This post has been brewing in my head for a few days now. I just needed a few days to sort it out and well celebrate the good news of our soon to be baby girl.
Kiya got cast #4 this past Tuesday. It was a VERY long and draining day. Kiya as always was such a trooper. In my heart, I was hoping for just a little even a smidgen of correction in her curve. That was not to be this time. Her stubborn little curve gained 4 degrees. So we started the day at 66 degrees and once again our doc worked his magic and she is holding at 15 degrees in cast. Amazing. Her flexibility is what keeps me going.
I was devastated by the news that her curve got worse. It was a tough blow. However, not only did I have my wonderful husband, I had some dear friends there to help pick me up. And Linda, our nurse to insist repeatedly that all is fine and that I shouldn't be worried. I am so grateful that Catie, Tracy,Sarah and Rachel were there to pick me up after the news of her curve. I am not sure what I would do without these amazing women that I am so honored to call my friends. Catie has been down this road with her iron man and her hope and his progress is such an inspiration to me. Sarah just gets it and well Rachel is so sweet and dealing with her own cast day stuff and yet there she was to be a support.
So after the shock of that news and a nice breakfast chat with Tracy, it was time to get to Miss Kiya. She is usually pretty grumpy post anesthesia but once again my amazing girl just rolled with it. She was a little out of it and a little mad but once she got her crackers and some juice she was much better. I can't thank Tracy enough. She was right there by our sides encouraging Kiya to eat and drink and getting her more crackers. I just met the woman in person that day and wow. So grateful to her for being there when she didn't have to be and for her care and concern for me and for Kiya. I am lucky to have met her.
Kiya was sporting her new pink cast and was ready to get to the tape. She was even helping the nurses tape her cast. She sat so still and was just amazing. I was so proud of her. All was well until it was time to trim the shoulder straps. From there the day was a blur. Kiya was hysterical. I was a mess and the new latex free tape was TERRIBLE. It just became too much at one point.
I hate scoliosis and I hate this cast. There is extra fiber glass, crappy tape and it is so tight. I will be shocked if we don't have sores under her arms.
I hate that sweet Kiya has to deal with this and yet deal with it is what she does. She is truly amazing. She was up and running around that afternoon. She even went to preschool on Wednesday. She asked to go. She had a great time. She went accident free in her new big girl underwear. We had our first post cast laundry room bath and she was totally fine. She rarely if ever complains. She is such a superstar.
So where do we go from here....we keep on casting. That is what the doc says and that is what we will do. So here is to the next 11 weeks.
Showing posts with label lucky cast. Show all posts
Showing posts with label lucky cast. Show all posts
Saturday, July 23, 2011
Tuesday, February 1, 2011
Back to the beginning
So yesterday, Kiya got cast #2. She did great as always. Such a trooper. It was a VERY long day that took WAY too long to do everything. At one point I was tempted to just grab the tape and padding and just finish the job myself but whatever. All in all I love the staff at Shriner's Chicago minus maybe the clueless anesthesiologist and the new nurse who was I believe the source of the slow down.
Miss Kiya is now sporting a brand new very pink cast. She picked the color herself. I knew she would pick pink. She only recognizes a few colors accurately pink being one of them and her latest love so I knew as soon as she saw it that is what she would pick. My girly girl didn't let me down.
She is adjusting well. A little sore and a little clumsy but overall doing great. She is walking pretty well. She is starting to bend and pick things up again. She will only sit for short periods of time without a wall or pillow behind her but she did that last time too so that is to be expected. The thing that shocked me is last night she slept on her side on and off. That took a month plus in her last cast.
The best part of the day was being there with 2 of our Lucky Cast families. That makes the long casting day just a little easier when you can share it with your extended family. There were definitely some people we missed and wished could have been there but we know they were there with us in spirit and cheering us on through facebook.
I was kind of prepared for Kiya's xray numbers and kind of not. When she started this journey back in September she was at a 52 degree curve in her spine which the doctor was able to hold at 15 degrees in her cast. Well yesterday Kiya's out of cast xray came back showing a 60 + degree curve so worse than before. Two things happened here. One the xray wasn't perfect, Kiya's shoulders weren't squared up and the second is that Kiya was out of cast for just over 2 months. The doctor worked his magic again and was able to hold Kiya's curve to 15 degrees in cast again. So I am holding on to that. Kiya is pretty flexible which should help. He is still hopeful that we can get complete correction if we stay the course so we are in this for the long haul.
