A Thanksgiving Anniversary

Turns out yesterday (11/25) was the 4 year anniversary of Lily's diagnosis of Infantile Spasms. It is shocking to me that we've survived four years of this devastating disease. Shocking to me that we are no closer to seizure control than we were four years ago, yet Lily walks, smiles, laughs, sits at the table, uses pictures to communicate, and above all else -- is HAPPY.

The events leading up to the Fateful EEG on 11/25 are as vivid in my memory as the birth of my kids. Perhaps moreso. The nurse practitioner at the twins' pediatrician was the first to suggest a diagnosis of IS. She told me, after witnessing a cluster of spasms, that she wanted us to go to Children's for an EEG to just "rule out" IS. She told me IS, the papers she had about it, had language ("severe to profound mental retardation") that would be upsetting but that she jsut wanted to rule it out.

Of course, when I read the description -- I knew.

I called my mom & Todd and had them meet me at our house. My mom arrived first, and I broke down. Couldn't stand. Couldn't speak. Couldn't breathe. Sobs. HOW? How could my baby be facing such a disease? How could my perfect, beautiful, innocent baby girl, who hit all her milestones and was just...PERFECT...have epilepsy? A catastrophic epilepsy? How could a name so benign, Infantile Spasms be so horrific?

We were referred for an EEG which involved our ped faxing a request to Children's, then we got put into the queue. It can take up to two weeks just to get scheduled! That didn't sit so well with me. Fortunately I have some friends who were able to get us in sooner, and we had our fateful EEG the Friday following Thanksgiving, 11/25. I think we had about 10 days of waiting before the EEG.

Of course, in those 10 days I spent lots of time with Dr. Google. I talked with who would become our neurologist at the time about what we were looking for and what would happen should we see hypsarrhythmia on the EEG. Wanna know how to pronounce it? HIPS-uh-rith-MIA. I didn't know at the time either.

But still. I knew. I knew Lily had IS. She had all the classic symptoms. Regression (she stopped making eye contact, smiling, bearing weight on her legs), clusters of "jack-knife" seizures, occurring around sleep.



I knew.

On the morning of the EEG, a whole slough of us went to Children's. Me, Todd, the twins. My parents. I think my brother was there too. Yes, yes, I'm sure he was. EEG 1st thing. I took Lily back and we met a super insensitive EEG tech. She's not there any more. She tried to talk to me about whether or not I had gone to Best Buy Black Friday oepning. Uh, NO. My FOUR MONTH OLD BABY maybe has seizures! You think I give a fuck about BLACK FRIDAY!?

Sigh.

She of course couldnt' tell us anything. We were given a pager, and we went to teh cafeteria. Where none of us ate. The pager buzzed.

We met wonderful Dr. Miller outside the EEG lab, but since we weren't actually in clinic there wasn't really anywhere private to go. He took us to a small waiting area up the hall where he told us that Lily's EEG did in fact show hypsarrhythmia, and she'd been diagnosed with Infantile Spasms. They'd preapred a room for us on so we could draw labs & start ACTH as soon as possible. He was warm, compassionate. Quiet. How do you deliver a diagnosis such as thsi to a family? He was wonderful. I wore a red sweater.

As we walked to our room, I went into my PTSD "state". I have a little PTSD as a result of my 1st pregnancy, with twins, before Hank & Lily. I had a late term miscarriage at 18 weeks. I was devastated and had to make decisions that no mother should ever have to make during her pregnancy, and as a result when i'm faced with overwhelming situations, I often detatch & shut down a bit.

I did shut down the day Lily was diagnosed.

I walked to our hospital room, but without feeling or presence. I was just blank.

Fortunately, my mama bear kicked in before too long and I was able to gain some strenght to get all my questions asked. They wanted us to stay in the hosptial for 3-4 days to learn how to adminster the ACTH (IM injections to the thigh), but since we'd gone through IVF and were very comfortable with needles & injections, they let us do the 1st one and then discharged us.



Can you see the sadness in our eyes? I can. I still catch glimpses of it in the mirror today. I see it in the eyes of my other IS mothers.

Todd gave the 1st shot. I couldn't do it. We also trained my dad to give some shots because there were some days Todd couldn't be there to do it. No daddy and no grandfather should have to inject such vile steroids into their baby girl. None.

Anyhow, the hospital took pity on us, or we were very lucky, and we had a double room to ourselves. Hank got to spend the night which was significant to me. I did not want the twins separated. I knew, even at four months, that these babies needed each other. Separating them was not an option for me. They didn't spend a night apart until they were nearly two.

During our 24 hour stay in the hospital, we met our attending neurologist who I knew would be awesome when he showed up because he had a Red Sox lanyard for his ID. While we ultimately changed neurologists when Lily proved to be a difficult case, he was one of the most gentle, compassionate, and involved neurologists we've had to date.

They told us to get hooked up with Little Red Schoolhouse, a birth to three center. Who knew there were such things? Little Red became an angel to us during our journey.


