Lots of blood and a "chubby" lip - as Keira reminded me, "we don't say "fat" because that's not nice." Luckily Akemi is OK and Keira thought that a popsicle might help her feel even better.
Not sure if Akemi likes it...
but Keira sure does!
Saturday, March 30, 2013
Time for a popsicle!
Akemi took a fall after Keira's swim class and landed on her face. :(
Lots of blood and a "chubby" lip - as Keira reminded me, "we don't say "fat" because that's not nice." Luckily Akemi is OK and Keira thought that a popsicle might help her feel even better.
Not sure if Akemi likes it...
but Keira sure does!
Lots of blood and a "chubby" lip - as Keira reminded me, "we don't say "fat" because that's not nice." Luckily Akemi is OK and Keira thought that a popsicle might help her feel even better.
Not sure if Akemi likes it...
but Keira sure does!
Friday, March 29, 2013
Spring Performance
We were so proud of Keira at the Spring Performance today. She's grown up a lot since last year and was in charge of "helping" the two little ones on either side of her stay on their spots. Mrs. Louise taped the entire show for the parents but I couldn't resist getting a couple of the songs on video so that I could share them with our family and friends. We're always amazed at how well these little kiddos learn their songs and dance moves!
Little Bunny
The Raindrop Song
Tuesday, March 26, 2013
Acme Bread
It's always fun when I can join Keira on her field trips. We had a great time learning how bread is made at Acme Bread in Mountain View. The tour was very informative and the Little Stompers were very well behaved. The best part, each kiddo got their very own loaf of bread. Yum!
Play slideshow - 22
View photos in flickr
Play slideshow - 22 View photos in flickr
ophthalmologist
All things considered Keira did great at the ophthalmologist today. We've had to start going for check-ins with Dr. Alcorn every six months since cataracts can be a side effect of long term steroids.
Thankfully, Keira's eyes looked clear today.
It was a bit of a reminder though how little she really is. I think we take for granted how well she handles all these appointments. We've been to see Dr. Alcorn a handful of times and it's always gone smoothly. We talked a bit about the procedure for the visit but I never knew that the dilating drops hurt. She's never complained before, however, today the drops really bothered her.
Keira was super cooperative (like I said we talked about how she was going to get these drops). She put her head back, opened her eyes wide and was waiting patiently. Sadly, today she said it "burned" her eyes. :( She was more than a little unhappy and as much as she tried to take deep breathes and hold my hand tight we ended up having to hold her down so they could get the drops in.... 3 different drops in each eye. Poor girl.. and then the nurse kept telling her not to rub her eyes or cry because then we'd have to do it again!
She earned her stickers for sure. And she's pretty darn cute in those sunglasses. Keira remembered that her eyes hurt after the drops last time so she wanted to bring her own sunglasses. :)
Saturday, March 23, 2013
Happy Hollow & Pizza Night
We spent the Saturday after Keira's dex pulse at Happy Hollow. This was the first time she's been back since she's passed the 36 inch mark. Last time we were here Keira wasn't able to go on any of the big kid rides.
She was super excited to be able to go on the dragon roller coaster.
Akemi was also big enough to go on some of the rides. It's crazy how big they get, and so quickly!
Naveen was starting to feel left out so Keira and Soraya let him come with on the Frog Hopper ride.
Happy Hollow wouldn't be complete without a ride on the merry go round.
Keira chose dinner - homemade pizzas on the grill. Yum!
Play slideshow - 23
View photos in flickr
Akemi was also big enough to go on some of the rides. It's crazy how big they get, and so quickly!
Naveen was starting to feel left out so Keira and Soraya let him come with on the Frog Hopper ride.
Happy Hollow wouldn't be complete without a ride on the merry go round.
Keira chose dinner - homemade pizzas on the grill. Yum!
Play slideshow - 23 View photos in flickr
Thursday, March 21, 2013
Dex Pulse #10
This Dex pulse comes with increased worry.
Keira's behavior has been a bit off and there were several small things noticed the last two weeks. A big part of me thinks (hopes) that it's just part of her being older and more independent, but then there is that nagging suspicion that it might be early signs of OMS still being active. We've been here before and we know we just have to wait to be certain, but I don't think it has gotten any easier. :(
I love that our doctors are so involved and spend the time to think through scenarios with us when stuff like this happens. Unfortunately, we're not thrilled with what our next step might be. If Keira does start showing more signs of OMS, we would have to add Rituxan to her drug therapies. This is a "big gun" in terms of medication and has a lot of side effects.
