Thursday, January 5, 2017

Rehab Day 10 and life after rehab

We had a family meeting on Tuesday to discuss Abby's plan of care and what life will look like after rehab.  It wasn't quite what we had expected.

Abby will go home on next Friday, January medical transport.  The halo is not transport safe, which means we should not drive her in a car.  

If you're starting to put two and two together, it also means no American Heritage Girls, no going out to dinner, no unnecessary medical appointments...and no school. πŸ˜ͺ. She will be home-bound for quite a while.

We knew Abby would be devastated because she loves school, and it breaks my heart that her one piece of normalcy is being taken away.  We waited to tell Abby until Matt could be here and until Child Life could help us create a plan, which is why I haven't said anything on here. Child Life wrote a great little social story with photos of Abby to explain about her halo and what life will be like with it. 

She didn't quite get it at first, so we had to just put it right out there.  She cried a little, but overall handled it much better than we thought. We have been brainstorming ways that she can stay connected with her class and she has enjoyed thinking about the funny places we might do school during the day! (So far, we have come up with in the teepee, in the treehouse, on the front porch, or in her bed).  

Her amazing teacher will continue to teach her in the evenings (she is so wonderful!!!) and her equally outstanding one-on-one has promised to visit too!  We are hoping to set up some play dates with her school friends too (that are healthy and have a flu shot!)

The team here has been great about supporting Abby, and I know her school will make it work.  We are just sad for her.  She wants so badly to just be a kid.

In addition to no school, not being transport-safe means that she can't go to therapy.  So guess who will be her PT, OT, feeding therapist, and speech therapist?!?!  πŸ–πŸ»πŸ€—. Yep, me. Now, I've got six years of experience in doing therapy.  That doesn't really scare me.  I have just always had a professional who is in charge and who tells me what to do!  I won't have that now, and it's a lot of responsibility.  The team here assures me that I will be fine and that they are just an email away.  They are training me extensively and are creating a packet to explain her therapies and next steps as she improves.  I've been picking their brains about tools to order and have filled my Amazon basket.  

In true Julie fashion, I was sent reeling over all of this information, spent a little time hiding from Abby while I cried, then put my big girl panties on and got to work.  We are figuring out how we will make this work and staying positive, because my response is projected onto Abby.  

So while this is not how we thought things would be and certainly would not have been our choice, we are thankful that:
* Abby is doing well enough to go home soon 
* She has an amazing school that cares so much about her
* Her awesome teacher will continue to work with her at home
* My wonderful family is willing to help out wherever needed 



Tirzah said...

We will miss her in AHG. My prayers are with you all.

roxs81 said...

Have you maybe thought of video conference with her class, so that way she can be home but still feel like part of the school?

Jeffery said...

I have a friend who was pretty much in Abby's same position. A different malady kept him home, though. It had to do with the aftermath of major reconstructive surgery for several birth defects mostly on the head, but also scattered throughout the body. Abby is definitely lucky to have so many people caring for her. I hope she bounces back from this.