When your Tubie becomes Houdini...
When you bring home your bundle of joy you have a huge list of baby necessities...
Diapers/Wipes
Car Seat
Bag to carry the kitchen sink ;-)
And...
CRIB!
The bed for your prince or princess to dream wonderful things and feel safe until such time as they attempt to climb out. This wonderful time happens typically around 18 months to 2 years old...you hope it lasts that long haha!
But for Tubie kids on overnight feeds or those with sensory, physical, or emotional needs the enclosed bed may be a necessity for a lot longer...This is the case with us for Nico.
Unfortunately we are to the point that despite his hypotonia and gross motor delays he has broken his crib and escaped!
Yes, Escaped while hooked up to his feeding tube and scared us to death. This may seem minor and we maybe could just reason with him right?
For him this is not possible right now and we are in survival mode yet again.
We anticipated this need over a year ago and attempted to start the process of our insurance helping us get the real deal "safety bed". A huge cage looking bed that can be padded or fully enclosed and is locked from the outside. (See the Picture above, Safety crib in hospital)
This sounds barbaric, but for us this keeps his button, body and pump safe from an active child taking a run across the room and dragging his feed with him ending in an emergency.
With all the documentation and significant needs you would think this process of getting the necessary bed would be easy. Think again! We know of a local family who has tried 10 times for their paralyzed child to get a bed and been denied as many. WHAT!! That is just crazy, no one wants their child unsafe and this puts parents in a tough position.
We can't wait on insurance so what do you do?
These beds cost up to $8,000! So if you can't beat them join them, DIY it is.
Thankfully we aren't the only parents who are looking; and the lovely ones who share their ingenuity with online tutorials and pictures of what they have come up with is awesome. We will be building this bed as thrifty as possible, but safe and strong. And our pediatrician has agreed to write us a script or letter to post in Nico's room in case some well meaning person feels "caging" our child is against their beliefs and decides to take us to task legally. Yes there are those people in our town...
Stay tuned! I will post our DIY journey and the cost, the bed frame comes tomorrow and off to Lowes for the necessary items and hardware to make our little Houdini safe once again!
