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. :)
Showing posts with label Wonderland. Show all posts
Showing posts with label Wonderland. Show all posts
Thursday, January 17, 2008
Wednesday, June 6, 2007
BIG news on the study!
Well, after hearing that the Ganaxolone study won't be at CHOS until July, it dawned on me that Lily might age out of the study before it even gets going up here (the age limit is 2, & her 2nd birhtday is July 8).
So, last week we started scrambling to get Lily into a study elsewhere. After much consideration, we decided to go to Los Angeles & get Lily in the study at Children's Hospital Los Angeles.
Our original plan was to leave on June 16, however the coordinator called this afternoon & they've changed their dates & want us there on TUESDAY. AKK! So we're leaving THIS Saturday (6/9, yes in three days!) for a month in Sunny Southern California!!!
Lily will have three hospital admissions; the first will be for three nights beginning on 6/12, the second for three nights on 6/19, and the third for one night on 7/2. We'll leave to come home on 7/4 or 7/5.
We'll be staying in short term housing in a 2 bedroom apartment a few miles from the hospital. We're driving down so that we'll have our own car (renting a car is expensive!). Todd will be with us for the first and last weeks, and we're working on who will be with me the 2nd week. The 3rd week we don't have any clinic visits/admissions so I could be alone if we can't find anyone else, but we're working on a few other options for some help for at least a few days.
We're so, so grateful to have this opportunity to get a medication for Lily that will hopefully be a really good fit for her. I have to say, my hopes are somewhat high that it will work for her. Of course, all those parents of IS kids know that "high hopes" is a relative term; getting hopes up too high doesn't ever really happen.
Wow. So much to do in the next 72 hours!!!
PS -- Lily's DAFO's will be here on Thursday when our PT comes!! I really think having some AFO's will help Lily's walking IMMENSELY!!
So, last week we started scrambling to get Lily into a study elsewhere. After much consideration, we decided to go to Los Angeles & get Lily in the study at Children's Hospital Los Angeles.
Our original plan was to leave on June 16, however the coordinator called this afternoon & they've changed their dates & want us there on TUESDAY. AKK! So we're leaving THIS Saturday (6/9, yes in three days!) for a month in Sunny Southern California!!!
Lily will have three hospital admissions; the first will be for three nights beginning on 6/12, the second for three nights on 6/19, and the third for one night on 7/2. We'll leave to come home on 7/4 or 7/5.
We'll be staying in short term housing in a 2 bedroom apartment a few miles from the hospital. We're driving down so that we'll have our own car (renting a car is expensive!). Todd will be with us for the first and last weeks, and we're working on who will be with me the 2nd week. The 3rd week we don't have any clinic visits/admissions so I could be alone if we can't find anyone else, but we're working on a few other options for some help for at least a few days.
We're so, so grateful to have this opportunity to get a medication for Lily that will hopefully be a really good fit for her. I have to say, my hopes are somewhat high that it will work for her. Of course, all those parents of IS kids know that "high hopes" is a relative term; getting hopes up too high doesn't ever really happen.
Wow. So much to do in the next 72 hours!!!
PS -- Lily's DAFO's will be here on Thursday when our PT comes!! I really think having some AFO's will help Lily's walking IMMENSELY!!
Tuesday, April 17, 2007
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.
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.
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