A Nice Visit in Maine, but Broke her Leg Yesterday

We have been in Maine since August 2nd visiting my family and enjoying the weather and fresh air. We have been busy: visiting family, playing at "Mimi and Poppy's", going to the park, visiting a petting zoo, and exploring the coast of Maine via my parents 32+ year old boat :)

Molly has had a blast. We were out yesterday on the boat enjoying a beautiful day exploring a couple of islands. We stopped at one to have lunch, but I wasn't comfortable getting stranded by the tide (in case we needed to get Molly back if she got hurt) so we headed off in search of another nice spot. The criteria for a good spot is very different than the typical so it took us a little while to find something appropriate for her and still fun. We were in the water walking to explore and she slipped and fell and I knew right away that something was cracked/broken. She calmed down relatively quickly and was happy as long as she wasn't moving and nobody was moving/carrying her. We stayed on the beach and looked for pretty rocks and shells for a good 20 minutes while she settled down and it was a good way to keep her distracted. I found a star fish and hermit-crab (my first), which were both perfect distractions. Fortunately, I had remembered her splinting material and was able to splint the leg to get her comfortable before carrying her to the boat and for the ride back to the harbor. We were very close to shore so the ride back was a non-event.

Today has been a long day, but manageable. I was able to put her in the kiddie pool without her splint on, which was a nice discovery. She didn't move much and winced when she did certain things - like trying to splash with both arms made her leg hurt). I am guessing it is a femur fracture based on what she can and can't do. We will wait another few days and see how she is doing before putting her through another x-ray.

We are heading back to NC tomorrow and feeling excited to be back home with Jim (and Howie). We have been here for over 2 weeks and have had such a good time. There is nothing like Maine in August - make the trip if you haven't :). Molly tried lobster for the first time and LOVES it. My Dad has a few lobster traps, so we were able to give it to her a couple of times for "free".

I contacted Montreal regarding Molly's Pamidronate and we are going to go back to give her the infusions every 3 months due to her increased pain and irritability in the past 3 weeks. Here's hoping it makes a difference.

We also ordered Molly her manual wheelchair today that will be size appropriate for school, and are VERY excited for her to get it. I think it will make a big difference in her independent mobility, especially when she has a broken leg.

We fly out tomorrow from Boston and will have to head down first thing in the morning to be sure we are at the airport nice and early. Signing off for the night. Thankfully Molly seems to be sleeping OK with Motrin and a splint (and a room air conditioner - lucky girl).

Infusion #14

Molly climbed inside of Tripp's laundry basket and we just had to take a picture...

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.