Hip Saga

Monday before last, Lily started to fuss and cry while having her dinner. This is not usual and we were immediately worried about her hips which we've been watching. We decided to take her to the ER here in town where they said that her hips didn't FEEL dislocated but they did an x-ray and the hips didn't look right to the doctors. They called Children's Hospital in DC, (we go to Georgetown, so I'm not sure why they decided Children's), and they said we'd need to be transported by ambulance there to see what was going on. Lily slept through it all and we got to Children's at 4 am. By 6 am we were being discharged. The (very new) orthopedic resident I talked to told me that the ER only told him that there was a 4 year old with dislocated hips, which is what prompted the ambulance. They never told him that she has Cerebral Palsy. Oh, well. I was to follow up with our orthopedic doctor, (who has been doing this for I'm sure longer than I've been alive), to see what was next.

We did that this week on Tuesday. He had another x-ray done because the one from the ER wasn't in the system and I didn't think to take the extra CD that the ER sent to Children's. He confirmed that Lily's hips aren't dislocated -yet- but they're still on the way...and not where they should be at any rate. He's going to talk with the orthopedic doctor who does the surgeries now and get back with us next week. In the meantime we're just supposed to keep her comfortable with Ibuprofen and Valium. That's fine for the short term, but I'd rather get the surgery done and out of the way before the new baby comes and life is even more chaotic than it is now. It would be ideal to have it during Spring Break, the week after Easter, so that Danny didn't have to take any more time off.

Usually the femur bends into the hip socket like this. Crawling. standing, and walking make it do this.

Because Lily can't crawl, stand, or walk, and because her muscles are tight and pulling on her femur, her hips look like this, facing the wrong way and bending outward, away from the hip socket. This is what caused the panic and confusion in the ER from doctors not used to dealing with Cerebral Palsy.

Lily is sometimes okay while sitting in her wheelchair, but we can tell it's not comfortable for her. She keeps her right leg up- you try sitting with your leg lifted for longer than 10 minutes. She just can't relax it enough. We've been propping her up on the couch to have her food and that seems to be alright for her, as long as she's not putting too much pressure on her right side. It works for now, but again, we've got to be able to get back to real life and ease Lily's pain soon.

On Wednesday we went back to DC for her nutrition and neurology appointments. We decided to decrease her calories a little bit because she's gaining weight pretty quickly since being on the Keto diet. This also means that the Keto ratio is increasing, getting closer to ketosis and hopefully seeing a decrease in seizures.

Lily has to have blood work done every few months to check the level of one of her seizure medicines. At the blood draw last week she was dramatically lower in the level than she had been previously. Because of weight gain and the Keto diet helping her to metabolize her food and medicine quicker, it was determined that we should increase the level of that medicine and then decrease and eliminate one of the others that never seemed to really do anything. After we drop that one, we'll try another one. That'll be medicine #6 that we will have tried. (She's currently on 3, plus the Valium, which is technically a lower dose of her emergency seizure medicine but also acts to help her muscles reduce tension). We're on day 3 of the increase, (we're adding 1 ml in the morning for a week and then another 1 ml in the evening), and if I dare say it, I think it's helping. She's even moving around a bit more today than she has been. So that's good!

We're heading back to DC on Monday for an EEG to see what's going on when Lily is NOT having seizures, but I do hope that she has one or two while we're there to see what the seizures are like now compared to her last one over 2 years ago, since they seem to be evolving a little.

I'm getting pretty good at driving in DC because of all these appointments. We've got Botox scheduled for the 23rd and we'll have to get to DC somehow (miraculously) in morning rush hour traffic before 8 am. That one's going to be tough. Almost considering getting a hotel closer so that we don't have to leave at 5:30, or earlier. The neurologist thinks that the Botox will help with Lily's hips, since part of the problem is that the spasticity of her muscles is what is contributing to her femurs being pulled out.

Now you're pretty well caught up. One big help to all this hip mess is that Lily doesn't mind her car seat, or at least she seems better in it than in her other chairs. At least we've got that going for us!