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)

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.)

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.

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!

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!

Checking in

I've been horribly remiss in updating the blog, I'm sorry. It's been a busy month here!

Just a quick post before I run off to bed...Lily CRAWLED today, the furthest she's ever gone! She's pretty proficient in her "bear crawl", but we've been working with her a lot on regular, hands & knees crawling. Today she crawled all the way from Mimi (my mother in law) to me, kitty-corner from where she started, all on her hands & knees! It must've been 7 or 8 feet, which is BY FAR the furthest she's ever gone!

So proud of our Lily Bean!

We took a family trip to the Woodland Park Zoo for the first time a couple weeks ago, taking advantage of a wonderful Christmas gift from a dear friend. Lily enjoyed being outside in the fresh air, and especially enjoyed pulling up on the animal statues.


Tomorrow we have our surgical/anesthesia consult to discuss Lily's upcoming (yet to be scheduled) skin & muscle biopsy. More detail on that later. :)