We had to go to the pediatrician 3x/week to get Lily's blood pressure checked. I had to text her stool 1x/week for blood. Lily was on ACTH, Zonegran, Prevacid, and Bactrim. She ate, at four months, an eight ounce bottle every two hours. she became so cushingoind that it pinched her little button nose. She was soo uncomfortable and unhappy.

She had about a week of seizure freedom. but the seizures returned. On Christmas Day, no less. And just that morning she had reached out & grasped a ball. Such a mixed day. I was devastated that the seizures came back. And I will never, EVER forget my Granno sitting with me on the couch, while I cried, with her arm around me telling me that I had to stay strong. That I couldn't let this set back break me. That Lily, and Hank, needed me to stay strong. This, from the strongest woman I've ever known. How I wish I had her strength to draw on today.

Of course, little did I know that this first round of ACTH would be the easier of the two. We did a 2nd round in the spring that was worse. WAY worse. She regressed to a newborn state. She couldn't hold her head up, could barely suckle a bottle. She didn't have the motor planning to nurse at the breast; she became solely bottle fed.

Fortunately, shortly after her 1st birthday, she began to develop again. By 20 months, she was walking.

Today, Lily walks, sits at the table to eat, feeds herself finger foods (still working on using a spoon!), drinks from a sippy cup, drinks from an open cup wiht assistance. She pulls us by the hand to indicate when she's hungry, points to what food she wants, uses pictures to communicate other desires. We're working on implementing a full PECS system.

She is in her 2nd year of devleopmental preschool, with a robust IEP and 1:1 aide. She sleeps in a big girl bed and can get in and out of it with ease.

She has autism.


Lily takes her medication on her own. We hold a tab in our hands, she picks it up with a perfect pincer grasp and puts it in her mouth and swallows it. She loves her pacifier. She can climb up into her Tripp Trapp high chair, and though she still needs teh seatbelt to keep her in place, she won't need it for long.

She can walk up stairs with assistance, but can't yet go down the steps. Unless she's sitting on her bottom. Then she loves to bump from one step to the next. She doesn't have the understanding to intentionally do it yet, she still requires full supervision.

She goes to Hippotherapy at Little Bit Riding Center once each week. She is a rock star on the horse.



She has ABA therapy three times each week, and goes to school four days each week. She rides the bus to school with her brother two of thosee days, and home three days. We begin the transition to Kindergarden in January.

She is strong. She is a fighter. She has tenacity like I've never seen. Perhaps it is just stubborness, like her mother. I suppose my worst trait may be her best.

Best of all, she is happy.
(photo by Michelle Enebo)

The first day of school!

First things first: Lily's MRI on Friday was NORMAL. This means she is not having the same side effect of vigabatrin that she had last time she was on it. HOORAY! Vigabatrin has been a great medication for helping control seizures (though we're not seizure free), and I would have been VERY disappointed to have to take her off of it. I think it's been great for her development as well.

Today was the first day of preschool for Hank & Lily. As I've mentioned before, Lily's school is piloting an inclusion program so Hank gets to attend with Lily 2 days each week. On those two days, they take the bus together just like big kids!

Of course, Hank had to Jam before leaving:


Picture at home:


Walking Lily up the driveway:


Walking to the bus stop


The bus is here!


Hank is on the bus!


All buckled in!


Away they go! *sniffle*


Of course, I had to follow the bus to school and make sure everyone arrived safely. With a non-verbal child, it's just imperative to make sure all the transitions go smoothly.

Hank arrived OK!


Here comes Lily! She needs lots of help coming down the steps.


In her chariot, waiting to go play!


Lily was SOUND asleep on the bus ride home!

So much going on...

We visited our neurologist today. We're going to increase Lily's vigabatrin dose a little bit, and then we are having an MRI on Friday to make sure that the side effects she experienced last time on vigabatrin are not present this time.

We probably won't do an EEG unless we stop seeing spasms. Sigh. That seems so unattainable to me, and it's hard not knowing if Lily still has hypsarrhythmia or not. But, there's no reason to go through the pain and inconvenience (and believe you me, they are inconvenient) without some change in her seizures.

I mentioned that Lily has these "eye seizures" where her eyes dart down & to the left during a cluster of spasms. His explanation is that it is probably an ictal or post-ictal response, not a different kind of seizure. He said that after spasms, the brain is still in such chaos that the firing happens along the same pathways and it's just a "symptom" if you will of her brain calming down. So depressing.

We also got referrals to the dental clinic and the ophthamology clinic.

Other than those things it was massively uneventful. I suppose that's good, but it's also hard to be in this "Well, just keep plugging along" mode. It feels like giving up on finding out and fixing the cause of the seizures, and just "accepting" that this is Lily's lot. That she's stuck with it forever. Suck.

Oh, I did ask about having a muscle biopsy (to rule out a mitochondrial disorder) done during the MRI, and Dr. S thinks that we don't need to do that. He thinks we won't find anything and wants to wait until they have this fancy-schmancy gene array stick thingamadinger that is significantly less invasive but will yield better, and faster, results. Ok, whatever.

