Happily ever after,

it's complicated, we had pediatrician A in a practice with 3 other docs, we also liked pediatrician B in the practice. Then BB fractured his femur, and we decided that A really had dropped the ball and left the practice for pediatrician C. C moved to a bigger practice with unhelpful (a.k.a. rude) staff. Took BB back to pediatrician B (who has the best nurses and staff ever).

So, late Saturday, BB complains of ear pain, serious ear pain. I call the pediatrician's service and say that we will need to bring him in for Sunday "semi-emergency" visit for the ear. They call back Sunday morning and say "you can see A at 9:30." I say "fine, I'm sure he can look at the ear and take care of BB on this."

Mind you, it's been over 3 years since we've seen A. We usually work it so that we only see B.

Believe it, the first thing A says to me when he walks in is "are you still mad at me?" Things got worse. Would have been even worse if BB had not been in the tiny little exam room (but isn't that part of the problem, discussing failure in care over 3 years ago in front of a 7-year old . . .).

I call B on Monday and say that "A was unprofessional . . ." B keeps his cards close to the vest so I have no idea if the whole practice is about to fire us.

I call back on Tuesday and say that BB needs the ear checked again because it's no better. Got an appointment with B (good sign). See B and he is normal and we do not discuss A, because you should not discuss these things in front of a 7-year old patient, right. Ask B if he wants to re-check the ear in a week or so. "Yes."

Pediatrician B really is our golden doctor. And next time he is unavailable, say in 3 years from now, I will just take BB to urgent care or something. Never to waste another minute on pediatrician A who apparently is more concerned about himself than BB anyway.

I could just leave the practice, again. But B really "gets" the whole situation and truly cares about BB, and his nurses and staff are awesome. I have these dreams of the future where pediatrician B and I get to have a big fat high-5 when BB makes it to adulthood in pretty much one piece and moves on from pediatric practice. We're a "BB" team.

Today's Must Do. HR 3856

Ask your representative to co-sponsor or at the least support HR 3856 on Bone Health. And to include fibrous dysplasia by name.

Go Rep. Shelley Berkley!
Go Rep. Michael Burgess!

Dr. Bill Cassidy of Louisiana don't let us down.

Rare Disease Day 2010, partners needed.

Hoping to persuade local science museum to help with a Rare Disease Day project tied in with science education like DNA Day, and this (even more information).

Defeet/ed

BB slipped in his socks. No break that we can see, just hip pain. Time for some just right slippers since socks are so out. From now on when he is doing great I will refer to it as "news-that-must-not-be-named."

Nice.

BB walked to the swings in the backyard for the first time in almost a year yesterday. And today. The trick is being excited for the walking but not end all be all excited because these things tend to be fleeting over here. Sweet/bittersweet.

Lovely Design Address File No. 952, for a worthy cause (BB's bones).

I love my Lovely Design Address File, a lot. But I love research for better bones for BB even more. So, I am putting my absolutely perfect not yet used (because I am chicken to start marking up the perfect little cards) Address File No. 952 on the proverbial table. If you donate to my cause, see Scream for Billy, as part of America's Giving Challenge, I will put your name in the hat for a random drawing, prize is No. 952.

xo,

Catherine

P.S. Catch, there is always a catch, no drawing unless the number of donors is 1,500 or more. It's about people, not money (okay a little about money too) . . . I need lots of people giving small donations ($10) each day until Nov. 6. Please donate and ask others to donate too.

1/2 Cast.

We are at half cast now . . . BB's arm looks better but still needs a splint for 2 weeks. Slow healing, I've got to think the H1N1 had to slow the bone healing?

THOMAS is so much fun.

Current/proposed legislation with good advocacy efforts for:

Mitochondrial Disease Funding :: http://www.umdf.org/siteapps/advocacy/ActionItem.aspx?c=dnJEKLNqFoG&b=4489051&aid=12448

SMA :: http://www.fightsma.org/blog/sma-families/hr-2149-the-sma-treatment-acceleration-act-introduced-in-house-of-representatives.html

Brain Tumor Prevention :: http://btan.org/index.php/2009/03/16/hr-653-s305-the-national-childhood-brain-tumor-prevention-network-act/

Celiac :: http://www.celiaccentral.org/Get-Involved/Advocacy-Corner/207/

Dystonia :: http://dmrfinsights.blogspot.com/search?q=res+134

Fragile X :: http://www.fragilex.org/FX_Resolution_ACTION_ALERT.pdf

Pulmonary Fibrosis :: http://www.coalitionforpf.org/cpf_events_detailes.php?id=397

Undiagnosed Disease :: http://www.inspire.com/groups/rare-disease/discussion/undiagnosed-prop-legislation-h-r-2538-undiagnosed-diseases-registry/

Shows that small groups can do things. Next up MAS/FD.

Hello Lollie.

Today we welcome a new member to our family, Lollie. A 5-pound fluff ball in gray and white stripes. All Ella's. Love at first sight.

Bones update.

I hate MAS/FD. And telling BB's teacher not to cry in front of him when he falls.