Included in this Report:
* Film developing info
* What I learned from looking at MRIs
* What I learned from watching the kids


FILM STUFF
As I type this, three more rolls of film are being developed at the one-hour photo place. In the meantime I happened across this site for Kodak and decided to give it a try, so I'm having one roll developed at Eckerd. This site has a free coupon online to print out to try out this service, so I figured why not? They post your photos online and you can view them there, and download them, and email them to people, and also let other people view them there. You also get regular prints too. If it works, on Sunday I will send you all instructions of how to view this roll of film. That will save me the time of posting them. Anyway below is the link to the site so you can see what it is if you are interested.   Click here: Kodak Photonet online


WHAT I LEARNED FROM MRIs
On Monday night, there were only a few of us left. I dearly wish I'd thought to do this earlier in the weekend when more people were around, but I asked Sally and Kelly to show me Katie and Chris' MRIs. We all (Bob and Jon included) sat around and compared them. It was fascinating. If any of you have not returned your MRIs to the hospital or wherever yet, I would LOVE for you to make a decent quality photocopy or scan of a couple of different views (specifically the view halfway through the brain looking from the top of the head would be nice) and either snail mail them or email them to me. The only other MRI I saw was Samantha's. Samantha and Julia both have Miller-Dieker and their MRIs were quite similar. I'll try here to do a decent comparison of Julia's, Katie's and Chris' MRIs...

Julia has Miller-Dieker syndrome, Liss Type 1 grade 1. This is pretty much a total lack of gyri. If you look at the view looking from the top of her head, halfway through the brain, you see a big wide open fluid-filled area (ventricle) in the middle of each half. There is a thin brain going around the outside with a sort of figure 8 shape. You can see NO bumps, ridges, etc on the outside of the brain except in one little tiny area (and that is only in one picture). I think it would be obvious to just about anyone looking at this picture that there is something drastically wrong, even if you didn't have a "normal" one to compare it to...because you were taught in basic science in high school what a brain is supposed to look like and this isn't it. If you want to see this picture, Jon has posted it and if you go to the Lissencephaly Launch Pad (http://homepage.ntlworld.com/foliot/liss) you can see it. One of the most striking things about Julia's MRI is really how little brain matter there really is. It is amazing she can do everything she does!! The body is amazing!

Katie has ILS, I believe type 4a (correct me, Sally and Jon). The same MRI view as the one of Julia's looks very different. The first thing I noticed was no enlarged venticles. The brain fills up most of the space. Her fissures (sulci) of the bumps went quite deep into the brain (I think that is a good thing). There were several bumps and ridges, although now that I know the things I know, they were wider and bigger than a "normal" brain would be. But the outside surface is definitely bumpy and ridgey to some degree. There is much more brain matter there than in Julia's.

Chris was originally diagnosed with MDS, but got a new diagnosis from Dr. Dobyns, of "borderline MDS/ILS classical lissencephaly type 1 grade 3a with thinning of the corpus collosum with non comminicating hydrocephalus". Whew, what a mouthful. What that means, is that he exhibits some of the typical facial features of Miller-Dieker syndrome but has more gyri than a MDS kid would normally have. The hydrocephalus part is why he has a shunt, which is unusual for MDS and ILS (more common in WWS) but not unheard of. The non comminicating part means there is a blockage causing the hydrocephalus. Anyway the main point is that Dr. Dobyns feels he is "borderline" between ILS and MDS, exhibiting some features of both. And when you compare his MRI to Katie (who has classical ILS) and Julia (who has typical MDS) you can see why. Chris has the large ventricles like Julia's. That is the first thing I noticed since it is the first thing I see in Julia's. But he has bumps and ridges similar to Katie. The fissures don't go as deep as Katies, but there are definitely some there. Jon and Kelly might be able to tell you in more detail if the bumps and ridges are more in the front or back of Chris and Katie, but I don't particularly remember that.

So, what I learned from MRI's is that it is amazing how different the brains can be, with a lot of the same outward characteristics (developmental delay, seizures, etc). And I got a better understanding of why there are so many different diagnoses out there!!! The docs are still learning!! Hmmm...I suspect they are making up most of it as they go along!!