The other stress going on is just about money. You may have noticed a few posts regarding fundraising for Lily's therapy. Well, we've tapped out all our resources for Lily's therapies & medications, and the well is dry. She has benefitted so much from ABA therapy. Despite having (arguably) the best insurance in the country, our ABA therapy is only covered about 60%. Hippotherapy is not covered at all, and vigabatrin has to be ordered from Canada (though this is about to change).

All told, we figure we spend about $1,500 a month on therapy and medication for Lily. So we are frantically pursuing any and all kinds of grants, state & federal aid (which there is basically none) and trying to be creative in ways to save money and make money. It's stressful and hard.

In good news though, tonight we went to the Open House at Lily's preschool and she was SO HAPPY to be back! She went ALL over the room, squealing and waving and just generally being happy. It was really wonderful to see her remember her classroom and teacher, and be so excited to be back there. Next Tuesday she starts back and she'll be taking the bus like a big girl on Tuesdays & Thursdays with her brother Hank. They'll be part of the inclusion program together. Wed/Fri I will drive her, but I'm excited to see how the bus goes. I'm also excited to have three hours all to myself on Tue/Thurs!!! What a novelty!

Woefully behind

I am woefully behind updating Lily Bean's blog. In June, Lily completed her first year of Developmental Preschool! She had a fantastic year and we were so blessed to have the teachers and staff that we did. Toward the end of the year, I started talking with the program administrator about developing some parent groups. I began an email group right at the end of the year, and I hope to expand on that, hopefully into a PTA of sorts specifically for the developmental preschool (not just the school at-large).

School starts up in about three weeks, so I'm really looking forward to this. Also exciting is that they are piloting an inclusion program this year! Hank is going to get to go to school with Lily two days per week! I'm am absolutely over the moon about this! I've wanted an inclusion program for them since I knew Lily would be in special ed, but it would've meant moving ot a different school district. We got really lucky with our program admin because he really believes whole-heartedly in inclusion. He says, "Children who learn together, learn to live together." I couldn't agree more. I can't wait to work with him more on some projects toward this goal.

We are having a revision IEP meeting in a couple weeks. We knew that Lily would meet some of her IEP goals over the summer doing ABA therapy, and we were right!!! ABA has been absolutely INCREDIBLE for Lily. She consistently requests items from a field of two using PECS, and we're beginning to expand to a field of three. Soon, we hope to generalize that so she can request items wherever she is. Also, she has learned how to point!! When we began this program back it May, Lily did not have any of the fine motor skills to even form a pointed finger. But look at her now!!!!


We had four year old portraits done of the twins by my dear friend Susan of Whimsical Photo Design. Susan is a friend from Husky Band days, and we'd lost touch over the years. We recently reconnected on Facebook, and when I learned she was a photographer, I was thrilled to have her come up & take these pictures of the kids. They are absolutely stunning, and I am just over the moon to have had her come take them.







Finally, and perhaps most exciting is that Lily has been enjoying hippotherapy since the beginning of June. We travel out to Little Bit Riding Center every week where Lily rides a horse (!!!) for an hour at a time. It is absolutely amazing to see her do this! Lily has incredibly low muscle tone, and we jokingly call her "noodle girl" or "rubber band girl" because she can be so floppy. So to see her sit up so tall, and so strong on the back of a horse is enough to bring this mommy to tears. The video below is from Lily's ASSESSMENT before we ever began therapy. This was her first time EVER on a horse:


Since starting hippotherapy, Lily now climbs up into her highchair unassisted. Climbs onto the couch unassisted. Crawls up the stairs nearly unassisted. Gets down from her carseat unassisted. Gets out of her stroller nearly unassisted. She can (and does!) climb into the bath tub when it's empty, and we're working on shaping that into functional climbing into the tub. Her gross motor development since starting hippotherapy is absolutely astounding. Not only can she do all these things, she does them with complete confidence. And conviction. Oh, did I mention she climbs up on a kitchen chair, and then onto the ktichen table?? Oh yeah, she does that regularly if the chairs aren't pushed in!!!

It has really, really changed our life, and Lily's life for the better. The biggest downside? It's expensive. In fact, ALL of Lily's therapies are expensive. We're fortuante that we have incredible isnurance that covers a portion of Lily's ABA therapy, but all told, at the end of the month we're generally out $1,200 or more for all of her various therapies and medications. (Vigabatrin is not yet FDA approved so we still have to order it from Canada & pay out of pocket for it. A drag, but worth it to see how beneficial it has been.)

Why can't I slow down?

Firstly, FANTASTIC news for Sophie!!! She's made it through surgery with great success! All the best case scenarios played out, and hopefully they'll never see another seizure again!! HOORAY!

As for me, well, I'm enjoying a fantastic weekend away from Todd & the kids at my family's cabin on Vashon. It's amazing over here: mid-70's, incredible view, and quiet. I arrived last night and spent the night by myself. This afternoon two of my best girlfriends are joining me for some girl-time.

