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Sunday, July 24, 2011
Family Fun at the beach!
To celebrate a successful treatment, Keira wanted to go to the beach. We located her beach bucket and shovel and took off for the day. Lucky for me, Naveen thinks the Pacific Ocean is warm, so he was more than happy to take K into the water. (She must take after him!) She was quite interested in watching the surfers this time... I predict she will have her own wetsuit next summer.
Play slideshow - 10
View photos individually
Play slideshow - 10 View photos individually
Friday, July 22, 2011
9th Treatment
The day started out with our visit from Dr. Effinger. Since we are only doing IVIg we have combined our Clinic Visit and Treatment Day together, which makes for a long day, but only one visit a month.
Keira and her dad wore their matching tshirts (K's gift to him for Father's Day this year) and I made chocolate chip cookies.
Normally, we do not let Keira eat cookies for breakfast, but when you are stuck in a hospital room all day, I think the regular rules go out the window. :)
Here's a picture after Keira's 5th cookie of the morning.
The IV took two pokes this month. We tried to tell K that two pokes when you are two is cool, but we weren't able to convince her. :)
It seems like the older she gets the less tolerant of these procedures she is becoming, but who can really blame her?! Next time we might give her a little ativan to take the edge off...
Pet therapy was at the hospital today so Keira got to meet Mel.
And despite her effort to stay awake until the very end, Keira did get a short nap in before it was time to go home.
Happy to be on our way home while there is still sunshine!
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Keira and her dad wore their matching tshirts (K's gift to him for Father's Day this year) and I made chocolate chip cookies.
Normally, we do not let Keira eat cookies for breakfast, but when you are stuck in a hospital room all day, I think the regular rules go out the window. :)
Here's a picture after Keira's 5th cookie of the morning.
The IV took two pokes this month. We tried to tell K that two pokes when you are two is cool, but we weren't able to convince her. :)
It seems like the older she gets the less tolerant of these procedures she is becoming, but who can really blame her?! Next time we might give her a little ativan to take the edge off...
Pet therapy was at the hospital today so Keira got to meet Mel.
And despite her effort to stay awake until the very end, Keira did get a short nap in before it was time to go home.
Happy to be on our way home while there is still sunshine!
Play slideshow - 8 View photos individually
Clinic Visit
Our little girl just continues to amaze us. She made it another 8 weeks between her IVIg infusion. We are happy to report that she is now 82.5cm tall, which might not sound like much, but for a girl who was stuck at 80cm for 6 months, this is big news.
We are still just blown away by the positive effects of an every other day steroid dosage. She is looking tall and thin. Her adorable "cheeks" are really starting to go away and she looks so grown up. Where did our baby go?!
Dr. Effinger is super happy with her progress and shared that we are nearing the end of the Clinical Trial. Next month we will again reduce her prednisone dosage and in September Keira will receive her last scheduled IVIg infusion.
Your first thought is probably - Wow! That is amazing news, however for her two anxious parents we have very mixed emotions. The medication she has been on for the last 10 months has helped suppress those terrible OMS antibodies and gave our little girl back her life. The thought of taking the medicine that made her better away makes us VERY NERVOUS that these antibodies will slowly build up and cause a relapse. :(
On top of that concern, in only a few months it will again be the start of cold/flu season. Catching a minor cold, could trigger her immune system to start up the production of the OMS antibodies and cause a relapse. :( As you can imagine, keeping Keira healthy this next year will be more important than ever.
Thankfully, we have family and friends who are nothing but supportive, a team of doctors that love our little girl and only want the best for her, and a determined 27 month year old who wants to do everything by herself. We truly are blessed and will continue to do everything we can to make sure that Keira stays as healthy and happy as possible.
We are still just blown away by the positive effects of an every other day steroid dosage. She is looking tall and thin. Her adorable "cheeks" are really starting to go away and she looks so grown up. Where did our baby go?!
Dr. Effinger is super happy with her progress and shared that we are nearing the end of the Clinical Trial. Next month we will again reduce her prednisone dosage and in September Keira will receive her last scheduled IVIg infusion.
Your first thought is probably - Wow! That is amazing news, however for her two anxious parents we have very mixed emotions. The medication she has been on for the last 10 months has helped suppress those terrible OMS antibodies and gave our little girl back her life. The thought of taking the medicine that made her better away makes us VERY NERVOUS that these antibodies will slowly build up and cause a relapse. :(
On top of that concern, in only a few months it will again be the start of cold/flu season. Catching a minor cold, could trigger her immune system to start up the production of the OMS antibodies and cause a relapse. :( As you can imagine, keeping Keira healthy this next year will be more important than ever.
Thankfully, we have family and friends who are nothing but supportive, a team of doctors that love our little girl and only want the best for her, and a determined 27 month year old who wants to do everything by herself. We truly are blessed and will continue to do everything we can to make sure that Keira stays as healthy and happy as possible.
Sunday, July 17, 2011
Pat and Mary's House
Pat and Mary have always made their nieces and nephews a priority. We grew up spending special time during the summers at their house and knowing that they would be available for celebrations and visits throughout the year. Now that we are all having kids of our own, they continue the tradition by spending time with our families. Keira's first trip to Menasha was back when she was only 100 days old. She claims she remembers it, but I'm not so sure. :)
Needless to say, it was extra special for both of us to have this one-on-one time with them.
