Tuesday, July 9, 2013


The boys and I are headed to Seattle today!  My friend, Jodi, and her family moved there right after Christmas.  We decided to go visit because, well of course, we miss them and also because we might as well pop in on Dr. Dobyns and another researcher, Dr. Mirzaa, who is another doctor who is researching megalencephaly and MPPH.  We don't really think we'll learn anything new but since the specific gene mutation Luke has is so rare we decided we might as well take advantage of a place to stay and a check in with some great doctors!  We're excited to spend time with friends and glad that our 'business' will only be one short day of our trip.

I'm flying with the boys by myself and Dan is coming out to meet us Friday.  Luke has come down with a nasty ear infection and cold and Ben woke up with a nasty cold this morning....thank goodness my sister in law gave me some drink tickets for Southwest!!! Thanks, Amy!!  It could be a long 4 hours!  It's just our luck that they've been completely healthy for a long time and then within 24 hours of a long flight....all *#@& breaks loose!! 

Speaking of Luke's ear infection, we just went back to the ENT about two weeks ago.  I wanted to have Luke's tube checked as well as an unusual bump on his ear.  Our ENT has never seen a growth like that before (of course!) so he's going to biopsy it.  Originally he was going to go ahead and remove Luke's remaining tube because he has had no problems with it in quite awhile but Luke had different ideas!  I sent pictures to Dr. Mirzaa and she said that some children with a similar overgrowth syndrome, M-CM or MCAP, have lipomas.  When I mentioned that to our ENT he was somewhat doubtful because Luke's lump is very hard and I think lipomas tend to be fatty...we'll find out soon.   That biopsy surgery is scheduled for July 25th. 

Weird ear thing...we'll see!!!

We also had Luke's 6 month MRI which  I am so happy to report was uneventful!  Nothing has really changed which is good.  We can now go to yearly MRI's which will be nice and less stressful for Luke (ok, for me, too!!!).

We were able to take part in an Epilepsy Walk benefiting the Epilepsy Foundation of Missouri and Kansas.  Although it was early it was a lot of fun! 

Remember last year when I told you about PMGAawareness.org?  The last weekend in June was the first PMGA Family Convention.  Two of the board members in Jacksonville who were the ones who originally started the website/organization pulled together a long weekend of speakers, therapists, education and fellowship.  Some friends of ours generously gave us some airline miles so I could go.  I was having a hard time deciding to spend the money on myself.  We decided not to go as a family since we already had our Seattle trip planned.  I am so glad I was able to go because it was simply amazing.  I was able to meet many families who I'd only known online.  I thought we'd spend a lot of time talking about PMG and therapy and doctors...and we did.  But we also spent time talking about life and ourselves and family...I am not a late night girl but we were up a LOT and I loved every minute of it.  I was able to meet a few moms that I have been talking to either on the phone or through Facebook or e-mail for awhile now.  I thought it might be awkward to meet in person but I can honestly say that it didn't feel strange at all.  I feel like I've known most of them my entire life.  While I wish we didn't have the common tie that we do....I'm so lucky to have all of these people in my life. 

Top left:  Michelle is from New Jersey.  Her daughter, Quinn, has PMG.  Michelle is also on the board with me. We've been talking on the phone for almost two years.  It was so great to meet her in person.   Andrea lives in St. Louis.  Her daughter, Willow, also has MPPH (what are the chances of being in the same town 5 minutes away from each other???).  The three of us are the only ones who came kid-free. 
Top right:  Late night chatting in the lobby with some other moms. 
Bottom left:  Some of the members of the Board who were able to attend.
Right center:  This is Kristin and Cora.  Kristin and I have been chatting via e-mail for awhile now.  We connected through a YouTube video of Luke that was done by the Fetal Care Center shortly after Luke's birth. 

I wish I could put up ALL of the pictures I have.  I have some beautiful pictures of some beautiful kids...not sure if I can post those, so I won't.  I am really thankful to have taken part in this experience. 

OK, wish this momma luck on a plane with two under the weather boys!  Hope you're all enjoying your summer!