Wednesday, March 25, 2009

A heavy heart.

Back when Lily was 1st diagnosed with IS, I found the Infantile Spasms Yahoo Group and of course immediately joined and read all of the posts, every day. I learned so much from this group, and continue to learn from them even now. There is a group of 8-10 families that have kids around the same age as Lily, who all joined the group around the same time, and many still battle seizures & disability today. I follow their blogs, email with the mothers, and consider them part of my, and Lily's, IS Family.

And Monday we lost a beloved member of our family. Jordan Rowe, a gorgeous girl with eyes that won't quit, and hair the color of the sun passed away unexpectedly in her sleep.

Her mother, Leslie, is the most amazing advocate for her children, Jordan especially. She never slowed down searching for answers, pushing for resources, and standing up for her daughter. I learned much from her, about advocating, not accepting the "we don't know" answers.



From the Rowe Family Blog
Jordan didn't wake up this morning. She passed peacefully in her sleep sometime between midnight & 04:30am. She was right there with us, yet made no plea for help, no gasps for breath, no cries of pain. She just slipped away. Quite unexpectedly. She was almost back to "normal" from her illness of the last few weeks, and was going to go to school today for the first time in over a week. Unfortunately for us, though, it was her time to go. We are shocked and devastated. Devastated. We will let you know when arrangements have been made for her memorial service.

Leslie, Devon, Avery, & Birkeley


My heart aches for the loss of Dear Jordan. Jordan was Lily's IS Sister, and she will always be in my heart.

Saturday, March 21, 2009

Meal time & Lily's Big Girl Bed!

So we got this nifty little Flip Video Camera after reading a post in Miss Mira's Blog. Since then we've been taking all these little video clips and it's just a GREAT little camera. I adore it.

Recently we took a video during dinner where Lily was particularly happy. I didn't write about it much here, but while she was on the keto diet, mealtime was...challenging. Lily really didn't like the food, and she was so frustrated that she couldn't feed herself. (Since it is imperative that all the food make it into her mouth, and Lily isn't really the...tidiest...eater, we couldn't let her self-feed.) Anyways, we took a video back in November to show our neurologist how difficult the meals were for Lily (which we ended up not showing him as we took her off the diet in December). So today I put the two videos together in a little compare/contrast to share with everyone here.

video

About nine months, maybe a year ago, we bought Hank his Big Boy bed. Lily was still in her crib. She got to be too big to lift out, so we took the rail of her crib and used a saftey rail. Unfortunately, she just didn't understand and would pull up on it and topple over. This arrangement only lasted a week or so until I just took the crib down completely & Lily has been sleeping on her crib mattress ever since.

A few weeks ago Lily learned how to climb up on things, including the couch and Hank's bed! Ever since she kind of figured that out, she's been insistent on sleeping in Hank's bed. We'd go in to get her up in the mornings, and find her asleep in Hank's bed.



She just had something about either being in a real bed or being with her brother. We indulged her while worring a little about her safety, but she's done really well. So this weekend we went to IKEA and bought Lily her OWN Big Girl Bed. We got coordinating blankets and curtains and everything. Todd & I spent all day today putting the room together, and Lily is asleep in her Big Girl Bed right now!

Walking into the room:


Here's the twins' beds pushed together.


Putting Lily down:


Tucking in:



Brother Snuggles:





G'nite babies!


Tuesday, March 17, 2009

Lots to update on!

Well, where to start...so much going on...

We had a fantastic trip to Detroit, MI & Loveland, OH. We spent great time with family and cousins, and learned a wealth of information from Dr. Chugani.

Lily loved having all that space to roam around in the airport:




In Detroit, everyone in the EEG lab was fantastic. They bundled Lily up super tight, making it look like a little EEG Spa:


Lily did fairly well in the hospital over night:


The overnight stay was tougher than I'd planned for. Lily was confined to the bed 100% of the time so she could stay on camera. Also, they require the parents to stay awake the whole night so that we can "push the button" when/if the child has a seizure. Lily doesn't have siezures in her sleep, so I wasn't prepared for this. WHat made it especially tough is that the rooms don't have a "parent light" over the seats, so I couldn't have any light on to read. Also, they block a lot of the channels on the TV so no Law & Order or Sex & the City re-runs to keep me entertained. No laptops allowed. I had loaded some tv shows on my iPod to entertain me, but I had no battery due to a little mishap the night before. :( So that was tough.

All in all though, the overnight went fairly well. We went direct from EEG to the PET lab. EVERYONE working in the PET lab was just amazing. They were warm, accomodating, gentle, and supportive. THey were so great with Hank, always making sure he had toys & entertainemnt. THey had a 2nd little waiting room that they let us just take over while we were there.

