Back on March 9th, Kinley had a check up with Dr. S, the surgeon who did her repair surgery. Kevin and I were expecting to hear that Dr. S would like to go in sometime this year and fix the hernia that was created during her repair surgery since Kinley has not had any major complications with her initial repair and has been fairly healthy.
Let me backtrack for just a moment to get everyone on the same page. When Kinley had her CDH repair surgery there was not enough room in her abdomen to accommodate her stomach and intestines since they had been growing in her chest cavity. Dr. S was able to bring her stomach and intestines down to her abdomen, but was not able to close all the layers of skin, just the top couple of layers. Hence a hernia was created during her CDH repair surgery. We were told that in time her abdomen would expand and sometime in the future she would need another surgery to close the innermost layers of skin in her abdomen.
We were surprised to hear that Dr. S was not in any hurry to correct that minor hernia. He said that since she is doing well and does not seem to be bothered by the hernia that we could wait until she was bigger and stronger before doing another surgery. He said that we could wait up until she was 7 years old as long as it does not seem to bother her. Seven years is the magic number since that is approximately how long lungs continue to develop. Kinley had a chest x-ray just to make sure everything was where it should be and then we were on our way. It was a short and sweet appointment and she does not have another appointment for a year.
Thursday, May 6, 2010
Wednesday, May 5, 2010
Finally...Blood Drive Pics!
Well, it has been a while since we updated the blog and we have been getting a lot of requests for an update. Sorry to those of you who are out of town and have not been able to see any recent pics of Kinley, but we have actually been pretty busy around here with more details on that to follow. In the meantime, here are some pics from the blood drive for you to enjoy.
Kinley trying really hard not to smile
Kinley with her Baa Baa & Elie and Sofie with her Hoo Hoo
Kinley sharing her crackers as Sofie feeds Hoo Hoo
Sofie had a great time pushing Kinley around in her stroller
And here are some of our wonderful donors!! Notice all the turquoise!
Aunt Kate
Grandpa Seep multi-tasking a conference call while donating
Grandpa Melcher getting ready to donate
And of course...Daddy!
We had a great time at the blood drive and were able to collect 33 units of blood. Thanks to all our family and friends who came out to donate. We really appreciate your support and you really are life savers!
Kinley trying really hard not to smile
Kinley with her Baa Baa & Elie and Sofie with her Hoo Hoo
Kinley sharing her crackers as Sofie feeds Hoo Hoo
Sofie had a great time pushing Kinley around in her stroller
And here are some of our wonderful donors!! Notice all the turquoise!
Aunt Kate
Grandpa Seep multi-tasking a conference call while donating
Grandpa Melcher getting ready to donate
And of course...Daddy!
We had a great time at the blood drive and were able to collect 33 units of blood. Thanks to all our family and friends who came out to donate. We really appreciate your support and you really are life savers!
Tuesday, March 30, 2010
Last Minute CDH Blood Drive Reminder
Tomorrow, March 31st, is very important for two reasons. The first is that it is CDH Awareness Day. The second is that it is the day of our annual CDH blood drive.
If you have not signed up for a spot yet please follow the directions below. Anyone who comes to donate will receive a goody bag. Walk-ins are more than welcome. So please pass the notice of tomorrow's blood drive to anyone you feel would like to participate.
It is easy to sign up, just follow these steps:
1. Log on to www.savealifenow.org If you haven't registered already, you will
need to register before you can sign up.
2. Select "Schedule an Appointment"
3. Find the drive by entering sponsor code "sofia".
4. Click on our drive, which is listed as "Rees Masilionis Turley Architecture
1st Floor Lobby"
5. Click the "schedule" link to the right of the time slot you want to sign up
for. You will receive a confirmation once the appointment is scheduled.
If you aren't able or don't wish to sign up online, Jen (Sofia's Mom) can sign you up. Just email her at jen@sofiascdhstory.com with the following information:
1. Your first and last name
2. Your zip code
3. Your email address or phone number.
4. The time slot you prefer (1st and 2nd choices).
We have three time slots available every 15 minutes from 10:00-2:45. So we should be able to accommodate everyone pretty easily.
We look forward to seeing everyone tomorrow! Remember, March 31st is also CDH Awareness Day, so be sure to wear turquoise all day!
If you have not signed up for a spot yet please follow the directions below. Anyone who comes to donate will receive a goody bag. Walk-ins are more than welcome. So please pass the notice of tomorrow's blood drive to anyone you feel would like to participate.
