February Update

Several months ago Lily was seen by the orthopedic doctor for a follow up regarding her left hip, which is slowly making its way further from her hip socket. The doctor was very concerned and wanted us to see the orthopedic surgeon in February for a consultation. She was pretty sure that Lily was going to need surgery… a surgery that involves cutting the top of the femur and reattaching it with bolts and things, to get it to fit into the hip socket. This has weighed heavy on my heart since then and I could barely even think about it without starting to panic. 

We met with the orthopedic surgeon this past Monday. He walked in the door and the first thing he said was “We treat people, not x-rays!” Good sign. After examining Lily, he made a comment about not quite understanding what the other doctor was talking about- that Lily seems to be doing pretty well. Then he said that she wouldn’t need surgery. I wasn’t prepared for that and waiting a second, hoping I actually heard him say that. He said it again! She wouldn’t need surgery, at least at this point in time. I told him that I really liked him. What an enormous relief! He even said not to come back in 4 months- come back in 6 (and see him, not the other doctor)! 

A day I was dreading turned into a much better day. We’re going to keep working on getting her femur to do what it’s supposed to by using her stander and stretching her legs. 

Since Lily turned 3, she no longer qualifies for the early intervention services she was receiving. We got a certificate congratulating her (on turning 3?) and a book about when to call the doctor if we think that she’s delayed in not doing things three year olds do. The book went in the trash. I get that they send those to everyone, but when her paperwork says “presents at 3-5 months” over and over again AND they know us…we probably could’ve done without another reminder. At any rate, that means that she’s now a public school student. She’s not going to school in any sort of way, but that’s how she’s now receiving therapy services. There was debate at first about whether we’d have to go to the school for the therapy, but because of her seizures and ridiculous logistics, they’re coming to us. Lily was getting an hour each of physical and occupational therapy every week with the early intervention, but now that she’s been transferred to the school system, she’s going to be getting 20 MINUTES of physical therapy a week and 30 MINUTES of music therapy twice a month. I just don’t even totally know what to do with that. (But she really likes the music therapy, as do the other kids.) 

Lily’s been been pretty healthy aside from the first week in January when she looked like this for a few days while she battled double ear infections and what could have been the start of pneumonia. 

Then the other week when she had a weird seizure in the morning which prompted emergency meds and an ER visit, which turned into a couple of days of her being pretty out of it. That’s all passed now and hopefully she can stay away from whatever else is out there. 

We also saw her neurologist last month and since she’s at the upper level of all the seizure meds with very little improvement, we were told to look into the Keto Diet. We’ve got their first available appointment- at the end of May. Sigh. 

For now we’re just keeping on. 

This is her now:

-Laura