Kinley's Second Haircut

I want Kinley's hair to grow out, but she was getting quite the baby mullet, so back in March we took her for her second haircut. This haircut was just to trim up the back a little to make her hairstyle less of a mullet and more like a bob.

Here are a couple of "before" pics.



And here we are just outside the hair salon. (I think Kinley figured out where we were going.)


We went to the same salon we took Kinley to for her first haircut, but this time she picked to sit in the pink car. It worked out well for her because they were playing Dora The Explorer at that station. They did a good job trimming Kinley's hair and once she got over her initial shock she seemed to calm down a bit.





This was the best "after" pic that we could get of Kinley before she darted out of the salon. Off she goes!

Happy Valentine's Day

Yes, I realize it is May and I am just now posting on Valentine's Day from February. Better late than never, right?

I made Kinley a special Valentine's Day breakfast. She had heart-shaped eggs in a frame with freeze-dried strawberries. Delicious!





She also wore her Valentine's Day outfit compliments of Aunt Mary.



And we can't forget the traditional Valentine's Day gift of a swimsuit.


I guess Kinley thought she could play in Kobi's water dish since she had a swimsuit on. Not cool Kinley, that is Kobi's.

Happy late Valentine's Day everyone!

Movie Night

As I was trying to upload pictures from the blood drive I came across some older pics that I thought I had uploaded and posted already. Apparently I was further behind on Kinley's blog than I originally thought. Sorry.

These pics are from waaaay back in January when Kinley had a movie night with her friend Chase. They ate pizza and watched "Up". It was a fun night and Kinley sat for more of the movie than I thought she would. She also loved exploring the room, but that is Kinley for you. She is on the move 99% of the time, but we love her!

Keeping An Eye On Hearing

On March 19th Kinley had another hearing test. Kinley is followed by an Audiologist at Children's Mercy for a couple of reasons. The first reason is that she is delayed in her speech, and the second reason is because of all the risk factors for hearing loss that go along with CDH and the treatments for it.

The first couple of times Kinley had her hearing tested the results were borderline, but within normal limits. This time Kinley showed some mild, low-frequency hearing loss. The good news is that structurally everything looks good with her ears and the Audiologist does not think that hearing, or even some mild hearing loss should be affecting Kinley's speech.

Kinley will need another follow-up appointment in 1 to 3 months to re-evaluate her hearing. In the meantime Kevin and I are supposed to work with Kinley and get her used to using either headphones or ear buds so that at her next appointment they can try to test each ear individually. Up until this point Kinley's hearing tests have been done in a sound proof room and they are only able to test overall hearing. The hope is that at the next appointment Kinley will be able to tolerate a hearing test with either the headphones or ear buds and that way they can test each ear individually for more accurate results.

Kevin and I have our work cut out for us as Kinley does not usually tolerate anything being put on her head. I am still working on getting her to keep bows in her hair or sunglasses on her face. As soon as I put anything on she just takes it right off. Wish us luck with this challenge.

No Surgery For Kinley This Year!

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.

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!

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!