Sleep clinic appointment

Karli had her appointment yesterday with the sleep clinic. We had all hoped that at this appointment we would go over her compliance and how many hours she was wearing the Cpap each night. Well, as you know it's just not happening at all right now so instead we talked about how we could help her be more comfortable with it. We're waiting on a call to schedule the de-sensitization therapy and got a phone number for a behavior specialist in case the therapy doesn't work. We also got the results of her blood work we had drawn last week and her ferritin (the long term iron storage) levels are still rising which is a good thing. Low ferritin levels have been found to contribute to "restless leg". The sleep clinic wants her ferritin at 50 (I don't remember at the moment what the unit of measurement is) and hers is currently at 26. This is a huge improvement considering last year at this time it was at 4. We tried staight iron supplements and she only took those for 2 days before she figured out how nasty the stuff was. Can't say I blame her, yuck! So, we've just been giving her a children's multivitamin with as much iron in it as I could find. That's been working for several months now, so we'll just keep at it. We're supposed to check the ferritin again every three months so as long as it keeps rising, we'll be doing good.

The worst part of the day was when Piglet, or as Karli says, "Pliget" went missing. :( We're all so sad. As soon as we figured out Piglet was gone, I ran back into the hospital and retraced our steps, but no luck. It's heartbreaking to have to tell her repeatedly that we don't have Piglet anymore. I'm having a hard time finding the same one on the Disney website, so we're headed to the mall on Saturday to try and find it. Auntie Kimberly & Uncle Steve were so sweet to get it for her one of the times we visited them and Joel and now it's gone. :(