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)

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.

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!

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. :)

Home from the hospital, WHEW

Well, we made it through our first admission & 24-hr vEEG. It actually went better than her first 24hr EEG went back in January. We originally asked for a crib, but once we got to the room, we realized that a regular bed would be much easier as then we could sit on the bed & hold her on our lap.

Turns out that was the right choice, and she did really, really well. Her EEG is still abnormal, however she doesn't have constant hypsarrhythmia. She does have a modified hyps while sleeping. It was tough that Lily didn't go to sleep until around 11:00pm on the 1st night (her normal bedtime is 7:00pm), and then she was awake from about 2:30-5:00am.


playing on the bed (you can really see how flexible she is in this picture!)


all smiles!

resting on mama


the hospital has a program where volunteers bring in their dogs for visits. We visited with a lovely woman & her chihuahua, Robert Henri (pronounced rho-bear, Ahn-ree)

On Wed, Thu & this morning, Lily was just in for observation during the start of the study. We received her 1st dose on Wednesday, mid-day. We don't know if it is placebo. We haven't noticed any huge changes in Lily, but she maybe just isn't titrated up to the appropriate dose yet.

Oh, and two days before we left, Lily got her DAFO's (orthotics). She's still trying to figure them out (and we haven't been great about working wiht her in them, given the road trip & hospital stay), but she looks wicked cute in them:


And a couple pictures of the roadtrip (and big-twin-brother, Hank):



My dad arrives tomorrow & Todd leaves on Sunday (boo hoo! We will miss him!). Lily doesn't have to be back at the hospital until Wednesday, and that admission is for only two nights. Hopefully we'll see some seizure improvement over the next few days, or if she's on placebo see some good improvement next week!

Big News around here

I'm such a bad blogger. I'm so sorry for not updating more often.

Lots has happened since my last update!

When we left off, we'd started Prednisone again. It seems to slowly be helping. We've bumped the dose up twice, so she's now at 20mg/day (when she started at 10mg/day). We definitely see a difference in her appetite & disposition (she's a bit grumpier), but it's NOTHING like ACTH life. She gets benadryl at bedtime to help with sleeping, but naps are often a struggle.

Her spasms have definitely decreased in frequency. She often has days with only one or two clusters (instead of 7-10 clusters daily that we were at). We email w/Dr. Bow Tie weekly to check in & keep the pressure on about the Ganaxolone study.

Speaking of the study, it STILL isn't ready to go yet. It's very frustrating! There's a bunch of red tape they're trying to get through ("who will paaaaaay for the nurse to do blood draws???") internally at Children's, and they're waiting on Marinus's final approval as well. I gently nudge Dr. Bow Tie about it each week, and hope that one day soon we'll have a start date.

The other Big News is that we bought a new house!!! We bought the house next door to my mom & dad! WHEE!! It is going to be wonderful living next door to them! The house is bigger too, which will be great for all our crap. There is a rec-room in the basement which will double as our TV room & playroom for the kids. I'm so excited to have a bigger, dedicated area for kid stuff. At my twin club's rummage sale this weekend, I bought a kitchen for the kids! Hank loves to play with the one at our Toddler Group through Lily's early intervention. I also bought a little pint-sized picnic table for our deck off the dining room. I can't wait to make peanut butter & jelly for the kids & eat outside this summer.

We close on May 9 & will probably move the following weekend. We were fortunatley able to work out a great situation with my brother & he and his girlfriend are buying our current hosue from us! This allows us to stay in our house until we close, and not have to do any cleaning/staging to have it listed with an agent. We're also able to take our time packing & getting ready to go.

