Tuesday, January 31, 2012
Friday, January 27, 2012
Clinic Visit
We had our monthly Clinic Visit at LPCH this morning. It's crazy to think that I had Akemi 4 weeks ago. Last month we weren't sure if I was having contractions or if it was going to be a false alarm. We all know how that turned out. :)
As you would expect with a new baby our life has been full of adjustments and new routines. Keira loves being a big sister and is so sweet to Akemi. She likes helping and often asks if she can "pet" her little sister. However, adding a new member to the V Clan also means less 1:1 time for Keira and we have been working hard to keep her in her routine as much as possible so that we can distinguish between possible OMS behavior symptoms or just 2 1/2 year old behavior on steroids.
Behavior is always the hardest aspect of all the OMS symptoms to figure out but we have noticed that when Keira gets upset her tantrums last way longer than we think they should and they are pretty intense. She has a really hard time calming herself down. Thankfully I was able to get an appointment with her psychologist before she goes on maternity leave and I hope talking with her will help give us some new strategies and reassurance that this too falls in the normal range. We will see. Luckily with any little kiddo, as soon as the drama is over, she is back to her sweet self and is ready to move on. :)
After much discussion with the doctors, we're staying the course with the increased prednisone for another month. Since the hand tremors went away, the two areas we have been most concerned with are behavior and her gross motor (it still seems like she falls more frequently than other kids her age). The doctors shared that this intense behavior/longer tantrums happens with other children battling cancer who are on steroids so it is very likely not OMS but just K's body trying to deal with the medication. As far as the falling is concerned it is so hard to tell. During my mom's recent visit she said, "Keira is like a bull in a china shop" and it's so true! Keira moves quickly and runs into things/trips on toys. Most of the time we feel like she is just not paying attention to her surroundings but sometimes it seems like she will take a fall for no apparent reason. We've really been working on using our "walking feet" but such an energetic little person forgets that a lot. :)
For the next few months we are going to start more frequent check-ins with physical therapy. This will be a great way to monitor her gross motor skills a little more closely. It will be nice to have someone else look at her movements again to see if there is anything "off". Of course we are hoping that our little "bull" is still learning how to navigate her surroundings but with OMS you can't take any chances that the disease is actively attacking her brain.
Next steps... If all stays the same we will try to once again wean the prednisone without adding any other medications. We have a few other options but all felt like giving it one more shot without anything else made the most sense and would have the least long term side effects, but there is always plan b, plan c and plan d.
As always thanks for all the love and positive thoughts
As you would expect with a new baby our life has been full of adjustments and new routines. Keira loves being a big sister and is so sweet to Akemi. She likes helping and often asks if she can "pet" her little sister. However, adding a new member to the V Clan also means less 1:1 time for Keira and we have been working hard to keep her in her routine as much as possible so that we can distinguish between possible OMS behavior symptoms or just 2 1/2 year old behavior on steroids.
Behavior is always the hardest aspect of all the OMS symptoms to figure out but we have noticed that when Keira gets upset her tantrums last way longer than we think they should and they are pretty intense. She has a really hard time calming herself down. Thankfully I was able to get an appointment with her psychologist before she goes on maternity leave and I hope talking with her will help give us some new strategies and reassurance that this too falls in the normal range. We will see. Luckily with any little kiddo, as soon as the drama is over, she is back to her sweet self and is ready to move on. :)
After much discussion with the doctors, we're staying the course with the increased prednisone for another month. Since the hand tremors went away, the two areas we have been most concerned with are behavior and her gross motor (it still seems like she falls more frequently than other kids her age). The doctors shared that this intense behavior/longer tantrums happens with other children battling cancer who are on steroids so it is very likely not OMS but just K's body trying to deal with the medication. As far as the falling is concerned it is so hard to tell. During my mom's recent visit she said, "Keira is like a bull in a china shop" and it's so true! Keira moves quickly and runs into things/trips on toys. Most of the time we feel like she is just not paying attention to her surroundings but sometimes it seems like she will take a fall for no apparent reason. We've really been working on using our "walking feet" but such an energetic little person forgets that a lot. :)
For the next few months we are going to start more frequent check-ins with physical therapy. This will be a great way to monitor her gross motor skills a little more closely. It will be nice to have someone else look at her movements again to see if there is anything "off". Of course we are hoping that our little "bull" is still learning how to navigate her surroundings but with OMS you can't take any chances that the disease is actively attacking her brain.
Next steps... If all stays the same we will try to once again wean the prednisone without adding any other medications. We have a few other options but all felt like giving it one more shot without anything else made the most sense and would have the least long term side effects, but there is always plan b, plan c and plan d.
As always thanks for all the love and positive thoughts
Saturday, January 21, 2012
Yay for Grandma!
