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!

Hanging in there

Not much new to report. Lily continues on her diet at a 2:1 ratio. She's still very picky about what she will & won't drink, but she's getting better at sipping water all day long. I pretty much always have a sippy of water laying around, and she'll take a swig throughout the day.

We're still seeing seizures, but everyone seems to agree that her attention & "alertness" has increased since starting the diet. We have our 1st follow up appointment on Wednesday, and I'm anxious to hear what they have to say (along with what her labs look like).

We start the transition into the school district special education program in April. Lots of evaluations & developmental profiles to be completed, and I'm all sorts of nervous about it.

That's all from around here!

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.

Keto Diet, Day 4

Today was a better day. We got Lily's labs turned around, and she had much better color and energy. She took most food today & kept it down. She still flat out refuses any liquids, but I think that might be partly due to being on IV fluids for 24+ hours, and the fact that her IV is in her right, dominant, hand so she can't grasp a cup.

We're HOPING they'll let us come home tomorrow. I think if her labs are stable, she's still taking food & liquid (we're forcing the liquid at this point), they'll let us come home. I also think being in her home setting where it's familiar, routine, and comfortable will help Lily.

My grandma has been diagnosed with Angioimmunoblastic T-Cell Lymphoma, a rare & very difficult to treat form of Lymphoma. If you can spare good thoughts, my family would appreciate it.

Keto Diet, Day 3

*sigh*

Things aren't great. I'm ready to give up, really! I'm having major self-punishment for voluntarily putting my girl through this!

We're just finishing day 3, and Lily can't keep anything down. She flat out REFUSES any liquid, which is so so so uncharacteristic for her, and now she's on an IV.

She's in high ketosis, and is acidotic. Her CO2 is very low (10), so they have her on an IV with sodium bicarbonate to try & raise that.

AND, despite all this, I'm still seeing seizures, so it all feels for naught. Honestly, I'm ready to have a meeting w/our neuro & dietician and tell them that unless they can give me good reason to keep going, I'm ready to pull the plug! I'd rather deal wtih some seizures each day and have Lily be happy & herself, rather than no seizures & have her be in this awful, lethargic, horrible state.

All of this is a relatively common side effect of starting the diet. I mean, we're COMPLETELY changing her metabolism which is a shock to the system itself, AND she's on topamax which can make the blood chemistry out of whack as it is, and add to the acidosis. None of this means she can't tolerate the diet and we have to stop. But it is so hard to persevere & push her through this hard time with blind belief that she'll start to feel better and will (hopefully) get some seizure control.

What a crap-sandwich Valentines Day.

Keto Diet, Day 1

Well, we've had a looooooooooooooooooooooooooooooooooooooooooooong day here at Children's. First, Lily was to fast after dinner with the exception of "Keto approved drinks" (no-calorie fruit flavored water, or the like). No meds either, until after labs. We were to be here at 11:00 for labs, then a noon admit. After labs, Lily was allowed a cup of "Keto milk" (diluted heavy cream), but she wasn't too excited about it. Well, then our room wasn't ready at noon. Then it wasn't ready at 1. FINALLY at about 2:30pm we were taken to our room, a decent sized single on the medical floor. It's noisier up here than it generally is in the telemetry unit, but the nurses have all been great.

We were supposed to get her 1st meal (1/3rd her calories, at a 3:1 ratio) right after arriving in our room. But the dietician ended up not getting it to us until 4:45. Our girl was NOT a happy camper. But she eat her tiny meal and then fell asleep at about 6:00 for a couple hours.

She woke at about 8:00, ready for her 2nd keto meal (also tiny) and was up for a play time. I had *JUST* gotten her settled for the night when the nurse came in to tell us we were being bumped into a double room because they needed the single for an RSV kid who was being admitted from the ER. *SIGH* What can you say to that?? So now we're all tucked into our new room, Lily is asleep (again, hopefully for the night). She took a while to coax back to sleep, but seems to be resting peacefully for now.

(Our roommates, while VERY nice and sweet, are not super considerate. They have the bright lights on (at midnight), loud toys & TV, and the mom keeps talking to me! Not the worst thing in the world of course (and at least she's really nice), but dude. It's after midnight. TURN YOUR LIGHTS DOWN. Ah well.

If you can, please spare a good thought or prayer (whatever is your choosing) for my grandmother. She's nearly 80 & in the hospital pretty sick. There is some concern of lymphoma & she has a surgery in the morning to remove/biopsy some lymphs. [worry]

Off to bed now. *YAWN*

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. :)

Hi Jean!