Waiting for the PET:


G'nite, little bean:


Hank works on the scan:


We ended up having both kinds of PET scans, the FDG & FMZ (the FMZ is the "study" PET that Dr. Chugani is running) so we had to go back on Wednesday for the 2nd scan.

On Thursday we met with Dr. Chugani to go over all the results. He spent nearly two hours with us answering tons of questions and discussing Lily. What we leared is that Lily is not a surgical candidate, and will not be in the future either. We can cross that option off the list.

Lily has bi-lateral hypometabolism in the temporal & parietal lobes of her brain. These areas of the brain control the higher-functions of learning and function: visual processing, memory, and language among other things. Dr. Chugani showed us pictures of the scan and the hypometabolism (areas where the brain doesn't process glucose as well) is nearly identical on both sides.

The most interesting thing about his observations of Lily was how he picked up on and really spent a lot of time talking about her autistic features. He talked about a small sub-population of kids with infantile spasms who are also autistic. This sub-population, kids he's observed for 15+ years, all have similar features, similar PET scans, and similar behaviors. This leads him to believe that htey all have some sort of undetermined genetic condition that leads to this. Dr. Chugani is also running this very large-scale gene bank that we all decided to participate in. We all (including Hank!) gave a vial of blood that will periodically be run against new findings in genetics. Dr. Chugani has access to the super-duper genetic tools that the NIH has, so he's making great strides in this area.

Dr. Chugani does not think that the cause of Lily's seizures is a mitochondrial/metabolic issue, however we take that with the same grain of salt that we take Dr. Saneto's believe that her seizures ARE mito related. Everyone has their biases and interests...we'll pursue them all until/if we ever find something. (A definitive answer/diagnosis likely won't change the course of Lily's life, but could have implications for Hank's reproductive future, and if we decide to have any more kids in teh future.)

One of the best things Dr. Chugani was able to clarify for us was with regards to the distinction between development & seizures. We'd always operated under the belief/assumption that the learning was directly linked to seizure activity. Must stop one to achieve the other, wehn in fact they are separate. This really tied into his observation of Lily's autism. He encouraged us to aggressively pursue theraipes designed for autistic kids. As I mentioned in a previous post, some of our other IS friends have had great success with ABA therapy. Dr. Chugani encouraged us to "embrace" her autism diagnosis, let go of feeling like posers, and use that diagnosis to get whatever therapies & treatments we could for Lily.

(Despite getting the autism diagnosis in August, I have been reluctant to embrace it and jump into the autism community as I didn't feel like Lily was "autistic enough". I don't believe her seizures/autism were/are caused by vaccinations, and I'm not necessarily going to pursue biomedical treatment for her. Finding acceptance as a parent of a child with special needs is tough enough; I didn't want to be "shunned" from the autism community. Dr. Chugani encouraged me to let go of all these feelings and jsut do what was best for Lily. Come to find out, he was totally right, and I'm learning SO MUCH about therapies and thigns to do with Lily!)

So, along those lines Lily starts her assessments for the ABA program next Monday. I'm thrilled to have hooked up with A.P.P.L.E. Consulting to provide Lily's ABA. One of our therapists is a good friend of my sister-in-law, Tiffany, and was in her wedding last summer. I was fortunate to spend time talking with Hayley about Lily and learning about how ABA will really help Lily's development. I'm THRILLED to be starting it next week.

Also next week, Lily has an AAC evaluation at Seattle Children's. This is another thing that neurodevelopmental suggested we do last August (and it took this long to get it scheduled, YIKES!). AAC = Alternative & Augmentative Communication. It's a two hour long eval and at the end, recommendations will be made about programs to use to teach Lily communication. We're going to have a large team of Lily Supporters at the AAC; her SLP from Cascade will be there, as well as her teacher, paraeducator, and PT from school will be there. Of course, Todd, Hank & I will be there, and Amanda our Nanny is coming too! WOW! Lots of people behind Lily, supporting her, and wanting her to get as far as she can!

Day to day, Lily is doing just great. We're so very happy we stopped the ketogenic diet in December. Lily is so much happier! We feel that it has also really increased her fine motor skills, as well as communication. We're using a few PECS with her at meal time (she can use the PECS to ask for more cheerios & a drink). She did the most amazing thing the other day! She was hungry, and whining a bit. So she came over to me at the sink, took my hand, and pulled me over to her high chair, indicating that she was hungry and wanted to eat! Of course I whooped it up and rewarded her with a snack!! GO LILY!!!!!!

Lily is done with the Ganaxolone study, and we've started her on a new medication called Banzel. Banzel was developed as an adjunct therapy for kids with Lennox-Gastaut, a different but related seizure disorder. We've seen good results with it, however we aren't seizure free. We're in teh midst of trying to decide if we're going to add a 2nd medication to her cocktail, or where to go from here.

All in all, we're in a good place right now.