Tuesday, January 23, 2018

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