WHAT I LEARNED FROM THE KIDS
Boy, did I learn lots from the kids. It is truly amazing how similar some of our kids are. And I don't just mean appearances, although many of them could pass for siblings. They make a lot of the same movements. I mean the same arm movements, facial movements, etc. Zach and Claudie in particular both did the same things with their hands a lot, and their smiles are very similar too. Several of the kids who are roughly the same age (Kayla, Zach, Claudie) all like to look at the back of their hands a lot. They stick their arms out and kind of swing them back and forth looking at their back of their hand. Also several of them rub their mouths the same, with the back of the hand. Kayla and Savannah both love to play patty cakes, and several of the kids can clap the same. The babies all make the same noises!! I heard Samantha making happy noises several times and thought it was Julia. Also even the choking and gagging sounds the same!! I had never heard any other baby make those sounds before this weekend, and several times panicked because I thought it was Julia when it wasn't. Even some of the older kids made the same gagging sound that Julia does. Strangers often think Julia's happy noises are crying, but I know they are happy noises!! And I heard Katie doing the same thing!!

There was an amazing range of abilities there. There were several of the kids who could walk and talk. Stephanie (10 or 11 maybe? Not a looper but might be soon), Annie (cute redhead, 8 or 9 years old, not a looper), and of course Cayse (ooh what a cutie and SMART SMART!!). I'll add one non-looper funny event to Linda's list, and that is Stephanie stealing empty wheelchairs!!! She would just walk off pushing them! She got all the way into the elevator twice with different people's wheelchairs. What a riot!

One thing I learned wasn't from the liss kids but from the siblings. Every sibling loves their brothers and sisters like crazy!! I saw many of them helping out (particularly Stephanie's big sister who was 16 but way more mature than that) and giving their siblings lots of kisses and showing them the balloons. It was very sweet.

Speaking of balloons, it was fun to see all the kids watching the balloons and fans and things. The decorators did such a great job to decorate the place in a way the kids could enjoy!! Shiny things all over!!

Another thing I learned is that each and every child is loved unconditionally by their parents and caregivers, and they know it!! I saw Zach gag and throw up, and then sort of give Nancy this "I'm sorry, but I feel a lot better" look that Julia uses too! Seeing the mothers and fathers (and sisters and brothers, aunts, etc) interacting with the children was amazing. Bob would have brought all the little girls back with him if anyone had let him! Kayla and Claudie especially, I think. Kayla played a game with Bob, where she would be looking away and would ooh, and then if he oohed back she would look at him and smile. It was so cute! And Bob fed Claudie her supper one night and was hooked as a "Claudie admirer" for life. Lisa was adorable with John David, who is a cutie patootie by the way for those of you who didn't get to meet him. I have a picture of him in the roll I'm picking up this afternoon, I think. And Teddy rode around on his daddy's shoulders and smiled and smiled. I know we all confused all the non-loopers a lot, because we were hardly ever holding our OWN kids. Angie in particular just stole Joey Eckberg and I'm not sure she ever gave him back!! (Renee, have you checked?). And Daris Bloor (from Canada, 10 or 11 years old, his mom is Deb, not a looper) had a caregiver whose name has slipped my mind, but was just great with him. Everyone thought this guy was his dad or his big brother, but he isn't! He's worked with Daris for over three years and I saw him holding Daris a lot just for the fun of it, not because it was expected of him. Dianna Fitzgerald's son Gary is only 15, but was there in an official capacity as a security person and overall helper and I thought he was great, very mature and helpful. And Kayla's sister (Brianna?) and auntie Geneva played and played with kayla and all the kids. The siblings cope in their own way I guess, and it was great to see all the love for all of the kids.

Okay, now I'm getting teary. I'll stop for now, run out and pick up my developed film, and when I get back maybe I'll have time to finally type up some stuff about the talks.

Reporting from the slightly-cooler-than-yesterday Northeast,
Sandy "Scoop" Merritt, official loop reporter and mom to Julia age 18 months
with MDS

UP