Although my dad had to head back to IL for work, my mom was able to stay and help for another week. It's so nice to have an extra set of hands to help around the house, and it was special to be able to spend some 1:1 time with my mom (in between all the chaos!) We worked really hard to get Keira back into her routine and get me comfortable managing two kids. Overall, I think we were successful!
Play slideshow - 31
View photos in flickr
Play slideshow - 31 View photos in flickr
Tuesday, January 17, 2012
Grandma and Papa's Visit
As I looked through the pictures we took this past week I think it's easy to say the theme would be, "Cuddles with the Kiddos". Keira is extra loving and cuddly since Akemi is getting so much snuggle time. No complaints here. :)
It was great having Grandma and Papa here to help us try and get back into a routine. It was so nice to have extra hands to help with meals, laundry, cleaning, playing with Keira and of course holding Akemi.
Play slideshow - 38 View photos in flickr
Sunday, January 15, 2012
Akemi's 1st Bath
Keira was super excited when Akemi's umbilical cord fell off so that we could give her an official bath.
Akemi looks a little nervous,
but Keira was a good helper, very gentle and patient.
Yay - all clean!
A little Keira time
Keira has been quite understanding for a 2 1/2 year old... all of a sudden she has to share her parents with her little sister! We have heard that it's super important, especially for the first month, to make Keira still feel like she is numero uno. So when the weather was cooperative we all made a beeline for the park. As you can see, K had a great time and I don't think Akemi even made it out of the stroller to look around.
Fun at the Park!
Keira also requested a special day with Grandma and Papa. We've been careful to keep her in her school routine as much as possible but we figured a Friday off wouldn't hurt anyone. Akemi and mom were invited to brunch but then the day was all about K.
Day at the Zoo
Fun at the Park!
Keira also requested a special day with Grandma and Papa. We've been careful to keep her in her school routine as much as possible but we figured a Friday off wouldn't hurt anyone. Akemi and mom were invited to brunch but then the day was all about K.
Day at the Zoo
Friday, January 6, 2012
Mittens!
Keira was super excited to get a special "big sister" present from the Barboza's. The baby has been getting lots of new clothes, books, etc. and Keira has actually been really good about not being jealous. This gift was something just for her and it's obvious that Maya knows what Keira likes.
Check out that smile! :)
Play slideshow - 5
View photos in flickr
Check out that smile! :)
Play slideshow - 5
View photos in flickr
First Days Home with Akemi
We promised Keira that once Akemi made her appearance we would celebrate her birthday with cupcakes. Keira ate her cupcake and then asked if she could eat Akemi's as well since she's too little to eat it herself. :)
Akemi also gave Keira a special big sister gift.
K was impressed that she already knew she liked panda bears.
Now that Keira is a big sister, she insists on helping with the chores.
Be sure to check out some of the other pictures of our newest family member.
It's amazing how tiny they are in the beginning!
Play slideshow - 27
View photos in flickr
Akemi also gave Keira a special big sister gift.
K was impressed that she already knew she liked panda bears.
Now that Keira is a big sister, she insists on helping with the chores.
Be sure to check out some of the other pictures of our newest family member.
It's amazing how tiny they are in the beginning!
Play slideshow - 27 View photos in flickr
Tuesday, January 3, 2012
Discharge Day!
Naveen bought Keira and Akemi these cute dragon socks for Christmas.
They look like leg warmers on Akemi!
We're all smiles as we get ready to head home with our little sweet pea!
The car seat looks HUGE!
Let's get out of here
Buckled in and ready to go home.
Play slideshow - 15
View photos in flickr
They look like leg warmers on Akemi!
We're all smiles as we get ready to head home with our little sweet pea!
The car seat looks HUGE!
Let's get out of here
Buckled in and ready to go home.
Play slideshow - 15 View photos in flickr
VIDEO: Akemi Waking, Getting Hungry
Here's a video of little Akemi waking up, doing cute stuff, making funny faces, and getting hungry.
VIDEO: Keira Meets Akemi
Keira was beyond excited to meet her little sister for the first time. She's been honing in her big sister skills on Elmo, Bear, and her new doll that she got for Xmas, so she was pretty eager to put these skills to test. So much so that she was a little frustrated at Crystal for not letting her do everything "all by her self".
Monday, January 2, 2012
Akemi and Keira Meet
We weren't quite sure exactly how Keira would react to seeing Akemi for the first time. We've tried all along to make Keira aware and interested in the arrival of her little sister, but with kids, you never really know what type of mental image they create nor what to expect.
It was heartwarming to see that Keira was very excited and endearing towards her new little sister. So much so that she just thought that she could take over with holding, hugging, and feeding all by herself.
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