What? Do I have something on my face?
Molly and Livie enjoying a meal side by side :) They were passing food and utensils back and forth - adorable...
Oops. I was talking with "Dr. Mary" on Thursday (she has a daughter and an adopted son with OI and also is an ER doctor) and telling her how Molly has seemed fussy and complaining of pain. She informed me that we shouldn't be pushing the doses farther apart until we increase the dose she receives. Thank goodness she told us! I called the home infusion company immediately and they overnighted us her medication and the nurse squeezed us in to her schedule on Friday. We went and had her weighed (the medication is dosed based on body weight) and she weighed in at 22 lbs and 15 oz (10.4 kg). She has grown quite a lot. We need to start measuring her height to get a better sense of how much she has grown.
I am feeling quite frustrated that we aren't getting more guidance from the doctors in Omaha regarding her Pamidronate Infusions. I had the pediatrician's office fax all of her recent infusion results to Omaha for the new doctor, Dr. Lutz ("Lootz"), to look over. I received a phone call from someone named "Rose" from Omaha who said she looked over her lab results and her Calcium levels looked fine and that was all they were concerned about. This is not at all what I was hoping to get back from them. We will set up an appointment to see Dr. Lutz whenever we go out for Molly's surgery, but I was hoping he could be a bit more helpful in the meantime. Thanks goodness for Dr. Mary.
Molly has a cold that still seems to be hanging on and is running a little bit of a temperature. We were supposed to go to a birthday party, but opted not to in case there is more to her fever than just a cold.
She is starting to say some very funny things and is often talking in sentences. "Put the diaper on my body", and today she started saying "I disappear" (copying Jim) as she would hide around the corner - very cute.
Her spirits seemed better even half way through her infusion yesterday, but is continuing to be a bit whiny. It is hard to know how much of this is age and how much of this is because she doesn't feel well due to the cold and how much of this is due to bone pain.
Molly walked all around the hot tub yesterday and then took many steps without holding on to anything! She has started saying "I do it myself" a lot more and "Look at me Mommy" when she has done something on her own, so working on her independence is a new priority.
We went to an open house at a local preschool on Thursday night and really liked it. Molly loved seeing the classrooms and walked all around. Everything was at a great height. They even had these VERY tiny little table and chairs that were small enough for her to sit in all by herself, which she loved.
We are in the midst of trying to figure out what services will be available here in Wake county and what we will be responsible for on our own. There are some public preschools in the area, but from what I have gathered so far they are a special needs environment and not an inclusive environment, which is not acceptable to us. I am beginning the process of trying to find out about PT, OT, a 1:1 aide etc. and also which of these services would be able to travel to her private preschool.
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