The biggest drawback to moving is that LIly has to change centers where she gets her birth-to-three services. We're moving into a different county (we live about 6 blocks north of the county line; our new house is about 6 blocks SOUTH of the county line, oy!), and therefore we have to switch early intervention centers for Lily. :( :( :( :( I"m so sad to be leaving Little Red!! THey've been SOO good to us, and I'll be very sad to leave all our therapists. The new center, Wonderland, seems like it'll be great, but it's still a hard switch. It seems like they'll offer a bit more flexibility in terms of what kinds of therapy to give to LIly & where. For instance, we can sign up fro a class in the community, or at our local pool & coordinate it with our therapist & they'll go to the class with us. That woudl work really well as it would give me 1-on-1 time with Hank, plus Lily would get services in the "natural environment" (thank you NCLB! Grumble, grumble). The offer a Toddler class, but unfortunately it's full right now. We're on a waiting list but since we're lookign for two openings (they also take typically developing kids), it could be a while.

The BIGGEST bummer is that Little REd offers a preschool for their students once they turn two. My kids were going to go to it in the fall. It's twice a week for two hours each time. Wonderland doesn't have anything like that, which totally bums me out. I'm going to look into a couple other Birth to Three programs in our county, specifically Boyer Clinic, and the Experimental Education Unit at the UW as well. Wonderland is TERRIBLY convenient though, only about 1/4 mile away from our new house. I don't know. It's hard. She's going to age out of Birth to Three in a year & will matriculate into the school district, so I don't know if I really want to get super involved in a program that services Seattle Schools. However, the EEU has classes for SN & Typical kids too, so that'd be good. I think there's a waiting list though...

I know it will all work out for the best, but it's making me very sad to think about saying goodbye to our wonderful therapists.

The other thing we've had done since my last update is we had our opthamologist appointment at the beginnign of the month. We were thrilled to learn that Lily has PERFECT eye sight!!! No problems, no concerns, nothing. There aren't many things that we hear doctors say are "normal" about Lily, so it was thrilling to hear the doctor say, "Lily's eyes are perfectly normal & she sees as well as other kids her age!" WHEE!!!!!!!!

I expect the next few weeks to be very busy with our preparations to move, but I hope to keep the blog updated as we trasnition from Little Red to Wonderland. Since EI is such a big part of our life & schedule, it'll be good to keep it updated here.

New Trial Drug + Lily bloodwork

Late last week I was given a lead to the manufacturer of Ganaxolone, the med that Dr. Bow Tie wants to try with Lily. He's been working on getting a study at our hospital for Ganaxolone at least since Lily's 24-hr EEG. Well, the lead I got last week, from the owner of Infantile Spasms, was for the director of the clinical trials.

I emailed her yesterday to try & get Lily started on Ganaxolone from a different angle. She wasn't able to get Lily on the new med, but did provide a little more information about the study at our hospital than I've been able to get from Dr. Bow Tie. Basically, the study will be coming to our hospital, but not for about a couple months. In the mean time, if we wanted to start Lily on Ganaxolone, we'd have to transfer her care to Children's of Los Angeles & basically live in LA for two months as the study requires several 24-hour EEG's over a period of three weeks.

No, thank you.

So we'll wait until Seattle gets it.

Last week we had labs drawn for Lily after our surgery consult. I spoke w/the nurse today about the results. Everything, including all metabolic testing, is completely normal with two exceptions: Lily's RBC & WBC counts were a little low. The RBC's are only slightly low & they weren't concerned with that (just need to get Lily to eat more iron-rich foods). There was mild concern over the low WBC's. Apparently this can be a common side effect of AED's. Lily's level was 938 & they like to see 1500+. She (the nurse) was going to email Dr. Bow Tie about it. I told her that we have an appointment wiht him next Tuesday & to please call if we need to address it sooner.

The other piece to Lily's labs was that we checked her Topamax blood level. Therapeutic blood levels are 15-20. Last we checked, we were slightly above a 15, and we increased the dose a bit to really push the topamax to the fullest. Well, her level came back at 22.5. So, at a FULL load of topamax, she's still having 4-8 clusters of spams each day, so clearly that's not working for us.

So, next Tuesday we'll be discussing what, if anything, we do in the mean time before getting Ganaxolone, plus the WBC issue. The other biggie to discuss is whether Lily actually needs this skin/muscle biopsy surgery or not.

