In a nutshell

I am really not that great at updating, am I?  So I will just try to cram it all in with one post.  Sorry if it's disorganized.  Seth is doing pretty well.  We are definitely seeing some slowing down...if only Ataluren would get approved already!  I was reading a post on the PPMD message boards and some guy was saying that he didn't think they would "risk" the medication for Duchenne since the data was not as good as they wanted, and would instead focus on the cystic fibrosis application of it instead, since maybe more money would be in that.  Of course that guy has no knowledge and it's just his opinion, but it's still discouraging...hopefully I will get to talk to Pat Furlong when she's in town next month and find out the REAL scoop.

We decided to take Seth to the MDA clinic in Cincinatti-Dr. Wong is there, and she is one of the best, from what we hear.  We may not see HER, but I'm sure whoever else is there is good too.  The main reason, besides their reputation, is that it's just getting really frustrating trying to schedule appointments with so many different specialists here, and if you go there, you see them all, all in one day.  It'll be a long day, but then it's all done for the year.  The thing that finally did me in was the pulmonary office.  Besides the fact that it takes seven months from the time of the referral to the time of the actual appointment...they are just not at all accomodating.  I called with what I thought was a good notice (three months) to see if we could maybe reschedule for a day we would already be in town to see Dr. Chadehumbe.  Nope.  She said that if we cancelled, we would go to the bottom of the list.  I said, "so...we go to the bottom of the list, wait for YOU to call us, then we have to take what ever appointment you give us?"  And she said, "yes."  Basically they will not work with you one iota to try to make the appointment work for you at all.  And they can't blame it on their scheduling system anymore, because the one they have now allows you to schedule whenever you want.  I have talked to other people about it and lots of people have problems with that office.  I plan to have a word with the office manager when I call to cancel our appointment for real. 

We have an appointment in a few weeks for a wheelchair evaluation.  He doesn't need one full time by any means, but it would be nice to have one for when we go places.  We met up with a bunch of families (I don't think I posted about that?) about a month ago with boys all around the same age as Seth, and everyone had something, whether a chair, or a big stroller type thing, or a scooter to use for that purpose.  Plus, our insurance only will cover DME every three years, so it's a good time to get something right now.  It will be just a regular wheelchair but will have power assist wheels-so he can push the wheels and they have motors in them that give him more force.  It will be nice to have, but it's still a big step that I'm not sure I'm ready for. 

I think that's about it...school is going well for both kids, they've started their faith formation (previously known as catechism) classes for the year...Anna is excited because her friend Maddie is in her class, so that's fun-they go to different schools this year so don't get to see each other much.  I will try to keep this more updated with regular day to day stuff.  I was talking to this other family about how the course of this disease is not such that things change super fast (well, too fast for my taste, but you know what I mean).  He's usually going to be about the same from one week to the next, so there aren't always a lot of updates to be had with regards to his health...so I will try to post other things. :)