She's been doing SO WELL that I hate to think we have to do something this big, but we wouldn't be good parents if we weren't mentally prepared for what a relapse would mean for her and the rest of the family.
We are continuing with the Prednisone wean this month. There is really no reason to keep her on it since it's such a low dose, however, we will now give her hydrocortisone daily until we're sure her remaining adrenal gland is making steroids again.
Several people have asked why we wouldn't just up her steroids again which is an incremental adjustment to her current course of treatment, and has known to bring her OMS symptoms into check.
The reason is that we are at a stage now where we are fighting TWO battles: OMS Symptoms AND the long-term affects of steroids. Keira has been on Prednisone for nearly 2.5 years of her 3.5 year-old life. While Prednisone has been seemingly successful in addressing OMS symptoms, it simply cannot be a long-term solution, which is why we initially started weaning it about 2 years ago, and very slowly got down to a dosage that we simply couldn't wean beyond without causing a flare-up. This was about 10 months ago when we added Dexamethesone as a pulse-dose (every 28 days) to her every-other-day Prednisone regimen. The reason we did this was to see if the Dex pulses would counteract OMS activity while we continued to wean off of Prednisone. This may seem counter-intuitive (why add one steroid to get off of another?), but the pulse doses have fewer long-term issues than an every-other-day dose, and hopefully the pulses of Dex would allow us to wean off of the every-other-day Prednisone. And for the past 10 months it mostly has... We're down to the lowest dosage of Prednisone we've been and in fact, we think that the Prednisone is so low that it likely isn't even having an affect.
However, we've been at this stage for 2 months now and are seeing several small signs of flare-up (behavioral issues, minor instability, etc.) starting to surface. So as we wean off of Prednisone, the big question is what we do if Keira can't be stable with the Dex pulses alone? Going back up on Prednisone isn't really an option because while we know that it will likely work, we're trying to find a long-term solution here. Increasing the Dex pulses (bi-monthly perhaps) is one option and we could try to push for that, but again, that would introduce a dependency on Dex (albeit less of an issue given the dosage frequency relative to Prednisone, it's still an ongoing steroid dependency).
Rituxan is another drug that has been used in the US and Europe to treat OMS. It is a "big gun" when it comes to drugs. It is typically used to fight lymphoma, cancer of the immune system, by attacking and obliterating B-Cells, which is where lymphomas are generated. While we don't know the exact auto-immune mechanism of OMS, we do know that B-Cells are likely involved because uses of Rituxan for OMS patients have seen generally favorable affects (implying that by wiping out B-Cells, we're wiping out the generation of the auto-immune antibodies causing OMS).
(Thanks Naveen for the well written medical info!)
Keira is an amazing little girl. We feel blessed that she has been doing so well and that she has so many people who love her and look out for her well being.
She makes me want to do more for all the children that have to deal with the uncertainty of OMS. We're trying to do our part to raise awareness and money for this rare and underfunded disease, but it's hard to find the time and energy after working all day and being a mom. :(
As many of you know we are hosting the 2nd Annual One More Step hike in Golden Gate Park on April 28th. Please consider hiking with us or donating to this worthy cause!
Keira's behavior has been a bit off and there were several small things noticed the last two weeks. A big part of me thinks (hopes) that it's just part of her being older and more independent, but then there is that nagging suspicion that it might be early signs of OMS still being active. We've been here before and we know we just have to wait to be certain, but I don't think it has gotten any easier. :(
I love that our doctors are so involved and spend the time to think through scenarios with us when stuff like this happens. Unfortunately, we're not thrilled with what our next step might be. If Keira does start showing more signs of OMS, we would have to add Rituxan to her drug therapies. This is a "big gun" in terms of medication and has a lot of side effects.
She's been doing SO WELL that I hate to think we have to do something this big, but we wouldn't be good parents if we weren't mentally prepared for what a relapse would mean for her and the rest of the family.