But...(there's always a "but")...I'm finding it hard to just let go & relax. Maybe because I'm so constantly wound up it would take a full week of this to unwind? I don't know. But I just feel antsy. Like I should be doing something. Preparing meals, cleaning, researching, whatever. Anything that isn't totally FOR ME. It's weird. I wasn't expecting to feel like this.

(Maybe I just need some more wine! LOL!)

In Lily news, we started her on Vigabatrin again about a month ago. She was on VGB back in early 2006 when she was just a baby. She was on a very high dose of it, and it ultimately was responsible for her status seizure that landed her in the hospital for three days. During this hospital stay, her MRI revealed subtle brain changes that possibly indicated a terrible mitochondrial disorder called Leigh's Disease. Fortunately, thanks again to the IS Yahoo Group, I learned of another kiddo, Vic, who had a similar finding but it wasn't due to Leigh's; it was a rare side effect of the Vigabatrin. Some fast & furious research, phone calls, and discussion yielded a few other kids with similar findings, and the only way to know if it was due to VGB was to wean off of it, and repeat an MRI in six months.

I think you know where this goes, right? Lily didn't have Leigh's (THANKGOD!), but instead was just a rare side effect. She was one of a few kids who was written about in a paper published by Dr. Pearl at Children's National Medical Center in DC, about this particular side effect. Well, we always wondered if VGB would be good for Lily because it did really help control her seizures in 2006, but we wrote it off considering the bad side effects.

After we saw Dr. Chugani in February, we started considering it again as the paper suggested that young age & high dose were risk factors (both of which Lily had when she had the status). I sent an email to Dr. Pearl asking his opinion, just hoping he would write back...and he did! The next day! Amazing. AND he was familiar with Lily, and seemed genuinely pleased to hear from us. He was definitely in favor of trying it again, suggested not going over a certain dose, and that he'd tried it again on several kids with no recurrence of the s/x.

So, we started it again abotu a month ago...and it's been amazing. Lily's seizures have gone way down and we're just seeing an explosion of development. Her attention is significantly better. She'll follow your point to a toy when you have her attention; she responds to her name. She is learning to discriminate between two toys during ABA. It's amazing.

We're still on a fairly low dose with plenty of room to move up. I'm reluctant to though because we have such a good balance of s/x to seizures. I worry that if we moved up on dose, we'd see greater side effects (floppiness, sleepiness) with relatively little benefit. I could be convinced otherwise, and will bring it up at our next neuro appointment.

We had a successful IEP meeting to write the goals for next year. We're lucky to have such a great team working with Lily. I personally think she's going to meet a bunch of the goals over the summer through ABA therapy, but we'll see. We can revise in the fall if needed.

Lily's school is also beginning an inclusion program next year!! I couldn't be more thrilled about this! I've wanted an inclusion program for the early childhoold preschool since we knew Lily would be going there. Two neighboring districts have similar programs, and we seriously considered moving so that the twins could go to school together for even a short while. Well, next year Hank will get to go to school with Lily two days a week! We love his regular preschool so he'll continue to go there three days a week as well. This is likely the only opportunity Hank & Lily will have to go to school together so we're just overjoyed.

I'm also working with the program manager at her school to begin some parent involvement, maybe through an ECE PTA or other some kind of group. I miss that from the Birth to Three days, and I know it can be successful. I'm excited about it.

So much going on!

Wow, what a few weeks it has been. Lots to share!

Todd and drove to Jordan's memorial service on March 28. I'd never met Leslie or Devon in person, so it maybe seemed a little odd to spend a day travelling to support their family. But that's the weird thing with this community of IS parents...you don't need to have met someone in person to feel moved by them; love their little ones. And my heart just knew I had to be there. Perhaps it comes from my own history of losing children (2nd trimester miscarriage), perhaps it just comes from having special needs kiddo. Maybe it's both. But I am so glad to have gone down to Vancouver to love & support the Rowe family.

Devon read an incredibly moving eulogy during the service, and the text can be read here. The thing about his words is that I relate to all of them. Like many folks with special needs kids, I'm asked all the time "how do I do it"? Sometimes, I don't know! Sometimes, at the end of the day, I look at all the things I juggle, meds, school, therapies, my business, my activities, my family, my friends, and I think, "Who is this person I have become?" I was never this organized (and usually I still dont' feel organized!). The bottom line is that I'm jsut doing the best I can. Doing what I can to love Lily and make sure her needs are met. Thanks, Devon, for writing it much more eloquently than I could ever possibly do.

In other news, the day after Jordan's memorial Todd, Hank, Lily and I, along with my brother & his wife Tiffany, my mom and our good family friend Vicki all participated in the CanDo5k. It was a 5k Fun Run/Walk with a kids dash after. The organization that put it on, Northshore Special Families, is a group supporting parents, kids & families with special needs. They're a really neat organization that I'm hoping to become more involved with.

