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Thursday, March 31, 2011
Sunday, March 27, 2011
Grandma and Papa
Grandma and Papa came out for a visit with Miss Keira. Naveen was out of town and I had a pretty busy week at work so the three of them had fun hanging out in the city.
Some of the highlights of their visit include:
• looking at new cars for the V's
• playing in Keira's kitchen
• watching K at swimming lessons
• playing with Grandma's new ipad
• reading lots and lots of books!
• San Francisco Zoo
• legos and puzzles
• home cooked meals at home
• Stern's Grove/Ocean Beach
• K's new table and chairs
Play slideshow - 83
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Some of the highlights of their visit include:
• looking at new cars for the V's
• playing in Keira's kitchen
• watching K at swimming lessons
• playing with Grandma's new ipad
• reading lots and lots of books!
• San Francisco Zoo
• legos and puzzles
• home cooked meals at home
• Stern's Grove/Ocean Beach
• K's new table and chairs
Play slideshow - 83 View photos individually
Monday, March 21, 2011
A Visit from Uncle Rajeev!
Uncle Rajeev came out to SF for a visit this month. Although the weather was cold and rainy, we made the best of his visit by discovering the yummy brunch at Bar Tartine and going to the deYoung Museum for the day. We also did a lot of laughing and playing at home while Naveen cooked us a fancy steak dinner.
Keira really took to Uncle "Rajeem" as she called him and despite Naveen's attempts to have her call him Uncle Little Raj, Rajeem stuck. :)
We made the drive over to Berkley for some Sunday chaat at Viks before we had to say good-bye.
The weekend went by way too fast and we were all sad to drop Raj off at the airport, but as Keira would say, "You come back and play soon!"
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Keira really took to Uncle "Rajeem" as she called him and despite Naveen's attempts to have her call him Uncle Little Raj, Rajeem stuck. :)
We made the drive over to Berkley for some Sunday chaat at Viks before we had to say good-bye.
The weekend went by way too fast and we were all sad to drop Raj off at the airport, but as Keira would say, "You come back and play soon!"
Play slideshow - 45 View photos individually
Sunday, March 13, 2011
Naveen's new "lensbaby"
Naveen recently said he has been so busy with work that he hasn't been using his SLR to take pictures of Keira.... a few days later a new toy arrived in the mail. :) Now he is taking lots of pictures!
Keira and Abhishek were more than happy to allow him to practice his technique... enjoy!
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Tuesday, March 8, 2011
6th Treatment
We spent March 8th at LPCH for Keira's 6th Treatment. Showing up dressed in green, with our lucky shamrock socks on, we impressed all our nurses. As much as possible, we really try to make these long days fun for Keira, and being a teacher I have a lot of silly tshirts and socks for the holidays. Luckily, I also have a very supportive husband who will do just about anything to make his daughter smile. :)
Family Foot Photo
The day was super long but we made the best of it. We had a pretty steady stream of visitors who kept us well fed and entertained. The good news is that this was the last treatment where K will be receiving Cytoxin. This will help to shorten the remaining treatment days by a few hours. IVIg itself is still a very long process but we won't have the four hours of chemo and hydration after it anymore. Yay!
Also, as I mentioned in my last post, we are going to attempt to wean steroids again. Dr. Twist and Dr. Effinger agreed that it would be best to reduce her evening dose by half every other day. We will monitor her for two weeks and if things are still OK we will also reduce her morning dose by half on that second day.
Keira and Dr. Effinger
The goal will be to try to get K to an every other day steroid dosage. Being on an oral steroid for an extended period of time has many negative side effects to her little body and if we can at least give her a break on those off days it should help.
Our lucky little shamrock!
Play slideshow - 21
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Family Foot Photo
The day was super long but we made the best of it. We had a pretty steady stream of visitors who kept us well fed and entertained. The good news is that this was the last treatment where K will be receiving Cytoxin. This will help to shorten the remaining treatment days by a few hours. IVIg itself is still a very long process but we won't have the four hours of chemo and hydration after it anymore. Yay!