We are continuing with the Prednisone wean this month. There is really no reason to keep her on it since it's such a low dose, however, we will now give her hydrocortisone daily until we're sure her remaining adrenal gland is making steroids again.
Several people have asked why we wouldn't just up her steroids again which is an incremental adjustment to her current course of treatment, and has known to bring her OMS symptoms into check.
The reason is that we are at a stage now where we are fighting TWO battles: OMS Symptoms AND the long-term affects of steroids. Keira has been on Prednisone for nearly 2.5 years of her 3.5 year-old life. While Prednisone has been seemingly successful in addressing OMS symptoms, it simply cannot be a long-term solution, which is why we initially started weaning it about 2 years ago, and very slowly got down to a dosage that we simply couldn't wean beyond without causing a flare-up. This was about 10 months ago when we added Dexamethesone as a pulse-dose (every 28 days) to her every-other-day Prednisone regimen. The reason we did this was to see if the Dex pulses would counteract OMS activity while we continued to wean off of Prednisone. This may seem counter-intuitive (why add one steroid to get off of another?), but the pulse doses have fewer long-term issues than an every-other-day dose, and hopefully the pulses of Dex would allow us to wean off of the every-other-day Prednisone. And for the past 10 months it mostly has... We're down to the lowest dosage of Prednisone we've been and in fact, we think that the Prednisone is so low that it likely isn't even having an affect.
However, we've been at this stage for 2 months now and are seeing several small signs of flare-up (behavioral issues, minor instability, etc.) starting to surface. So as we wean off of Prednisone, the big question is what we do if Keira can't be stable with the Dex pulses alone? Going back up on Prednisone isn't really an option because while we know that it will likely work, we're trying to find a long-term solution here. Increasing the Dex pulses (bi-monthly perhaps) is one option and we could try to push for that, but again, that would introduce a dependency on Dex (albeit less of an issue given the dosage frequency relative to Prednisone, it's still an ongoing steroid dependency).
Rituxan is another drug that has been used in the US and Europe to treat OMS. It is a "big gun" when it comes to drugs. It is typically used to fight lymphoma, cancer of the immune system, by attacking and obliterating B-Cells, which is where lymphomas are generated. While we don't know the exact auto-immune mechanism of OMS, we do know that B-Cells are likely involved because uses of Rituxan for OMS patients have seen generally favorable affects (implying that by wiping out B-Cells, we're wiping out the generation of the auto-immune antibodies causing OMS).
(Thanks Naveen for the well written medical info!)
Keira is an amazing little girl. We feel blessed that she has been doing so well and that she has so many people who love her and look out for her well being.
She makes me want to do more for all the children that have to deal with the uncertainty of OMS. We're trying to do our part to raise awareness and money for this rare and underfunded disease, but it's hard to find the time and energy after working all day and being a mom. :(
As many of you know we are hosting the 2nd Annual One More Step hike in Golden Gate Park on April 28th. Please consider hiking with us or donating to this worthy cause!
Sunday, March 17, 2013
St. Patrick's Day
The girls were awfully cute in their green today.
We made an Irish lamb stew... but I think the real hit were the shamrock cookies.
Play slideshow - 12
View photos in flickr
We made an Irish lamb stew... but I think the real hit were the shamrock cookies.
Play slideshow - 12
View photos in flickr
Tuesday, March 5, 2013
Grandma and Boo Boo
The girls were super excited to have Grandma and Boo Boo out for a visit this month.
We took Grandma up to the Academy of Sciences. Keira is an expert at showing people around.
The week was full of playing
and reading books
Keira took Grandma and Boo Boo to the Children's Discovery Museum for a special day of fun.
We also made cupcakes for Grandma's birthday.
Keira was big into the sprinkles, as you would expect with an almost 4 year old.
It was great to be able to spend a birthday with my mom. We feel blessed that she's doing so well and is able to come out and spend time with us in California!
Play slideshow - 60
View photos in flickr
The week was full of playing
and reading books
Keira took Grandma and Boo Boo to the Children's Discovery Museum for a special day of fun.
We also made cupcakes for Grandma's birthday.
Keira was big into the sprinkles, as you would expect with an almost 4 year old.
It was great to be able to spend a birthday with my mom. We feel blessed that she's doing so well and is able to come out and spend time with us in California!
Play slideshow - 60 View photos in flickr
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