More info on that:
Basically, the ONLY test Lily hasn't had to find a specific cause of her spasms is the skin/muscle biopsy. This test is kind of the final step in ruling out a mitochondrial reason for the spasms. It involves taking a sample of muscle from the thigh (from a 1" incision), and a small sample of skin near the under arm (smaller than 1" incision).

At the same time, we'd also do a 3T-MRI which uses a bigger, stronger magnet to look for structural abnormalities in Lily's brain that would be the cause of her spasms (and potentially make her a surgical candidate).

ALL of Lily's labs & urinalysis have come back normal for metabolic/mitochondrial testing. The only thing indicating a mito disorder was when her 2nd MRI, about a year ago, showed signal changes in the deep tissue of her brain. We have since attributed this to a very rare (unpublished) side effect of the vigabatrin she was on at the time, weaned her off that drug, and the changes have resovled (thus, it was not a mito disease).

Since all of her labs have been normal, PLUS we have the PET scan which shows some evidence of coritcal displaysia (fancy name for structural abnormality in the brain), I'm feeling like putting Lily through a surgery isn't really necessary. Dr. Bow Tie is the expert at our hospital in mitochondrial disorders, so if he has very good reasoning for the test, I'll reconsider. But when Nurse Wonderful suggested the test (on his behalf), she indicated that he was himming & hawing about whether she really needed it. So if he wasn't convinced then, and now her newest round of labs is still normal, I'm gonna push back on that.

No sense subjecting Lily to surgery if it isn't 100% warranted.

For now, she continues to do well. She's had a rough 24 hours as far as seizures are concerned, but she's still playing & eating well. We had OT with Leah yesterday afternoon at Little Red Schoolhouse, and she did really well with taking toys out of containers (something we're working on with her). She had a longer attention span, despite having several clusters during therapy, than I've seen for a while.

The weather out here is simply glorious right now -- currently 67 & sunny. I think we'll play outside this afternoon.

Early Intervention

Today we had our annual IFSP (Individualized Family Serivce Plan) for Lily's Birth to Three program. We're required to meet annually to review Lily's progress & reassess her goals. In preparation for our meeting, I had Michelle do a screening test on Lily to get an idea of how big her delay is, and to see how far she'd progressed since we last did it (last May).

When Lily was first diagnosed & enrolled in EI, she was six months old and tested at about a 4-month old level (which made sense, because she was four months old when she started regressing & was diagnosed). Last May, when she was in really bad shape we did the screening she was at a 1-2 month old level.

Now, she tests between a 9 & 14 month old level, depending on the skill. She's highest in her adaptive skills (mostly due to self-feeding), and lowest in her motor and...something else, I can't remember.

Anyhow, that laid the ground work for today's meeting. The main points coming out of today's meeting are that we're adding occupational therapy to Lily's treatment, every other week. We're going to try & add a 2nd physical therapy every other week (while continuing weekly PT), but they have to get approval for funding on that one. We'll continue with speech therapy weekly.

Also, we had a great discussion about which group was best for Lily. The baby group is moving from 9:00am Fridays to 10:30am Fridays. The toddler group is moving to 9:00am on Wednesdays. It is really hard for us to be up & somewhere by 9:00am. I have late sleepers. Plus, my mom has Fridays off & generally helps with playgroup. Also, two other mom's in the baby group have babies with epilepsy (one is even another IS baby), and they are obvious good support & connections for me. However, in the fall Lily will be eligible for the preschool through EI & I want her to participate in that, and if moving to the toddler group, as a prepartory step for preschool, is the best for her then that's what we'll do.

Leah, who is our (new!) OT and also runs the preschool & groups said that she didn't think there was that much of a huge benefit to moving up to the toddler group especially considering the logistics & practicalities of me getting to a 9:00am group by myself, and the social support for me. So we decided to go with the Friday baby group and reevaluate if Lily needs more "challenging" group play around Spring Break time.

Overall it was a good meeting. I'll be able to post more about our specific goals once I get my copy of the IFSP.