Anyhoo, we just did the 1k walk. We didn't know if Hank would make it the full 5k, plus they were calling for SNOW on the day of the walk! Sheesh! Well, we had a great time at the walk, and Lily even got out and walked the final 20 yards to the finish line! We all crossed the finish holding hands, our family of 4. A proud moment for this mama, to be sure.



Lily has also started her ABA therapy! We've only had three sessions so far, but it is INCREDIBLE what she can do after such a short time. She already understands "Lily, sit down in your chair!" and will even come from a few feet away to sit in her chair! She can identify and pick up a ball when it is placed in front of her with another object! And she's beginning to match 2D pictures with their 3D objects. I can't wait until we get the therapy going 3x/week. I jsut know she's going to pick this stuff up rapidly.

Finally, we went over to my family's cabin for Easter weekend with my parents, brother & Tiff. It was just looovely. Fantastically relaxing, good food, golf, and a 2-hour-long-nap-with-Lily! Divine. On Saturday, Todd and the twins were playing on the trampoline and Lily was just laughing hysterically. Naturally I videotaped it and want to share it here. Lily basically didn't laugh for the first 2-2.5 years of her life. One of the first things that she lost when her seizures started was her smile and giggle. And she has just an infectuous giggle. So every time she laughs now, its just the most magical sound.

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.

Winter time!

Well, I'm a bad blogging mom. But it's time for a Lily Update as there are some big things going on!

First off, HI JEAN!

Ok, now that's out of the way...

Lily came off the Ketogenic Diet over Christmas. It wasn't planned, and I think our neurologist is not super thrilled, but it was the right thing for us to do. Lily had a little stomach flu and couldn't keep anything Keto Friendly in her body. So we initiated the B.R.A.T. diet: Bananas, Rice, Applesauce, Toast. We stuck with bananas and dry toast, which aren't exactly Keto foods. And she was SO SO SO happy. Seriously, we haven't seen her that happy since before starting the diet. We did 24 hours of BRAT, then tried some Keto Foods. And they just went right through her, so back to BRAT we went. And she was so happy, not exhibiting ANY side effects of "normal" food, that we slowly introduced other normal stuff: turkey, beef, milk, cheese, yogurt, etc. We didn't "carb load" her, we tried to stick to higher protein stuff for a few days.

All in all, it has made a WORLD of difference for her disposition. She is having fewer seizures than before her illness. We don't know if they will eventually creep back up, but it just became clear that the diet wasn't helping her enough to make the trouble and hassle worth it. And putting LIly back on a regular diet opens up all kinds of teaching/therapy possibilites because food is a major motivator for Lily. We can use it as a reward for performing certain tasks and activites.

We couldn't be happier with our decision, despite it being an unconventional move and not what we had originally talked about with our neurologist.

Lily is also going to be weaned off of Ganaxolone, the study drug she takes. Marinus, the drug company sponsoring the study, has found that Ganaxolone doesn't provide the kinds of seizure control results they wanted so they're pulling the study & will not be pursuing FDA approval (at least for use in Infantile Spasms...it could be approved for other siezure types). So, we start the wean next Monday and she'll be off by early February.

This leaves us in a bit of a pickle as we're waiting on some genetic testing results before we start the next medication that we want to try (Valproic Acid). We'll set up the plan next week, but we may add a different med to bridge the time before our genetic results are back.

Lily was officially diagnosed with autism this summer. Normally parents don't cheer this diagnosis, but we did! This opens up a benefit in our insurance that will cover the majority of ABA therapy for Lily. I'm working on getting that set up for her now. I'm so excited about this! I just know it's going to do wonders for Lily and that she'll really start to learn. Our friends Cody and Sophie have both exploded in development with the use of ABA.

Lily is 1/3 the way through her first year of school. We really like her teacher and her 1:1 aide, and are happy with how things are going. We're going to revise some of her IEP goals soon now that we can use food as a motivator/teaching tool. There's just so much more we can do with Lily without the burden of food restrictions!

Finally we are working on arranging a trip out to consult with Dr. Harry Chugani at Children's Hospital of Michigan. Dr. Chugani is considered "the" doctor to see among IS parents. He has pioneered the use of PET scans to treat Infantile Spasms and determine if kiddos are surgical candidates or not. It's a path we've considered for a long time, since Lily was 6 months old at least. We haven't been able to pursue it this past year since Lily's been on the diet, but now that she's off we are planning a trip. It won't be easy -- it involves a 24 hour EEG, a PET scan (with sedation) and theoretically, a second kind of PET scan that Dr. Chugani is studying. Then on the fourth day we actually get to meet with Dr. Chugani and discuss all the results.

We'd probably take the whole family to go. It's very important for Hank & Lily to be together as they really depend on each other. It's important for Hank to be a part of Lily's world as it is, and will be, his world for his whole life. He's such a natural caretaker of her -- he is always checking on her, loves to snuggle her, and nwo that she's off-diet, FEED HER! LOL! Anyhow, since we'd be taking all four of us, we'll probably drive down to Maumee, OH to visit Todd's grandma. Hopefully Todd's mom will come up to visit, along with his sister & her kids. The four cousins haven't been together since before Lily was diagnosed -- October, 2005! I can't wait for these kids to be together and play!!