I feel like we are starting all over and are in cast #1 really. Not going to let it get me down though. We have amazing friends to walk with us on this journey and pick us up when we fall or need the extra encouragement and that makes the world of difference. I cried 1 time yesterday and that was when they rolled Kiya back to surgery. Last cast, I couldn't stop crying and had to hold on to nurse Gwen for support and a walk before I could even get near Kiya post surgery. Why was it different this time even with the unsettling starting number? Well, we knew what to expect with the angry screaming toddler post anesthesia. We knew what she would look like with the cast on so there wasn't the shock factor. We knew that our friends were right there with us and that we can do this together.
We are all readjusting to our new normal and breathing a sigh of relief. We have 12 weeks to not worry about Kiya's back getting worse. It is a nice feeling. These last 2 months of looking to see if her back was crooked. Watching it get crooked was tough.
For all the numbers, check Kiya's Kare Korner.
Miss Kiya is now sporting a brand new very pink cast. She picked the color herself. I knew she would pick pink. She only recognizes a few colors accurately pink being one of them and her latest love so I knew as soon as she saw it that is what she would pick. My girly girl didn't let me down.
She is adjusting well. A little sore and a little clumsy but overall doing great. She is walking pretty well. She is starting to bend and pick things up again. She will only sit for short periods of time without a wall or pillow behind her but she did that last time too so that is to be expected. The thing that shocked me is last night she slept on her side on and off. That took a month plus in her last cast.
The best part of the day was being there with 2 of our Lucky Cast families. That makes the long casting day just a little easier when you can share it with your extended family. There were definitely some people we missed and wished could have been there but we know they were there with us in spirit and cheering us on through facebook.
I was kind of prepared for Kiya's xray numbers and kind of not. When she started this journey back in September she was at a 52 degree curve in her spine which the doctor was able to hold at 15 degrees in her cast. Well yesterday Kiya's out of cast xray came back showing a 60 + degree curve so worse than before. Two things happened here. One the xray wasn't perfect, Kiya's shoulders weren't squared up and the second is that Kiya was out of cast for just over 2 months. The doctor worked his magic again and was able to hold Kiya's curve to 15 degrees in cast again. So I am holding on to that. Kiya is pretty flexible which should help. He is still hopeful that we can get complete correction if we stay the course so we are in this for the long haul.
I feel like we are starting all over and are in cast #1 really. Not going to let it get me down though. We have amazing friends to walk with us on this journey and pick us up when we fall or need the extra encouragement and that makes the world of difference. I cried 1 time yesterday and that was when they rolled Kiya back to surgery. Last cast, I couldn't stop crying and had to hold on to nurse Gwen for support and a walk before I could even get near Kiya post surgery. Why was it different this time even with the unsettling starting number? Well, we knew what to expect with the angry screaming toddler post anesthesia. We knew what she would look like with the cast on so there wasn't the shock factor. We knew that our friends were right there with us and that we can do this together.
We are all readjusting to our new normal and breathing a sigh of relief. We have 12 weeks to not worry about Kiya's back getting worse. It is a nice feeling. These last 2 months of looking to see if her back was crooked. Watching it get crooked was tough.
For all the numbers, check Kiya's Kare Korner.
Friday, November 12, 2010
Thursday, October 21, 2010
Pajama Drive
So I know I mentioned this briefly before and some of you are my friends on facebook so you have seen it and some of you have sent me pajamas already... thanks Stefani.
But here is the official info.
The Lucky Cast Club is holding a Pajama Drive. Check out some cutie pies in their casts here.
The Lucky Cast Club will be collecting New Pajama's to send home with our little cast friends this fall/winter. Casting is uncomfortable for many of our little friends so we thought it would be fun to add a little soft sunshine to their casting day's. You can help us reach our first PJ drive goal by donating a new pair of fun PJ's size 12/18 months to 5t. Lucky Cast Club members will be collecting PJ's until our next cast dates.
Ours is December 14th, but we can ship donations that arrive after that date! Thanks for your support. Here we grow Lucky Cast Friends! The plan is to collect over 150 pair of pjs and then divide then between our hospital in Chicago and then also to Cincinnati Children's Hospital and Salt Lake City Shriner's hospital and others as well.
We are well on our way. My nutty idea was to collect 52 pairs of jammies, one for each degree of Kiya's curve. Why? So that each one of those degrees will represent a smile on another child's face.
So if you are so inclined to want to help, leave me a comment with an email. Thanks for all of the support you have shown to us during this journey.
But here is the official info.
The Lucky Cast Club is holding a Pajama Drive. Check out some cutie pies in their casts here.
The Lucky Cast Club will be collecting New Pajama's to send home with our little cast friends this fall/winter. Casting is uncomfortable for many of our little friends so we thought it would be fun to add a little soft sunshine to their casting day's. You can help us reach our first PJ drive goal by donating a new pair of fun PJ's size 12/18 months to 5t. Lucky Cast Club members will be collecting PJ's until our next cast dates.
