Tuesday, July 24, 2012

Life after the Moebius Syndrome Conference 2012

Life is overwhelmingly busy, I probably should be doing other things and not writing this but oh well this is more fun...

I still have decompressed and taken in all the info from the conference.  I still have paperwork to fill out and doctors to get together and blood work to get arranged after the 3 consults that we attended for Luke.

As much as I kept saying we were going on vacation, it was not a vacation of time or energy, it was just a vacation from our house and our normal routine.  It was fun but exhausting as I was not able to sleep while up with Luke.  He did not sleep well and I was constantly worried about him catching his tubes and pulling his trach out.  But we saw people, talked to people, and got out to see more of the world.

Sara Rosenfield-Johnson of Talk Tools did her end of study evaluation on Luke and was very impressed.  Go Luke!  Luke even tried with minimal protest 3, yes 3, new tools!

Oh, and did I mention that I never realized how well known Luke is.  Many people recognized him and knew exactly who he was.  He was a star.

Luke did awesome and just went with the flow.  Hannah got pretty fussy by the end of the time.  We went to see the aquarium.  Luke loved it!  He signed "shark" and "hippo" which I haven't seen him sign before.  And he did a lot of signing about "fish" and some about "turtles".  It was great.  The hippos were my favorite and at the end of the day we had a little more time and I asked Luke if he wanted to go see the hippos, sharks (in a tunnel where they would swim over you) or the fish (very big window lots of other animals too) and he right away signed hippos! I was glad and we got to see them above water and more active the 2nd time around.  Plus we went through the shark tunnel again to get out.

The grandparents were key in our trip and we couldn't have done it without them.  They spent countless hours with Hannah, and Luke during the trip while I was off learning and working on other things.

Learned more about sleep disorders, autism and Moebius, ideas to increase social and imaginative play, sensory issues (through my mom), and much more.  I also met a mom who's baby miraculously stopped having hypoventilation. Wow, great story and will have to follow up more with her when I get the time.

So what has been going on since being home...
Hannah is a walker!!! and starting to be a climber, yikes!
Luke is doing much better at play thanks to the great ideas at the conference that mostly solidified (and thus kicked me into more action) what my Early On therapists were telling me.  Plus really getting out probably did wonders for him.
Unpacking, washing, trying to catch up with the day to day workings of a household.

And we are still trying to sell our house.  We found one that we LOVE but we need to sell ours.  Prayers in this area are very much appreciated.  We are looking to move to just have some more space and better space for Luke, the nurses, and Kevin and I to all coexist (and Hannah too, I am sure she would like a room that isn't storage as well).

Big surgery coming up on August 17th!!!  Luke is getting his lower jaw brought out to help create a correct bite and thus help with eating and talking.  Things he doesn't do now but will be hard to do without the surgery.  I am nervous and a lot excited about this surgery and it will change the look of his face and the possibilities for eating and talking.  This will be a rough period on Luke as well as Hannah, and us as we will be on 24 hour Luke duty while he is in the hospital.

Okay, I need to get working on cleaning the living/play room and getting my head on strait for tomorrow's activities.

Luke and his grandparents at a meal.

Luke and our good friend Leslie.

Luke with Kay (Moebius Syndrome groups in South Africa) and Tim Smith (Many Faces of Moebius Syndrome founder)

Hannah and I chatting.

Luke and I with Renee from Talk Tools, we have been Skyping with her once a month for a year so it was nice to see her in person.

All the Moebius kids.

Hannah having table food with Grandma.

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