak)...it was a bonus if they matched his clothes! haha

Most importantly, I use his receiving blankets as rolls and padding.  His legs tend to "frog out"; the rolls make it so Isaiah keeps his legs straighter.





Here is Isaiah's swing.  It has 4 receiving blankets in it.  Two are folded and make the seat less of a "bucket" and two are rolled to sit on either side of him.







I used to do something similar in his bouncy chair** and rocker except I added in an extra support that kept his head midline and added extra cushioning behind his shoulders.

There are 5 receiving blankets in this chair.  Two on the back, one for the bottom, and a roll on either side to keep his legs from frogging out.  Once that's set up, I just pop the support pillow there.

Isaiah's bouncy chair had 4 blankets- 2 in the back and 2 on the bottom.

The support pillow is made by a company called Ben-Bat.  We were introduced to them by a fellow OI mom who sent us a box full of clothes for Isaiah along with this pillow.

It really helps him keep his head in a midline position.

When Isaiah is in his chairs, he often likes to play.  He really needed a surface to play on.  When I made this, he was not ready to sit up straight and his bumbo is out of the question due to the shape of his legs, so I had to improvise.  Isaiah's PT and a fellow OI mom shared an idea with me- cut out the side of a paper box**!

Worked like a charm!

I added contact paper to the lid so that it's easily wipeable.  I also used command stripes (the ones use to hang wall art) to make it so the lid attaches onto Isaiah's chair.

**We stopped using this "table" when he was around 9 months old...once he started sitting in his high chair.  We also stopped using all of the bouncy chairs at 12 months.  Isaiah had developed kyphosis in his lower back (curving on the spine), and the hammock-like seats were not supportive enough for his fragile bones.  

At 5 months, Isaiah had grown big enough for his Hugga-Bebe.  I'm assuming the company went out of business but sometimes you can find them on Ebay.

We've used it for tummy time, his activity chair, and will be definitely using it in a park swing.

For 6 months, Isaiah got around town in a car bed.  It was great because it kept him sprawled out and his bones safe.  

Now he travels in his car seat!  The snuggin go is the reason he can travel so well in his seat.  It keeps him midline and comfortable.

We also used to use the snuggin go in one of his chairs too.

He used to stroll around in his bassinet stroller.  His mattress fit perfectly inside and he was very comfy in there.

Nowadays he travels in his carseat/stroller combo.

When walking around the neighborhood, Isaiah rides around in just his stroller (meaning, the car seat stays home).  We use the snuggin go but I've noticed that his legs really "frog-out" in this position/stroller.

We grabbed a few pool noodles from the dollar store (recommended by other OI parents) and I cut a few pieces from one to make supports to keep Isaiah's legs in (and less froggy).

 The noodles make a world of difference.  Can you see how his heels are down on the seat when he has the supports?

When it comes to playing, I used to limit Isaiah to only soft toys.  

Once he started getting more interested in play, I slowly introduced hard toys.  He's always loved his hanging bar (similar to an activity gym), but if I had left the toys it came with, he never would have been able to reach them.  I added extra rings and it made a world of difference.  He can now reach, shake, and discover.  As he grows, I remove rings which forces him to stretch more. :)

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It's been a while since I've updated! Isaiah is almost two years old as I type this and received the coolest car as an early birthday gift.  I love when we can find toys you'd find in a toy store that work out well.  This car has fantastic head support but needed some torso support.

I asked my fellow OI moms and they came at me with fantastic suggestions.  I ended up going with the pool noodles since it's summer time and Isaiah gets sweaty (the other great suggestions was his Snuggin Go pillow).  I also included some styrofoam blocks and foam pieces to support Isaiah's legs.  These are all easily removable if friends come over and want to play or if Isaiah gets rods placed in his legs (as that will change his leg length and shape dramatically).

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Adapting a standard potty! More info here.

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More to come as we work with other materials and introduce Isaiah to other ways to adapt.

Updated 04/27/2016