Endo and hair cuts

Another appointment today.  Today was meeting with the endocrinologist, Dr. Zimacas.  It's been about 3 years since we've seen him and about 2 years or so since the boys had their last Pamindronate infusion for bone density.  We didn't have the worst experiences with the Pamidronate, but it certainly wasn't smooth sailing.  So I kind of dropped the ball on them.  One of the main reasons I stopped was that when the boys had their bone scans to check their density, the results came back as unreadable.  I can't really understand that because so many other SMA kids get scans done and their results are readable.  Dr. Z said because of their contractures and Casey's rods, that it's next to impossible to get good results, period.  And, that there is a wide margin for error each time so it's very hard to see true improvements.  Anyway, I'm not sure if I agree with that part.  I would like to try to get baselines on the boys some time but I won't push for it at this time.

Dr. Z spent a lot of time talking about the thoughts on how Pamindronate works in increasing bone density scores in certain populations of people...I won't bore you with that here.  He also acknowledged my concerns about if this will help long term and if the density increases we may see are truly increases in density that will help prevent fractures in the future.

He also made sure to let me know that this is not a 'standard practice' and it's totally up to us as to whether we want to proceed or not.  So if we decide NOT to do it, he would be fine with it.  He said if we had opted not to do Vitamin D--he would convince us and show us the proven data on Vitamin D and bone health.  But since this isn't proven, he understands that we are the ones to make the choice to proceed or not.

If we do go ahead, he really wants us to make the commitment to do it every 3 or 4 months or so, two days in a row (about half a day each).  It would include them getting IVs each time.  That is one of my biggest fears.  They are hard sticks and it's such a stressful thing for them and for us.  Sigh.  The first time we had them done Colin's IV infiltrated over night.  Ugh.  The second time we saved the IV overnight but then it wouldn't draw so it had to be redone.  They also had some flu-like side effects but I understand that each time they are administered the side effects become less.

So, at this moment I am leaning towards doing them.  I will talk with Gene some more and then decide.  If we do go ahead, I'd like to get two doses in--maybe June and October and then stay away from the hospital until spring.

He examined the boys and found them to be progressing puberty-wise.  Colin a little slower than Casey :)

Afterwards we decided to play hookey from school.  I had been planning on dropping Casey off at school and having Priscilla come for Colin but we decided to get haircuts instead.  We called Gene and he said he'd meet us at Garry's Barber Shop to help.

The boys had the same hair cutters as they had last time so they were pretty efficient and did a good job.  Gene's friend, Lori, started goading Gene to get his hair cut (it's been a LONG time) and Casey chimed in, so he folded and let her cut his hair and trim his beard. 

Yes, you are seeing a miracle...Gene is getting his hair cut (and his beard/mustache cut and trimmed)!