Cailyn Reese, MD

So to start off here are some new photos with Cailyn's Halloween costumes.

Cailyn Reese, MD

AKA Dr. McCutie-Patootie

LIL' PUNKIN

This is NOT Cailyn's tongue.

And for all those nay-sayers I did finish carving my pumpkin.

So now some updates on Cailyn's latest progress. On Tuesday we had a follow-up with her neurologist at Johns Hopkins. We've been emailing regularly and giving him updates but he hadn't seen her in a month, she wasn't doing well early last week and he'll be out of the country soon so he wanted to catchup and talk about next steps.

First of all he was really surprised when he came out to the waiting room and it was just Cailyn and me. He asked where her entourage was because for any of her other appointments there's been anywhere from 2-4 adults squeezing into the exam room.

So here's where we stand with Dr. Hartman.

His main goal is to stop Cailyn's seizures so she can continue to develop. He believes she will probably always be below average in terms of development but he won't commit to what that actually means.

So Nov. 12 he wants her to go for new bloodwork to try and figure out better what metabolic disorder she has. That will test her liver functions, indirectly her pancreas as well as her amino and organic acids. For now he is going to hold off on another spinal tap to see what this round of bloodwork says.

He did say we should take her for a hearing test because she doesn't really startle or react to loud sounds. I told him I think she can hear but maybe it just doesn't really register for her to be afraid or jump. So soon I have to get her hearing tested.

I also explained to him that we have been tracking daily what she eats, how much, how many seizures and what medicine and the level of the medicine she was on. We did see a pattern in that the days she only had 3 bottles instead of 4 she had seizures in the double digits. He said he is actually about to release a study on mice that he just finished where they found that in a litter of mice the ones who only got 60% of their recommended calories had many more seizures than the mice that got 100% of their calories. He explained again that they generally just test concepts in animals and that there are major differences with how humans react but he was interested in what we had noticed. So now we are making sure, even if she isn't telling us she's hungry that we get 4 bottles in her as well as at least 2 food meals.

I also asked him about alternative medicine and if there was any that he recommended and he did not. I think he feels its hooey. I then told him about her trip to the cranio sacral therapist and how an hour after that treatment a light switch seemed to flip in her and she came back to life. He attributed it to the new meds she had started the day before and said we can agree to disagree. The only "alternative" thing he feels has some results is massage, especially for the constipation. So the past few days her seizures have been way less. Friday and Tuesday we didn't see any. Then Monday, Wednesday and so far today have all been days with under 4 seizures, which is way better than 11-20.

So we are now adding in Lamictal to the mix and she's still on Topamax and Keppra. All of these are for the seizures. She's also on Zantac for the reflux, a multi-vitamin and probiotics. Saturday was her last dose of steroids so I'm hoping her extremely full face and super chunky cheeks will go down in swelling soon. The hope is to take her off the Topamax and get her down to two seizure meds. Her neurologist said he'd prefer she's on two meds but if three is what it takes then that's what we'll have to do. I told him I understand the need for medicine but I am going to pursue the alternative medicine aspect to try to help lower some of her meds so she's not the drugged out zombie baby she's been. He said the zombie baby of late was not from the meds but from the extreme amount of seizures she was having with the infantile spasms. Now that those have gone down a bit she'll hopefully remain in better spirits.

Still smiling and kicking her arms and legs. I'll try to post some new video later as well as photos from the two Halloween parties she'll be attending. Cailyn's social calendar is very busy this week.