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!

Winter Update

The past few months have been ones of change. We packed up all our stuff again and now reside in Southern Maryland. Moving is hard. Moving with kids is harder. Moving out of state with a disabled child should get you a medal. The long story short is that we've got doctors set up, they seem pretty good, and now I just need to remember to make follow up appointments.

Before we moved, we talked with the neurologists about starting the Ketogenic Diet with Lily, but it got put on hold because of the move. The new neurologist and dietician here thought it would be a great idea since Lily has maxed out on all of the seizure meds she's on. Essentially, there really aren't any choices left. They realized that the typical start to a Keto Diet, which includes a several day hospital stay for monitoring, would be really hard on us, so we were allowed to do a "slow start," which means it's going to take a lot longer to get to ketosis, but we can just take it easy and do everything from home. Because Lily has a g-tube, there's not much thinking involved for me- there's special Keto formula that we're mixing with her regular formula, slowly getting more Keto and less regular formula. It's been going ok, and I think there's been a slight reduction in seizures. She was having 8-10 a day and now it's usually 4-7. I have to check her blood glucose and ketone levels daily now. We had a setback about a two months ago when Lily seemed very lethargic all of a sudden. Since we had just increased the ratio and hypoglycemia is a big concern, I took her to the pediatrician, who determined that everything seemed fine after blood tests and examining her. I decreased the ratio again and decided to give her a little bit of diazepam, which we had from two years ago when she was crying in pain/tiredness, but that we hadn't really had to give since then. The next day she seemed a little better, and after continuing that regimen, was mostly back to herself by day three. I think that her muscles have been causing her pain again and so I've kept up the diazepam with the neurologists blessing, but it's not really a good long term fix. Next up? Botox.

The effect of the spasticity of Lily's muscles seems to be increasing as she ages. They say that Cerebral Palsy doesn't progress, the brain has been injured and it's not going to get worse, but the effects will increase and become more noticeable. We're seeing that happen. Botox is something that can hopefully help her muscles to relax, which would in turn help her to relax. There is nothing easy about having to decide what to subject your child to. Everything has a side effect. Nothing is a cure-all. Her doctor thinks that it is a good idea, so we're just waiting to be told when we can come in, as she has to be put under for the procedure to be done. She'll have it done in both arms and legs.

EEG: The neurologist actually got to see Lily have a seizure at one visit, a minor miracle as she tends to have them right before or after seeing a doctor. Without quite saying it, she implied that they were much worse than she thought they were, from what I described. She has requested another EEG to see what's going on, as she suspects Lily may be having more seizures that we're not even realizing she's having. Sometimes she just seems out of it, and that could be a seizure.

Orthopedics: Met with the doctor in August and he wasn't concerned about Lily's hip (though it's still on the way out). Said they wouldn't even think about doing surgery until she was older, (I think at least 5 or 6?), unless it became dislocated before then. That doctor is retiring and so I've got to set up with his replacement.

Overall, since July, Lily has been much more quiet and still. She used to move around a lot more, "talk" often, and do well with her piano and pop-up toys. It's strange to see the change and we're not sure why it's happening- if it's just from her muscles or the brain injury presenting itself in a different way or if there are more seizures that are happening. We were told that because her cerebrum was most affected but that her brainstem was fine, we'd see a change as she got older and switched from using her brainstem to needing to use her cerebrum. Aside from that, the doctors can't really tell us anything, because she "looks" fine and all her tests come back fine. It does appear from a couple posts in support groups that this is just kind of what happens. We miss our talkative and super smily Lily, though.

And if you made it this far, and you don't know already: Lily is going to be a big sister! We're expecting Baby #6 in August. Please keep us in your prayers. I really need to have a super boring pregnancy and no complications for delivery. Not sure yet whether I'm going to try for a VBAC or schedule a c-section. The practice that was recommended to me has both midwives and OBs, so I'm going to make sure I see all of them and get all opinions. I'll be in the hospital either way and will be having a consultation with the maternal-fetal doctors because of Lily and because I'm of "advanced maternal age" now.

How are we going to do this? I have no idea. Lily is getting taller and heavier everyday, especially because of the Keto diet. I'm not sure I'll even be able to get her wheelchair in and out of the van once my belly gets bigger- it's hard enough as it is. We'll all fit in our Odyssey, but we sure could use a 12 passenger van that would be more wheelchair and big family friendly. Unfortunately, our budget for that is $0.
I know that the first six weeks after delivery will be the hardest. I'm going to need full time help for at least four or five of those weeks- I'm not going to be able to pick up Lily at all. It is good to know that the other children will be able to help out with holding the new baby, though. We've never had older kids when we've had a new baby! When Lily was born we had a 5, 4, 2, and 1 year old. Now we'll have a 10, 9, 7, and 6 year old to help. I guess I've got until August to train them to do all I do!

Thank you for your continued prayers!

In April

Easter 2017

A trip to the Bay in September

A happy moment in December

Merry Christmas 2017