Thursday, November 26, 2009

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.

video

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.

video

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)

Tuesday, September 8, 2009

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!

Tuesday, September 1, 2009

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!

Sunday, August 30, 2009

Raffle Results!

About a month ago, my wonderful cousin gave us a Seattle Sounders jersey signed by all the players on the team to auction off on eBay, and use that money for Lily's hippotherapy. I asked my brother for a little help writing the auction description, and he had an idea to actually run a raffle for the jersey. He took the idea and ran with it, and tonight we pulled the winning ticket.

The best news? John raised $525, enough for FIVE hippotherapy sessions for Lily! We are so incredibly grateful and amazed at how generous people were.


THANK YOU!!!


video

Friday, August 28, 2009

The proverbial "How can we help" question, ANSWERED!

We often get asked, "How can we help?" or "Let us know if we can help out in any way!" We are so fortunate to have such a wide and supportive network.

It can be hard for families who are in the middle of raising a special needs kiddo to come up with specific things that folks can do to help, but the bottom line is we ALWAYS need help!

Lily's is making great strides this year with her new therapies and medications. Unfortunately, even with (arguably) the best insurance in the company, it doesn't cover everything and our budget is maxed out.

HERE'S HOW YOU CAN HELP
I (Katie) have become an Independent Consultant with Discovery Toys. Ever heard of them? AWESOME toys where kids learn by playing. Fantastic quality with a lifetime guarantee. I played with Discovery Toys when I was little and I think we still have several of the toy sets!

I would love to host a party for anyone in the greater Seattle area, or feel free to shop directly through my website: http://www.twintastictoys.com/.


100% of the proceeds from these sales go directly toward offsetting the cost of Lily's therapy. This isn't a little endeavor of mine to pay for pedicures and lattes (although that would be nice!). This is 100% intended to help pay for therapy for Lily. If it is successful enough, we'd like to add therapy hours someday & see how much more progress Lily can make!


www.twintastictoys.com

THANK YOU!


Friday, August 14, 2009

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!!!!
video

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:
video

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.)

Friday, June 12, 2009

Required Reading

I belong to a fantastic group out here for families with kids who have special needs. An email came across the group yesterday with a link to this blog post that absoultely had me in tears at the end.

I can only hope to write so well some day.

Welcome to the Club

My dear friend,

I am so sorry for your pain.

Don’t worry; no one else sees it, I promise. To the rest of the world, you’re fine. But when you’ve been there, you can’t miss it.

I see it in your eyes. That awful, combustible mixture of heart-wrenching pain and abject fear. God, I remember the fear.

I see it in the weight of that invisible cloak that you wear. I remember the coarseness of its fabric on my skin. Like raw wool in the middle of the desert. You see, it was mine for a time.

I never would have wanted to pass it on to you, my love. I remember so well suffocating under the weight of it, struggling for breath, fighting to throw it off while wrapping myself in its awful warmth, clutching its worn edges for dear life.

I know that it feels like it’s permanent, fixed. But one day down the line you will wake up and find that you’ve left it next to the bed. Eventually, you’ll hang it in the closet. You’ll visit it now and then. You’ll try it on for size. You’ll run your fingers over the fabric and remember when you lived in it, when it was constant, when you couldn’t take it off and leave it behind. But soon days will go by before you wear it again, then weeks, then months.

I know you are staring down what looks to be an impossibly steep learning curve. I know it looks like an immovable mountain. It is not. I know you don’t believe me, but step by step you will climb until suddenly, without warning, you will look down. You will see how far you’ve come. You’ll breathe. I promise. You might even be able to take in the view.

You will doubt yourself. You won’t trust your instincts right away. You will be afraid that you don’t have the capacity to be what your baby will need you to be. Worse, you’ll think that you don’t even know what she needs you to be. You do. I promise. You will.

When you became a mother, you held that tiny baby girl in your arms and in an instant, she filled your heart. You were overwhelmed with love. The kind of love you never expected. The kind that knocks the wind out of you. The kind of all encompassing love that you think couldn’t possibly leave room for any other. But it did.

When your son was born, you looked into those big blue eyes and he crawled right into your heart. He made room for himself, didn’t he? He carved out a space all his own. Suddenly your heart was just bigger. And then again when your youngest was born. She made herself right at home there too.

That’s how it happens. When you need capacity you find it. Your heart expands. It just does. It’s elastic. I promise.

You are so much stronger than you think you are. Trust me. I know you. Hell, I am you.

You will find people in your life who get it and some that don’t. You’ll find some that want to get it and some that never will. You’ll find a closeness with people you never thought you had anything in common with. You’ll find comfort and relief with friends who speak your new language. You’ll find your village.

You’ll change. One day you’ll notice a shift. You’ll realize that certain words have dropped out of your lexicon. The ones you hadn’t ever thought could be hurtful. Dude, that’s retarded. Never again. You won’t laugh at vulnerability. You’ll see the world through a lens of sensitivity. The people around you will notice. You’ll change them too.