Here are the twins on Christmas Eve:

Summertime!

Hello friends!

Just wanted to offer a brief update on Lily...

She's doing great these days! We are still on the Ketogenic Diet at a 3:1 ratio, which Lily tolerates fairly well. We go through periods of difficulty, but overall she does well with it. Her favorite meals are eggs & fruit (because I can hide 100% of the cream & butter in the eggs), Ketocal formula, and a smoothie recipe with jello, cream, fruit, egg beatersa, and oil. Sounds appetizing, no? LOL!

Since the diet has been such a big help in her seizures, we've been able to wean Lily off her Topamax. We're still in the process, but we started at 75mg 2x/day, and we're now down to 25mg 1x/day. We're so close to be off of "DOPE-amax", and have really seen a change in Lily's alertness and awareness of her surroundings. Can't wait to be done with this!

She's still part of the Ganaxolone study, and we still think the med helps her. It's hard to believe it's been a year since we were in Los Angeles starting this new therapy for infantile spasms. The study keeps getting extended so as far as we can tell, Lily will be on this as long as we think it is helping.

Lily turned THREE this week! It's just amazing. She enjoyed her birthday dinner of smoothie, and loved watching the candles on the cake even though she couldn't indulge. She loved opening her gifts, though was much more excited about the wrapping paper than the actual gift.

We completed her IEP for the school district in June. We were THRILLED that the school district OFFERED an 1:1 aide for Lily, which we figured we'd have to fight uphill for. We have a little bit of work to do on the verbiage of her goals, but overall we're excited for her to start school in the fall.

We're also pursuing a diagnosis of autism for Lily. She doesn't present as a "classic" autistic child, however she has enough of the criteria (in my opinion) to qualify for a diagnosis. Having this diagnosis will open up lots of doors & therapies for her, including Applied Behavior Analysis which I believe Lily would REALLY benefit from. We see neurodevelopmental in August, so we'll see where we stand at that point.

Lily & Hank are going to a summer camp at the end of the month! There is a fantastic program through a local hospital that is designed specifically for special needs kids & their siblings. The twins will be in a small group, around five kids, and there are two teachers for each "pod", plus each child has a "buddy" which is most likely a high school student doing their extra credit for the summer. I hear that there is a waiting list to be a volunteer and that some of the students enjoy it so much they come back year after year, even after finishing out their credit!

The camp takes place at a HUGE park just north of us, and there are classrooms, fields, playgrounds, and a petting zoo!! So exciting, and I think the kids are just going to LOVE it.

Lily is also on the waiting list at Little Bit Riding Center where she would get hippotherapy. Hippotherapy is "a treatment that uses the multidimensional movement of the horse; from the Greek word "hippos" which means horse. Specially trained physical, occupational and speech therapists use this medical treatment for clients who have movement dysfunction. Historically, the therapeutic benefits of the horse were recognized as early as 460 BC. The use of the horse as therapy evolved throughout Europe, the United States and Canada." Her PT/OT & SLP have both suggested that Lily would benefit from this therapy. Unfortunately, there is a YEAR LONG waiting list at LIttle Bit, so it's a while before she'll get to start.

We're starting swimming lessons with Lily again tomorrow; it's just a parent-tot class, and not specific to special needs, but Lily loves teh water and I think she'll enjoy the playtime with all four of us.

Next weekend is Uncle John's wedding, and Lily is a flower girl! There are actually two flower girls, and Lily will be pulled in a wagon down the aisle. She looks like an angel in her flower girl dress, and I can't wait to share pictures.

OH! Our Epilepsy Walk was a HUGE success! We raised over $3300 for the Epilepsy Foundation Northwest. We are so grateful to everyone for supporting Lily and the disease she battles daily.

Chug-chug-chugging along

Well, Lily's MRI was cancelled at the last moment due to her having a cold a few days prior. The anesthesiologist was concerned as it can complicate sedation, and since he's not right in the room by her, he just felt the (small) increased risk wasn't worht it for what is, ultimately, an elective procedure.

So, we're rescheduled for 4/29.

We've increased Lily's ketogenic ratio to 2.5:1. So far, so good. One really great thing is that I've finally figured out a way to get Lily to drink the cream! I figured out the right combo of dilution (to make it the consistency of milk) & flavoring (a little sugar-free vanilla syrup + 5 drops of bickfords banana flavor). I also created a couple meals with some of her favorite foods. She's now having some Cheerios occasionally (there are actually a good amount of Cheerios in only 6 grams!), and I also found out about Miracle Noodles which are basically just soluable fiber (thus, no calories or carbs) shaped noodles. So I was able to make her a fairly tasty Mac 'n Cheese meal. It has a really good volume to it, so I think she actually *felt* full for once in a long time.

She's drinking water very consistently (hooray!) which is great as we learned recently that her last round of labs indicated some dehydration.

