Molly is doing very well and seems to be getting better with each day. Today for the first time she transitioned from sitting to crawling on her belly without any assistance - a big milestone for us! She also started trying to put some weight onto her left leg (her good leg) while on all fours. She has been crawling with her left leg and dragging her right to get herself a few feet at a time, but has been getting rather frustrated by her difficulty moving. She seems to be doing better and better and I'm sure will be back to crawling in no time.
They came to do her infusion here at the house on Sunday, but the orders weren't right, so we had to postpone. They came and flushed her port on Tuesday for the first time and that also went well. She has to have her port (an IV access that is a "button" under the skin) flushed every four weeks to prevent a clot from blocking it off. We somehow lost track of time and it had been 6 weeks by the time the nurse came. I was anxious to see how it went and was relieved when it went so well. The nurse said it was well placed and easy to access :). In the next several months she will train me on how to flush it and then I will be able to do this part on my own.
I emailed Dr. Plotkin, the endocrinologist in Omaha, to clarify Molly's Pamidronate orders since they weren't correct. He wrote back with the information we needed and also shared that he is moving to the east coast and will no longer be seeing OI patients. We are CRUSHED to say the least. It has been an emotional few days trying to think about who we will turn to now when questions and complications arise. He is an AMAZING and very bright doctor. He is wonderful to work with and clearly has his patients best interest in mind. We had been searching for a doctor that we respected and could count on for good advice regarding Molly's overall care and finally found that in Dr. Plotkin. The protocol he has designed seems to be a perfect fit for Molly and now we are not sure how to proceed. He is the only one in the country that uses this protocol and we are not sure if someone else is going to adopt it or not.
There are only 3 centers of excellence for OI care in all of North America: Omaha, Maryland (Kennedy Krieger), and Montreal Shriner's. We have already gone to KKI (Kennedy Krieger Institute in Maryland) and did not feel it was a good match for us. We hhttp://www.blogger.com/img/gl.link.gifave started the application process for Montreal, but put it on hold once we found we were happy with the care in Omaha. I think we will now have to reapply to Montreal, but they require that you see a local Shriner's Hospital first and do not accept all OI applicants. As of March we finally felt like we had someone to turn to when issues came up. I am overwhelmed to be losing this short-lived peace of mind.
The clinic in Omaha is going to continue to run, so we will at least still have Dr. Esposito (the surgeon) for that aspect of Molly's care. Thank goodness for that! I can't imagine having a better experience with any doctor than we had with Dr. Esposito before, during and after Molly's surgery.
The Home Infusion company says that they have new and corrected orders for Molly's Pamidronate, so we have tentatively scheduled Molly's infusion for next Friday. I am hopeful that things will go smoothly and that this will be a much better option for all of us than going to the hospital over night every 8 weeks.
New Videos:
Molly uses Maracas for the first time CLICK HERE
Molly draws a picture CLICK HERE
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