A good weekend and a Dr. visit

We had a good weekend. Emily was happy and well and we seemed to get a lot done -- and Diana and I even got to see a movie. :)

Sat morning we were visited by Julie Duin, a reporter for the Washington Times, and Joe Eddins, Chief Photographer for the Washington Times who are doing a story, of some sorts, of our lives and Spinal Muscular Atrophy. We talked for quite a while and Joe accompanied us to church the next day and then to our appointment this morning. Great people! I'll post a link to the article when it is all said and done.

We went to Hopkins this morning to meet with Dr. Crawford at the MDA clinic and get fitted for a TLSO and leg splints. Even though Emily has no scoliosis (HURRAY!! b/c almost all SMA kids do), we need a TLSO to best support her weight when we get her in a power chair. Dr. Crawford did not think that she needed a TLSO at first, but after some discussion we all agreed that it would provide good support while in that seated position. His main concern was that sometimes TLSO's can invite scoliosis b/c kids can get twisted in the clam-shell. I can totally see how that could happen, but we're talking about giving Emily better support while she is driving her chair, which is a negligible amount of time in the scheme of things.

Emily needs the leg splints to keep her feet/ankles from continuing to deform. Well, we didn't get all that we had expected out of the visit (measuring for braces), but we did meet the man that is going to make it happen. I don't recall his name right now, but we will be making another visit soon to get all measured up. :) More to come on that...

We also discussed the infusion therapy with Dr. Crawford and he confirmed my suspicion that nobody really knows what to do about bone density in SMA kids b/c no history has been gathered to compare against. Also, it doesn't seem that there is any definitive evidence showing that the therapy actually corrects the issues... at least not with SMA kids. Anyway, we also discussed the fact that there are very little risks associated with it, so what are the reasons for NOT going through with it if Aetna will pay?? We have heard from one family that has been advised against infusion therapy for bone density b/c, the opinion is, it can cause brittle bones, but I've found no supporting evidence for this as of yet. So, yet another area of SMA where there is very little experience. Dr. Swoboda, from Primary Children's in UT, has explained that these infusions are pretty standard for her SMA kids if their density is as bad as Emily's, so I think she has the most grounded opinion in the matter simply b/c she is seeing more SMA kids and density scans are a normal part of the studies going on at that hospital. :)

So anyway, we're not sure where the infusion stuff is going to go - but we are getting bracing soon (Lord Willing) and the visits today were very productive and good. It is great for us, a somewhat unique SMA I family who's child has beaten the odds, to "show off" Emily to Dr's that are top in their field -- makes us realize that we can have an affect on medicine if we are willing to put ourselves out there and stick up for our kids.

Peace <><


Anonymous said…
Hey Nate and family. Great post. Glad things are going well and you are showing those docs what can happen with a positive attitude and great care. You all have a very Merry Christmas!!!!!
Nancy Lee said…
Who knows all the benefits that can come when people persevere and do what they know is right!