The Journey We Are On.....

Being a parent is hard work.... and it is even harder when you have an extra special little one and you have to make decisions that you'd never have thought you'd have to make for your child. For example, a good friend whose little one has the same disorder as Ethan is facing the decision about when and where to do the little one's cochlear implant surgery. This is a decision that we will most likely face someday too... We are struggling with the decision about what to do about an experimental medicine that might help Ethan, but it hasn't ever been studied in PBD kids before.... so they don't know if it will really help or not... not sure what the side effects could be (although the medicine itself typically has few minor side effects) in kids with PBD..... The medicine is so expensive that the nurse at our genetics office couldn't get the distributer to even tell her how much it cost.... So we have so much to think about, pray about, and decide. Last week,

So, I guess it was pretty obvious that Friday was a tough day. I have those from time to time, I think we all do. Friday afternoon Ethan had his one year pictures taken and he did amazing! It seems like it has been months since he smiled for the professional pictures. He did so well it was really hard to pick which pictures NOT to get. LOL :) I can't wait for them to come in! Today we spent the whole day together as a family. We ran errands in the afternoon - bank, the mall, Panera Bread for lunch, and then to Target before heading home. Ethan even sat in the shopping cart at Target like a "big boy." This is a very new thing for us - and while I still won't try putting him in the shopping cart if it is just him and I (if we have to run into a store just the two of us I always take the stroller) we are trying to do this when Jeff and I are together. Overall, I think Ethan enjoyes the new perspective, but since we have to make sure to put the belt around his chest i

It has been just over two weeks since we returned from the GFPD Family Conference. I think about the conference and the families I met in person all the time. I wish that the world was just that - full of families that understand each other and our very unique and special kids, but that just isn't reality... Reality is what I experienced this morning at MOPS (Mothers of Preschoolers). The majority of people in my life have healthy, typically developing children. I will admit that I had a little breakdown this morning at MOPS, because my mothering experience is very different than those with healthy, typically developing children. I shared with the moms at my table that sometimes I just want to stand up and scream at people and say, "GET OVER YOURSELF! YOUR KID IS HEALTHY!" but I don't. It wouldn't make me feel any better even if I did, I know that. When people talk about building their family or "oops" I want to roll my eyes, because we won't be ha

2011 GFPD Family & Scientific Conference opening video: http://youtu.be/nDgwSc0M8nQ Did you see Ethan? :) Where do I even begin??? It was an amazing and emotional couple of days, that is for sure. Families from the U.S., Canada and even Australia were in attendance and the top PBD doctors and researchers in the country presented as well as specialists in the fields of hearing loss, vision loss, and deaf-blind education. Ethan even got to see the top two PBD doctors in North America on Tuesday morning where a PBD clinic was held. There was so much information packed into a day and a half! It was great, and I'm glad they provided handouts, because it was information overload. Unfortunately, the bottom line is that there are still no cures for these disorders, and the only real "treatments" are treating symptoms as they appear - therapies, feeding tube if needed, etc. The researchers are continuing to work on possible treatments and have a few mouse models that the