Yes! Well, at least for a year. We are truly in uncharted territories. Pamidronate infusions are being used more and more frequently with those with neuro muscular diseases to hopefully increase bone density thus keeping fractures at bay. That's the hope. But there really aren't a lot of studies out there on this, especially with kids like the boys with SMA. And, neither boy has had a lot of luck with their bone scans, because of their contractures which make it hard to position them for the scans. And, Casey has rods in his back which make that whole area unusable to scan. We can see some Anyway, my point is, there's no hard evidence that will tell us how much these infusions have helped and no studies out there that will show us that a second round will improve their density more. So for now, I'm putting it out of my mind, or at least in a dark corner :) and I won't take it out again until I hear that there is a new study out there that will give us a clue as to what direction to take. AND, hopefully, the boys will not experience a fracture.
Both boys had their IVs placed with one pick. Both in their left arms. Casey's on the wrist and Colin's in the antecubital. We actually were done with picks and blood draws early...and then the infusion bay wasn't ready for us so there was a wait time which did not make me happy. We could have been on our way home earlier than normal but it didn't happen.
Got settled into the bays. Colin stayed in his chair. Got Casey out onto the bed. He was on his side that makes it harder to position his arm/thumb to use his DynaVox but somehow Nancy got him set up. It still didn't help much. He was pretty noisy and kept everyone on their toes doing this and that for him. Jenny, the child life specialist spent a lot of time with him and a lot of time finding special movies for him. They both actually like this as it's kind of become their 'thing.' I know Casey will find himself missing her since we're done with our long days at the hospital.
Colin and Karyna passed the time happily watching Spider Man 3. Once in a while Colin would complain about his arm and we'd move him around but the IV would occlude easily so it was a dance of getting him comfy and not occluding the IV.
Everything seemed to go so slowly today. I went down to the coffee kiosk area and got some lunch and an iced tea. Nancy and I went down to the gift shop and I got a candy bar.
Finally, Dr. Zimacus came for his visit. They hadn't drawn for Casey's testosterone in the Comfort Zone so he had that done. He said he'd call with his results. Updated him a bit. Not much new. He did his "thing" where he checks his privates. Oh, joy. Seems like all is okay and he can still find his testicles. This seem to be progressing ever so slowly in the puberty department but we'll find out more when we get his testosterone levels back. We've definitely decided NOT to induce puberty with hormones.
He checked out Colin, too. Couldn't really feel his testicles but since he was in his chair it was awkward. I told him we had a plan to see Dr. Sartorelli (surgery) and asked about an ultrasound. He tried to get us in today but couldn't and we wouldn't have been able to stay anyway. We'll see if they can schedule us before our appointment in mid August.
That was that. Casey started to have a meltdown. He definitely has a harder time with the med than Colin. He seems to feel a bit cruddy and grumpy by the end. We got everything together and headed downstairs. Pulled out at about 3:35 and were home just before 4PM. Long day.
Gene had gone into work for a pizza party and then come home to work so he could be here to help us unload and unpack and get the boys settled. Nurse Lauren was working the evening for the first time since camp. She knew we had infusions so she brought me and iced coffee from DD :)
Settled into the living room and Lauren wii with the boys. Colin was pretty much himself. Casey was a little woozy :)
And that was our day. Headed into bed a little earlier than usual. Staci read a quick book and then they were cooked.
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