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.

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

I emailed our former neurologist (was a resident for us, then he moved, ) to let him know about the ACTH price increase.

He rapidly put together a Wiki on the Miami Children's website. It can be viewed here: link (when I try & load it I get something about a security certificate, but I can just click to load the page anyhow).

Dr. Miller would love to populate the page with short stories of families who may be affected by this outrageous price increase. He has wonderful suggestions for action to take along with what you might say to various outlets. If you feel so inclined, drop him a line about your IS story (a couple paragraphs would be good) and include a photo if you like.

Dr. Miller is very dear to us, and I'm so, so very touched that he put together this page so quickly to help spread the word & hopefully make a difference!

Cost of ACTH Going Up

I know I have a lot of updating to do (hello, no updates in two months, BAD Blogging Mama!), but this needed to be added immediately.

I *LITERALLY* feel sick.

The manufacturers of ACTH (adrenocorticotropic hormone), Questcor just announced that they are raising the price of ACTH from ~$1,000 per vial to OVER $10,000 PER VIAL. (A typical course of ACTH can range from 3-6 vials of ACTH).

This is an absolute OUTRAGE, and I am BEYOND sick about it. ACTH is a first line med for Infantile Spasms, and many, MANY insurance companies already fight paying the $1k/bottle. Fewer and fewer kids will have access to this medication with this 1000%+ increase in cost.

Please, if you have a moment and feel so inclined, please give Questcor a shout (1-800-411-3065) & let them know that a 1000% increase on a medication that so many CHILDREN need is an outrage. That their bottom line & profit should NOT come at the expense of children's lives.