Ours is December 14th, but we can ship donations that arrive after that date! Thanks for your support. Here we grow Lucky Cast Friends! The plan is to collect over 150 pair of pjs and then divide then between our hospital in Chicago and then also to Cincinnati Children's Hospital and Salt Lake City Shriner's hospital and others as well.
We are well on our way. My nutty idea was to collect 52 pairs of jammies, one for each degree of Kiya's curve. Why? So that each one of those degrees will represent a smile on another child's face.
So if you are so inclined to want to help, leave me a comment with an email. Thanks for all of the support you have shown to us during this journey.
Monday, October 4, 2010
What am I up to?
Too much really. Stretched a little thin but loving it.
Kiya is keeping me on my toes for sure. She is trying to be sneaky but given that she is set to loud all the time that hasn't really worked. Add to that that she is just too darn cute and let's just say the next couple of years are going to be interesting. We are headed to Chicago for a follow up appointment at Shriner's. She is approaching one month in cast and they like to check on the kids after the first month in their first cast. Her appointment is Monday Oct. 11th. I am super excited because some other amazing mom's will be at Shriner's that day and I can't wait to meet them in person.
We also got Kiya's 2nd cast date. It will be December 14th. We can cut her cast off up to two weeks prior to that which would be very close to her 2nd birthday. We are opting for about one week/8 days prior as it makes me nervous to take it off. I don't have to worry right now about her back getting worse. No cast means her back could get worse.
The rest of life is also keeping my busy. I now occasionally blog at
http://www.luckycastclub.blogspot.com/
Okay, I have only posted once so far but I am a new author. It is a joint blog with multiple authors who are moms with kids with infantile scoliosis.
You can also check out this cool website, set up by a friend I hope to meet on the 11th.
http://www.luckycastclub.com/
Basically both ventures are there to empower and reach out to families dealing with scoliosis. Our ultimate goal is to set up a non-profit organization to raise funds and gather supplies for families and kids dealing with this condition. We are starting small and dreaming big.
First up, a Pajama Drive. More details will follow but ultimately, we are trying to collect comfy pajamas size 12 month to 5t to distribute to kids on their cast day. We got Dora pajamas for Kiya from a dear friend and it was really neat. We want all kids to have that.
If that isn't enough, I may be joining forces with an old friend from grade school who now works for Project C.U.R.E to see if we can get some more medical supplies headed to hospitals in Ethiopia.
Add to that that I still work full time, am a full time Mom and have two crazy pugs who don't get nearly enough attention and my plate is FULL. I wouldn't change a thing though. Busy is good. Keeps me out of trouble.
Kiya is keeping me on my toes for sure. She is trying to be sneaky but given that she is set to loud all the time that hasn't really worked. Add to that that she is just too darn cute and let's just say the next couple of years are going to be interesting. We are headed to Chicago for a follow up appointment at Shriner's. She is approaching one month in cast and they like to check on the kids after the first month in their first cast. Her appointment is Monday Oct. 11th. I am super excited because some other amazing mom's will be at Shriner's that day and I can't wait to meet them in person.
We also got Kiya's 2nd cast date. It will be December 14th. We can cut her cast off up to two weeks prior to that which would be very close to her 2nd birthday. We are opting for about one week/8 days prior as it makes me nervous to take it off. I don't have to worry right now about her back getting worse. No cast means her back could get worse.
The rest of life is also keeping my busy. I now occasionally blog at
http://www.luckycastclub.blogspot.com/
Okay, I have only posted once so far but I am a new author. It is a joint blog with multiple authors who are moms with kids with infantile scoliosis.
You can also check out this cool website, set up by a friend I hope to meet on the 11th.
http://www.luckycastclub.com/
Basically both ventures are there to empower and reach out to families dealing with scoliosis. Our ultimate goal is to set up a non-profit organization to raise funds and gather supplies for families and kids dealing with this condition. We are starting small and dreaming big.
First up, a Pajama Drive. More details will follow but ultimately, we are trying to collect comfy pajamas size 12 month to 5t to distribute to kids on their cast day. We got Dora pajamas for Kiya from a dear friend and it was really neat. We want all kids to have that.
If that isn't enough, I may be joining forces with an old friend from grade school who now works for Project C.U.R.E to see if we can get some more medical supplies headed to hospitals in Ethiopia.
Add to that that I still work full time, am a full time Mom and have two crazy pugs who don't get nearly enough attention and my plate is FULL. I wouldn't change a thing though. Busy is good. Keeps me out of trouble.
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