Also, as I mentioned in my last post, we are going to attempt to wean steroids again. Dr. Twist and Dr. Effinger agreed that it would be best to reduce her evening dose by half every other day. We will monitor her for two weeks and if things are still OK we will also reduce her morning dose by half on that second day.
Keira and Dr. Effinger
The goal will be to try to get K to an every other day steroid dosage. Being on an oral steroid for an extended period of time has many negative side effects to her little body and if we can at least give her a break on those off days it should help.
Our lucky little shamrock!
Play slideshow - 21 View photos individually
Monday, March 7, 2011
Clinic Visit
Today marked our 6th Clinic Visit with Dr. Effinger. Keira continues to amaze us all at how well she is responding to treatment and her determination to do all the things a kiddo her age should be doing at 22 months.
Starting tomorrow we will again taper her daily steroid. Dr. Effinger and Dr. Twist are still determining if we will cut the daily dose in half, only giving K 1ml twice daily or if we should give 2ml twice daily and then the following day only give the 2ml one time. We will find out the verdict tomorrow and keep our fingers crossed that K's body is ready for this medication reduction. It would be so good for her body to have a break from the steroids so that she can start growing taller again, but as we discovered in January the weaning process is not to be taken lightly. Positive thoughts!!
Another big change after this 6 month medication milestone is that March is the last month Keira will be receiving Cytoxin. Starting in April, K will only receive IVIg and even then only every other month. This means that in May we will only be going to LPCH for her Clinic Visit. After being married to Naveen for almost 5 years, I think that his superstitious nature is starting to rub off on me as I feel like we are getting too far ahead of ourselves, but Dr. Effinger is confident that K will do fine and if we see any flare ups we will tweak her steroid dosage to keep things under control. Again positive thoughts!!
The next follow up MRI is scheduled for Monday, March 28th. We will also be scheduling a follow up with the Neuro-Pshychologist to revisit where K is at developmentally. As you might recall, we did a baseline for this back in October before Keira's very first treatment. It should be interesting to see how she has grown.
Looking back, it is crazy that it has already been 6 months since our life turned up-side down. I am not going to lie - it has been really hard on us - but with the love and support of all of you we will stay strong and continue to strive for a balanced life where the fear of an OMS flare up does not prevent us from enjoying all the good moments together. :)
Starting tomorrow we will again taper her daily steroid. Dr. Effinger and Dr. Twist are still determining if we will cut the daily dose in half, only giving K 1ml twice daily or if we should give 2ml twice daily and then the following day only give the 2ml one time. We will find out the verdict tomorrow and keep our fingers crossed that K's body is ready for this medication reduction. It would be so good for her body to have a break from the steroids so that she can start growing taller again, but as we discovered in January the weaning process is not to be taken lightly. Positive thoughts!!
Another big change after this 6 month medication milestone is that March is the last month Keira will be receiving Cytoxin. Starting in April, K will only receive IVIg and even then only every other month. This means that in May we will only be going to LPCH for her Clinic Visit. After being married to Naveen for almost 5 years, I think that his superstitious nature is starting to rub off on me as I feel like we are getting too far ahead of ourselves, but Dr. Effinger is confident that K will do fine and if we see any flare ups we will tweak her steroid dosage to keep things under control. Again positive thoughts!!
The next follow up MRI is scheduled for Monday, March 28th. We will also be scheduling a follow up with the Neuro-Pshychologist to revisit where K is at developmentally. As you might recall, we did a baseline for this back in October before Keira's very first treatment. It should be interesting to see how she has grown.
Looking back, it is crazy that it has already been 6 months since our life turned up-side down. I am not going to lie - it has been really hard on us - but with the love and support of all of you we will stay strong and continue to strive for a balanced life where the fear of an OMS flare up does not prevent us from enjoying all the good moments together. :)
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