We started the paperwork to transition Lily in to the developmental preschool in our school district. She'll have the full round of evaluations in the next month, and then at the end of May we'll meet to discuss her eligibility. Finally, in mid-June we'll meet to draft Lily's first IEP. I'm already gathering all my information, and formulating what I want on her IEP right now. I'm talking with lots of friends who have knowledge of the process, and getting my arsenal of advocates in my bag.

Todd & I are heading out this weekend to Vegas for our 1st vacation since having kids. I figured out it has been nearly three years since we've been on a vacation of any sort. I'm very much looking forward to leaving the twins with my parents, and being able to just turn off my brain for three days. blissssss

Still not much to report!

We had our 1st diet follow-up appointment about 10 days ago. Her labs all look great, and we could probably move up in ratio if we wanted. We haven't pushed for that yet, but may next week.

While we haven't seen a big change in #'s of spasms, we have seen an increase in Lily's alertness, and engaging with us. She's also fairly consistently signing for "more"! This is a HUGE accomplishment for Lily, and really indicates she's learning cause & effect. Naturally, she associates it with food which we want to get away from, but for now we're just enjoying the accomplisment and not trying to change it too much.

Lily has an MRI tomorrow (Tuesday, 4/1). It's just a routine MRI, to make sure the changes Lily experienced while on Vigabatrin are still gone (the Keto diet can make these changes re-appear), and also just to check for any abnormalities now that her brain is a bit more developed. She hasn't had one in nearly two years, so it's kind of a big deal.

Other than that, we're still going to start the transition to the school district next week, and get the process going for Lily's first IEP! YIKES!

Not about Lily, per se...

(Quick Lily update -- Lily continues on the Keto Diet, at a 2:1 ratio. She's eating well, but doesn't want to drink anything. She continues to have seizures, but she does seem to be more alert, present & engaged which is very encouraging. We have quite a bit we can tweak with the diet to keep trying for seizure control, so we're still hopeful.)

I know this is a blog about Lily but we had a lovely afternoon today visiting my Granno to take pictures with all my cousins celebrating Granno's 80th birthday this year.

All of Granno's grandchildren recreated the photo we had taken for her at Christmas in 2000.

Here's the original from eight years ago:


And here we are today, with two great grandchildren:


And of course, the lady of honor (doesn't she look absolutely beautiful?):


My brother & I also got to spend a few minutes in Granno's new condo for the first time today. What a fantastic place! I could immediately feel how comfortable Granno was there, and it made me happy to know that she was in a place she felt happy. She has a lovely view of downtown, with a peek of water & mountains too.

It was a lovely day.

We're set to star the Keto Diet!

Well, we have our start date for the Keto Diet: February 12.

Lily will be admitted to Children's for four days. During those four days, she'll start out with a short fast, then will begin eating Keto Meals at 1/3 her calculated calories, then 2/3 her calories, and the last two days will be at "full strength". I expect her to be somewhat crabby as she's a girl who Likes To Eat.

(Originally, we were looking at a start date of 2/5 which is Super Tuesday...selfishly, I'm thrilled to wait a week so I can keep my date w/my good friend Amy to watch Super Tuesday coverage all day & then have dinner w/our husbands while we watch returns. Gotta have SOME adult time, right?)

We've begun preparing for the diet by introducing some keto meals to Lily. We've offered her diluted heavy cream to drink (she likes), made some keto "chocolate milk" (diluted cream w/sugar free chocolate flavoring & a couple drops of Stevia), scrambled eggs slathered in butter (not a huge hit), and Keto Egg Nog (she liked that). I'm also getting used to lookign at EVERY label of food and discerning what has hidden carbs in it (lots of stuff!). I'm putting together my list of items to purchase before starting the diet (I need new measuring spoons and lots of little plastic containers to store stuff). I've finished reading Keto Kid, and am about 1/2 way through The Ketogenic Diet by John Freeman (aka: the keto diet bible!). I'm putting together a whole "keto diet folder" with recipes, information, and lots of other stuff that I can keep in the kitchen and take to appointments with me.

While Lily is in the hospital, I think I'm going to see if there's a social worker or someone who could spend a little time with me & Hank to help explain to him about Lily's diet, and why she needs all this special care & attention. I noticed him mimicking her spasms the other day (doing a head drop & then fake cry). I don't think it was to get attention, I think it really was just trying it on. He didn't seem to really want us to notice that he was doing it. I didn't make a big deal about it, but we did talk a little about it. He's very aware of Lily & her condition, and I think it is important to not let those feelings of his get lost in the shuffle. Fortunatley, during our hospital stay we aren't confined to our room so we can all go play in the playroom or perhaps even take a dip in the therapy pool.

Now that we've decided to move forward with this, I kind of just wish we didn't have to wait these last two weeks. The waiting & anticipation is hard!

Long time no post!

I'm such a bad blogging mama! It's been ages since I've checked in. Rather than recapping the past six months, I'm just going to give a quick summary of where were at, and then start updating from here.