Bugsy Duke is one of Keira's all time favorite dogs. She loves looking at pictures of him in California and talks about him A LOT. We have even Skyped with Bugsy so that K could get her dog-fix. Bugsy must be one of the most tolerant Golden Retrieves I have ever met. Keira would talk to him like he was one of her friends and he would never walk away!
She even let him borrow her favorite yellow blanket for his nap.
Taking Bugsy for a walk "by herself" was on the to do list. It was too cute to see him heel right by her side.
Menasha has a wonderful Children's Museum which was just perfect for our energetic 2 year old.
We were all impressed by the giant tomato slide.
The water room was a hit (and she looked pretty cute in her rain jacket)
And once she worked up the nerve she really liked climbing up and going down the heart slide.
We ended the afternoon taking the firetruck for a spin
and maneuvering the crane
Learning how to play London Bridges was on the evening agenda
We also went to the Special Memories Zoo.
Keira enjoyed the petting zoo
but loved the zoo's playground and riding the tire "horse"
At Bay Beach Keira was able to ride the Carousel
and go on the helicopter ride
I think the highlight of her day was riding a real pony named Pokey
but she still wanted to go on the train
and the Carousel one more time before heading home.
What a busy week!
Play slideshow - 67
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Needless to say, it was extra special for both of us to have this one-on-one time with them.
Bugsy Duke is one of Keira's all time favorite dogs. She loves looking at pictures of him in California and talks about him A LOT. We have even Skyped with Bugsy so that K could get her dog-fix. Bugsy must be one of the most tolerant Golden Retrieves I have ever met. Keira would talk to him like he was one of her friends and he would never walk away!
She even let him borrow her favorite yellow blanket for his nap.
Taking Bugsy for a walk "by herself" was on the to do list. It was too cute to see him heel right by her side.
Menasha has a wonderful Children's Museum which was just perfect for our energetic 2 year old.
We were all impressed by the giant tomato slide.
The water room was a hit (and she looked pretty cute in her rain jacket)
And once she worked up the nerve she really liked climbing up and going down the heart slide.
We ended the afternoon taking the firetruck for a spin
and maneuvering the crane
Learning how to play London Bridges was on the evening agenda
We also went to the Special Memories Zoo.
Keira enjoyed the petting zoo
but loved the zoo's playground and riding the tire "horse"
At Bay Beach Keira was able to ride the Carousel
and go on the helicopter ride
I think the highlight of her day was riding a real pony named Pokey
but she still wanted to go on the train
and the Carousel one more time before heading home.
What a busy week!
Play slideshow - 67 View photos individually
Friday, July 15, 2011
Festival Park
Jess and I took the kids downtown Elgin to Festival Park.
It was a hot day and we knew the kids would have a blast running through the water fountains. They had so much fun it was hard to convince them when it was time to go home!
Keira watching her big cousin, not too sure about it yet.
Keira getting braver, but Colten's not sure he likes all this shooting water.
Aiden and Keira were really enjoying their time now...
This has got to be one of my favorite pictures of Keira, too funny!
Play slideshow - 17
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It was a hot day and we knew the kids would have a blast running through the water fountains. They had so much fun it was hard to convince them when it was time to go home!
Keira watching her big cousin, not too sure about it yet.
Keira getting braver, but Colten's not sure he likes all this shooting water.
Aiden and Keira were really enjoying their time now...
This has got to be one of my favorite pictures of Keira, too funny!
Play slideshow - 17 View photos individually
Playdate with Stella and Mara
Jessica and her girls came over for a visit while we were back in IL.
It was a beautiful day so the girls were able to play in the backyard.
They had a lot of fun watering the flowers,
running around in the grass,
and playing on the neighbor's swingset.
The day went by too quickly but we had lots of fun!
Play slideshow - 11
View photos in flickr
It was a beautiful day so the girls were able to play in the backyard.
They had a lot of fun watering the flowers,
running around in the grass,
and playing on the neighbor's swingset.
The day went by too quickly but we had lots of fun!
Play slideshow - 11
View photos in flickr
Monday, July 11, 2011
Our day with Chuck and Katy!
We were certainly spoiled with so many fun visitors while we were home this summer. Chuck and Katy drove up from Chicago to spend the day in the burbs with us. Keira warmed up to them both very quickly but took a special interest in Mr. Chuck (as she liked to call him).
Keira invited Mr. Chuck to spend some quality time in her "house" with Bingo the horse,
and then she showed him Durango's hiding spot under the table.
After working up an appetite, we decided BW3's was the right place to grab some lunch. Cheers!
Keira tried (and liked) fried pickles.
She was also impressed with Katy's art skills. You wouldn't believe what Katy can do with a blue crayon!
Back at the house, Keira played catch with the boys,
caught some unusual insects,
buried Katy's feet in the sandbox,
and even convinced Naveen to play on the neighbor's swingset.
What a fun day!
Play slideshow - 26
View photos in flickr
Keira invited Mr. Chuck to spend some quality time in her "house" with Bingo the horse,
and then she showed him Durango's hiding spot under the table.
After working up an appetite, we decided BW3's was the right place to grab some lunch. Cheers!
Keira tried (and liked) fried pickles.
She was also impressed with Katy's art skills. You wouldn't believe what Katy can do with a blue crayon!
Back at the house, Keira played catch with the boys,
caught some unusual insects,
buried Katy's feet in the sandbox,
and even convinced Naveen to play on the neighbor's swingset.
What a fun day!
Play slideshow - 26
View photos in flickr
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