It is easy to sign up, just follow these steps:
1. Log on to www.savealifenow.org If you haven't registered already, you will
need to register before you can sign up.
2. Select "Schedule an Appointment"
3. Find the drive by entering sponsor code "sofia".
4. Click on our drive, which is listed as "Rees Masilionis Turley Architecture
1st Floor Lobby"
5. Click the "schedule" link to the right of the time slot you want to sign up
for. You will receive a confirmation once the appointment is scheduled.
If you aren't able or don't wish to sign up online, Jen (Sofia's Mom) can sign you up. Just email her at jen@sofiascdhstory.com with the following information:
1. Your first and last name
2. Your zip code
3. Your email address or phone number.
4. The time slot you prefer (1st and 2nd choices).
We have three time slots available every 15 minutes from 10:00-2:45. So we should be able to accommodate everyone pretty easily.
We look forward to seeing everyone tomorrow! Remember, March 31st is also CDH Awareness Day, so be sure to wear turquoise all day!
Sunday, February 28, 2010
Team Sofie and Team MJ
We are thrilled to be teaming up with Team Sofie again for this year's CDH Awareness Blood Drive. Check out everything that Sofie has been up to at www.sofiascdhstory.com.
Last year was such a success that we had to raise the bar for this year. If you remember, the goal last year was to get 30 people to donate blood and we ended up getting 41 donors! This year we raised the goal to 50 donors and I am confident that we can meet that goal. One reason I am so confident is that we added another CDH family to host with us this year. MJ's family will be taking part in this year's blood drive.
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MJ fought very hard to beat CDH, but after 35 days he earned his wings. MJ's twin brother Will is a healthy little boy and we can't wait to meet him. Learn more about MJ and everything his parent's are doing to honor his memory at www.mjsmemories.blogspot.com.
Please help us spread awareness for CDH and donate blood by attending the 3rd Annual CDH Awareness Blood Drive. Kinley, Sofie and MJ required many blood transfusions while at Children's Mercy Hospital, especially while on ECMO. Even if your blood does not directly go to a baby with CDH it will still be helping someone in need.
Last year was such a success that we had to raise the bar for this year. If you remember, the goal last year was to get 30 people to donate blood and we ended up getting 41 donors! This year we raised the goal to 50 donors and I am confident that we can meet that goal. One reason I am so confident is that we added another CDH family to host with us this year. MJ's family will be taking part in this year's blood drive.
.jpg)
MJ fought very hard to beat CDH, but after 35 days he earned his wings. MJ's twin brother Will is a healthy little boy and we can't wait to meet him. Learn more about MJ and everything his parent's are doing to honor his memory at www.mjsmemories.blogspot.com.
Please help us spread awareness for CDH and donate blood by attending the 3rd Annual CDH Awareness Blood Drive. Kinley, Sofie and MJ required many blood transfusions while at Children's Mercy Hospital, especially while on ECMO. Even if your blood does not directly go to a baby with CDH it will still be helping someone in need.
Friday, February 26, 2010
3rd Annual CDH Awareness Blood Drive
It is easy to sign up, just follow these steps:
1. Log on to www.savealifenow.org If you haven't registered already, you will
need to register before you can sign up.
2. Select "Schedule an Appointment"
3. Find the drive by entering sponsor code "sofia".
4. Click on our drive, which is listed as "Rees Masilionis Turley Architecture
1st Floor Lobby"
5. Click the "schedule" link to the right of the time slot you want to sign up
for. You will receive a confirmation once the appointment is scheduled.
If you aren't able or don't wish to sign up online, Jen (Sofia's Mom) can sign you up. Just email her at jen@sofiascdhstory.com with the following information:
1. Your first and last name
2. Your zip code
3. Your email address or phone number.
4. The time slot you prefer (1st and 2nd choices).
We have three time slots available every 15 minutes from 10:00-2:45. So we should be able to accommodate everyone pretty easily.
We look forward to seeing everyone March 31st! March 31st is also CDH Awareness Day, so be sure to wear turquoise all day!
Wednesday, February 10, 2010
Mark your calenders and get ready to donate!
That's right, it is time again for the 3rd Annual CDH Awareness Blood Drive! We are teaming up with Sofie's family again and are excited to be adding a third family, MJ's family into the mix this year. This year's blood drive will be held on March 31st from 10 AM until 2 PM. The location will be the same as last year...908 Broadway, Kansas City, MO. More details to come as they become available. Thanks in advance to everyone for your support!
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