Ganaxolone - Study Med
Lily continues on Ganaxolone. She is currently at the highest dose the drug company will allow, and it is helping reduce the # of seizures, but has not made us seizure free.

EEG
Lily had a 24-hour EEG last month which indicated that she was A) still having spasms, and B) still having hypsarrhythmia. Bummer. But we already knew 50% of that, right? She's having a "hypsarrhythmia variant" which essentially means it's a more organized hyps, due to her growing up. Our neurologist said that while it was different than a year ago, it was not improved. Big bummer.

Therapy/Early Intervention/Pre School
In November/December, we made the decision to discontinue Lily's therapies through Wonderland, and instead enroll her in a private therapy center. We were sad to leave our therapists at Wonderland (although we maintain contact with them), but we're SO happy we made the switch. Lily's needs are so great that the model Wonderland had adopted just wasn't enough for her. Now she gets direct, intense physical therapy twice a week, and speech/OT once a week. We're very happy with this.

We are also enrolled in the once a week preschool class at Little Red. Last fall I tried desperately to find a good preschool program for the twins, but there just wasn't anything to accomodate Lily's needs. I finally called the people at Little Red just in tears, and they made arrangements for us in their program. We are ETERNALLY grateful, and are so very happy there. Hank goes to a twice a week class on Monday & Wednesday, and Lily goes on Wednesdays (in a different class).

We're also facing our transition to the school district as the twins' 3rd birthday looms ever closer. The Shoreline School district (where we live) has an adequate special ed program, however they don't enroll typical "peer models" (ie: Hank), so the twins would have to go to different schools. Not my ideal situation, not to mention very inconvenient! Also, Shoreline is experiencing a "budget crisis" and have significantly cut funding for Special Ed. I've talked with some people also, parents & others who have experience with the district, and the reviews are mixed. So we're exploring options on this front as well, including requesting an "intra-district transfer" (meaning she'd go to school in a different district), and/or moving to a different district.

I constantly joke that I need to make myself a t-shirt that says "Yes, I am THAT parent." LOL!

What's going on now
So, where do we go from here? Well, we're most likely starting Lily on the Ketogenic Diet (click link for Wiki about the diet). We met with the dietician yesterday to get a sense of the diet and how the program works at Children's. We enjoyed our discussion with her, and feel hopeful that the diet will be a good move for Lily.

We're weaning her off Prednisone (FINALLY), so she'll soon only be on the Ganaxolone & Topamax. Hopefully if the diet is successful, we can eventually wean off Topamax and/or Ganaxolone (though Topamax would be my 1st choice).

Aside from all the medical, seizure related stuff, Lily is a gem. She walks around (unsteadily; we call her our little Pinball!) and likes to pick stuff up off the floor. She loves toys that shake/rattle, make music and/or light up. She will occasionally sit still to look at a picture book. We're working very hard on trying to get her to put objects into a container. She's good at taking stuff out, but doesn't seem to understand putting them in.

She was great with the Christmas tree! She would try & touch it but responded when we would say "No, no Lily!" in our "warning" voice. Frankly, we had a harder time with Hank & the tree than we ever did with Lily!

She still isn't the best sleeper. She takes a while to fall asleep and then generally wakes up once in the night for an hour or so. She's also the 1st to rise every day, usually an hour or more before her brother.

One of my goals for the year is to be better about blogging about Lily. I know there are people who check here every day (you know who you are!), and who care so much about Lily. I hope to be better about this than I was last year. :)

More big news!

Lily Bean is WALKING!!!!!!!!!

She has taken up to five steps now, and gets more and more proficient at it every day! She pushes up to stand from sitting (to a squat then up to stand) and can stay balanced at standing for quite a long time now!

It's very, VERY exciting around here!

We're moved into our new house, and are trying very hard to get settled as quickly as possible (which actually is very slowly because it's just plain Hard with two two year olds!). It's wonderful living next door to my parents of course, and even better having so much extra space. Lily tolerated the move very well, but Mr. Hank had a hard time with it. Now that it's been a week things are back into a nice routine.

No news on the Ganaxolone front, or even on the neuro front. We had an appointment w/our neuro at the beginning of the month, but we decided (with his blessing) that it really was pointless for us to come in right now. We're in touch with him via email weekly, and really, until we get the Ganaxolone going, we're just in a holding pattern.

We have started giving Lily Acai juice daily, after reading about some folks who've had success with it on the Yahoo Infantile Spasms Group. We do believe it helps keep the number of spasms down. We aren't seizure free on it, but if we miss a day of juice, it seems the next day is worse w/seizures. Of course, this is all very unscientific but when you are a parent dealing with this every day, you get to be unscientific. :)

And, since starting the Acai and also since her walking is getting much better, we've seen a big return of her babbling. We're hearing lots of ba-ba-ba-ba and ma-ma-ma-ma and wa-wa-wa-wa. It's great! Language is obviously a good indicator of healthy neurologic development, so this is great for Lily.

We should be hearing about Ganaxolone in the next 10 days or so...hopefully we'll be starting it in a couple weeks! WOO!