You will learn to ask for help. You’ll have to. It won’t be easy. You’ll forget sometimes. Life will remind you.

You will read more than you can process. You’ll buy books that you can’t handle reading. You’ll feel guilty that they’re sitting by the side of the bed unopened. Take small bites. The information isn’t going anywhere. Let your heart heal. It will. Breathe. You can.

You will blame yourself. You’ll think you missed signs you should have seen. You’ll be convinced that you should have known. That you should have somehow gotten help earlier. You couldn’t have known. Don’t let yourself live there for long.

You will dig deep and find reserves of energy you never would have believed you had. You will run on adrenaline and crash into dreamless sleep. But you will come through it. I swear, you will. You will find a rhythm.

You will neglect yourself. You will suddenly realize that you haven’t stopped moving. You’ve missed the gym. You’ve taken care of everyone but you. You will forget how important it is to take care of yourself. Listen to me. If you hear nothing else, hear this. You MUST take care of yourself. You are no use to anyone unless you are healthy. I mean that holistically, my friend. HEALTHY. Nourished, rested, soul-fed. Your children deserve that example.

A friend will force you to take a walk. You will go outside. You will look at the sky. Follow the clouds upward. Try to find where they end. You’ll need that. You’ll need the air. You’ll need to remember how small we all really are.

You will question your faith. Or find it. Maybe both.

You will never, ever take progress for granted. Every milestone met, no matter what the timing, will be cause for celebration. Every baby step will be a quantum leap. You will find the people who understand that. You will revel in their support and love and shared excitement.

You will encounter people who care for your child in ways that restore your faith in humanity. You will cherish the teachers and therapists and caregivers who see past your child’s challenges and who truly understand her strengths. They will feel like family.

You will examine and re-examine every one of your own insecurities. You will recognize some of your child’s challenges as your own. You will get to know yourself as you get to know your child. You will look to the tools you have used to mitigate your own challenges. You will share them. You will both be better for it.

You will come to understand that there are gifts in all of this. Tolerance, compassion, understanding. Precious, life altering gifts.

You will worry about your other children. You will feel like you’re not giving them enough time. You will find the time. Yes, you will. No, really. You will. You will discover that the time that means something to them is not big. It’s not a trip to the circus. It doesn’t involve planning. It’s free. You will forget the dog and pony shows. Instead, you will find fifteen minutes before bed. You will close the door. You will sit on the floor. You’ll play Barbies with your daughter or Legos with your son (or vice versa). You’ll talk. You’ll listen. You’ll listen some more. You’ll start to believe they’ll be OK. And they will. You will be a better parent for all of it.

You will find the tools that you need. You will take bits and pieces of different theories and practices. You’ll talk to parents and doctors and therapists. You’ll take something from each of them. You’ll even find value in those you don’t agree with at all. Sometimes the most. From the scraps that you gather, you will start to build your child’s quilt. A little of this, a little of that, a lot of love.

You will speak hesitantly at first, but you’ll find your voice. You will come to see that no one knows your child better than you do. You will respectfully listen to the experts in each field. You will value their experience and their knowledge. But you will ultimately remember that while they are the experts in science, you are the expert in your child.

You will think you can’t handle it. You will be wrong.

This is not an easy road, but its rewards are tremendous. It’s joys are the very sweetest of life’s nectar. You will drink them in and taste and smell and feel every last drop of them.

You will be OK.

You will help your sweet girl be far better than OK. You will show her boundless love. She will know that she is accepted and cherished and celebrated for every last morsel of who she is. She will know that her Mama’s there at every turn. She will believe in herself as you believe in her. She will astound you. Over and over and over again. She will teach you far more than you teach her. She will fly.

You will be OK.

And I will be here for you. Every step of the way.

With love,

Jess

Saturday, May 30, 2009

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.

Tuesday, May 26, 2009

I have much to catch up on...

I have so much to catch up on. Mostly, Lily is just doing amazing right now. She's really exploding with development, and I just couldn't be prouder.

Despite all of that, I've had a relatively low month. I realize that I shy away from posting during the (my) down periods. Having a special needs kiddo is so very, very isolating and lonely at times, that i tend to pull away from everything which just makes it worse.

But my dear friend Danielle reminds me in her post that we need to write about and share it all, because that *IS* life. Life is up and down, and it's not right to just paint a pretty picture of what life with my little epilepsy, autistic baby is like.

So, I'll try to be better about being real.

BUT for now... PLEASE keep my good friend Elaine and her dear daughter Sophie in your thoughts. Sophie is in Detroit havining surgery to hopefully stop her seizures once and for all. She's through the first phase with flying colors, and I"m just so proud of Elaine for continuing to advocate for Sophie, and SOOOO proud of Sophie for being so strong and brave, and proud of her tenacity for fighting this horrible disease.

Wednesday, April 15, 2009

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.