Wednesday, November 19, 2014

What exactly does "hip" taste like?

Quite frequently, finding humor is the only thing that keeps me from breaking down during the day. Sometimes our multitude of special needs and appointments (current and future) get a little overwhelming.

Today, Emily had an appointment with her plastic surgeon. This was just a basic follow up but I wanted to ask him some detailed questions as her orthodontist is wanting to start her palate expansion in the next few months. This will make the hole in her palate bigger and I wanted to make sure I understand how all of this will work before we start the expansion.

While we were discussing the expansion, Emily's future bone graft came up. This will be a bone graft to fill in the missing bone in her jaw where her cleft is (left front of her mouth). This is something they will plan on doing around age 10, so in the next year or so. 

And it's a surgery...which is still a huge trauma trigger word for Emily so as soon as she heard that we couldn't discuss anything else. In the process of explaining it to her she asked where the bone would come from and we told her her hip. 

To which she replied: "Ewww, my mouth will taste like my hip!"

Thursday, November 13, 2014

An day unexpected

Today Alex was being tested for growth hormone. We were told it would be a 1.5 hour test, but when we got here we found out it would actually be 5.5 hours! 

I am so grateful to Mark (and his coworkers) for him being able to have the morning off because three of the girls also had speech and occupational therapy this morning.

Oh, and the plumber came for the finish plumbing as we were leaving--while Mark  was at a dentist appointment. Does it seem like we're in a few too many places at one time? Kind of felt that way, too. 

So there was a little rearranging sine I wasn't planning on being at the hospital past lunch. Mark made lunch and brought it up and then went back to work. The other kids have been in the lobby while Alex did this:

The test made him really tired and he slept through most of it. It's almost 2 now and he's eating lunch. The test had the potential to make him sick to his stomach  and I am so grateful it didn't. Yay for being headed home!

Tuesday, November 11, 2014


Despite it being a bit chilly, we did go trick-or-treating this year. Danielle's latest obsession is Elsa from Frozen so she (like many other little girls this year) wanted to be Elsa for Halloween. I made the somewhat (in hindsight) not very bright suggestion that the kids could all go as Frozen characters which meant lots of costume improvisation for me! 

So above are Kristoff, Sven, Hans, Elsa, Olaf, and Anna!