Kinley With Her Letters

Our letters are ready to go! Here is Kinley with the letters just before we drove to the post office to mail them.

Time to email Oprah.

Are Your Letters Ready?

Mine are not, but I am working on them and they will be ready to mail/email tomorrow.

This is just a reminder that tomorrow, July 15th is the date to mail your letters to Ellen and email Oprah for the Letters for CDH project. The website again is www.lettersforcdh.blogspot.com.

Thanks in advance for all who plan to help spread awareness for CDH!! I think Carter's Mom had a great idea with this project.

The Lucky Photographer

A while back we took Kinley to Ernie Miller Nature Center and met The Lucky Photographer there for Kinley's 1 year photo shoot. It was the first time Kinley had any professional pictures taken of her. Kinley did pretty well, but was not in a smiling mood. I was really impressed that The Lucky Photographer got any smiles out of Kinley. I added some of my favorite pics to the right side of the blog so that they will have a permanent spot. Hope you enjoy!

Summer Fun

When we first came home from the hospital it felt like all we did was prepare to feed Kinley, feed Kinley, then clean up from feeding which usually also meant cleaning up throw-up and replacing an NG tube. That was our life for a few months. Then it was cold and flu season and we were told to keep Kinley away from other kids and crowds to try and prevent her from getting sick. Now the weather is nice and Kinley is only eating four times a day at regular intervals. It is so nice to finally be able to take Kinley out and about and have her play with other kids!! In fact, we are actually being encouraged to get her out and experience new things in hopes that it might stimulate her to talk more. What a total 180. So, here are some of the fun things we have been up to lately.

We took Kinley to Barnes and Noble to play with other kids back in the children's section, but unfortunately we must have gone at the wrong time because Kinley was the only kid there. Oh well, she did get a couple of new books out of the deal.

Last Friday we went to the Lenexa BBQ and Kinley had a great time playing with her friend Chase even though the weather was a little warm when we got there. Chase had a nice blanket laid out on the grass for him and Kinley to play on (with a fan blowing their direction and everything), but Kinley had other plans. She was crawling all over the place and for some reason she didn't seem to mind crawling on grass or dirt like she normally does. She was a handful, but she was having such a good time it was fun to just watch her play.

On Monday night Kinley went to her second Royal's baseball game to see them play the Minnesota Twins. This time we went with Grandma and Grandpa Seep and Aunt Mary. Kinley got to ride the merry-go-round before the game and had a fun time cheering on the Royals from her seat. Well, at least I think she was cheering for the Royals. She had on a blue shirt for the Royals, but wore her hat from Outing, Minnesota. I think she was trying to be diplomatic since she has a lot of relatives up in Minnesota that were probably watching the game. And yes, I did say Kinley was cheering earlier. Every once in a while she would just let out a little yell. It was pretty cute and we are happy with any noise from Kinley at this point.

Kinley on her merry-go-round ride

Kinley cheering on the Royals (or Twins)

Wednesday was date night for Kevin and I, so Kinley got to play with Grandma Melcher. She always enjoys her time with Grandma.

Thursday Kinley had a play date at the pool with a couple friends. Kinley still enjoys the pool, but I think she had the most fun crawling around the pool. Ouch! The concrete didn't seem to bother her though. I am starting to think her high tolerance for pain might be getting her in trouble soon.

Friday night Kinley attended her friend Chase's First Birthday Party. Chase and Kinley played together for a little bit, but Chase was busy entertaining and Kinley was busy exploring, so I was not able to get any pics of the two together. It was a fun night out though and Chase got a lot of really cool toys!

Saturday we had some friends over who were in town from Texas. Kinley awoke from her nap to find 2 new people in the house. Kinley has been doing pretty well being around new people and was showing off by walking all around the house (with a little help). When Kinley awoke from her second nap of the day our friends had left and Grandma and Grandpa Seep had arrived. We hung around the house and Kinley played with Grandma and Grandpa. After that Kevin and I took her to the arboretum for some fresh air and exercise. It was beautiful and not too hot out by the time we went. Unfortunately for Kinley she was pooped and fell asleep before fireworks started, so she missed out this year. Maybe next year.

Sunday evening we had a family get together at Kevin's Aunt's house. It was really nice to be together as a family and we got to see some relatives that we haven't seen for a while. Kevin's Aunt also has goats and there were a couple baby goats born 2 days ago. Kinley has become quite fearless lately trying to get into everything...

Here she is trying to pet the baby goat.

As you can see, we have been doing our part to stay active and expose Kinley to new things as much as possible. I think she is having a great time! (It has to be better than just hanging out with mommy and daddy at home like we used to do.)

Letters for CDH

I just realized that I haven't posted on a very good CDH project started by Carter's mom, Kellie. I guess I just figured that most people reading Kinley's blog also read Sofie's blog, and Jen is just so good at staying up to date on Sofie's blog. (I really don't know how she does it.)

The project is called Letters For CDH. The purpose of the project is to bring the CDH community together to raise public awareness and interest for CDH. As it stands now, even with the best that medicine has to offer, half of all babies with CDH will die. This has to change!! The basic idea of this project is to get as many people possible to send as many blue envelopes as they can to The Ellen DeGeneres Show on July 15, 2009. The only requirements are that the envelopes be blue, have a fact about CDH on the back and be mailed on July 15th. If you wish to include a letter you may, but don't feel obligated. On that same day send emails to Oprah since she does not accept postal mail. The hope is to get the attention of Ellen or Oprah (or both) since they have the resources to put CDH in the spotlight. The more people are aware that CDH exists, the more funds can be raised for research and that will lead to progress. Please join our fight against CDH!!

The website for the project is: http://lettersforcdh.blogspot.com. You can find all the info you will need to participate there including CDH information, a list of facts you can choose to put on the back of your envelopes, address for Ellen, email for Oprah, where to get blue envelopes, a form letter if you choose to include a letter and much more. Thanks in advance for your support and help!

Great Pool Weather

OK, so the weather was not great yesterday, but that just meant the pool was not very crowded. It was warm enough, but we were trying to beat the rain and we didn't. It was sprinkling while we swam, but we didn't plan on staying long, so it was not a big deal. We just wanted to introduce Kinley to the pool since she has such a fun time with her baths.

This is Kinley on her way to the pool for the very first time. Notice how super excited she is.

Kinley enjoying having the whole kiddie pool to herself.

After her warm up in the kiddie pool Kinley was ready to take on the big pool, with Daddy's help of course. Kinley loved to splash around and got Daddy in the face several times, I am pretty sure she was in mid splash during this picture based on Kevin's expression.

Hearing Test

This afternoon we took Kinley to Children's Mercy South for her appointment with the audiologist. Kinley's pediatrician, OT and nurse practitioner from the special care clinic all agreed that a hearing test was a good idea just to rule out any hearing problems as the cause of her delayed speech.

Kinley is at an increased risk for developing late onset/progressive hearing loss as a result of her rough start in life. This means that even though Kinley passed her newborn hearing screen, we still need to have her hearing monitored up until she is about 10 years old. I have a good friend who is an audiologist and she sent me a few studies on CDH and hearing loss. From what I learned it is not necessarily the CDH that causes hearing loss, rather the side effects from some of the treatments Kinley required. ECMO and certain antibiotics were the two main culprits for causing hearing loss, and the longer duration of treatment increased the risk. Kinley had her 21 day run on ECMO which certainly increased her risk for hearing loss. As far as the antibiotics go, Kinley was on vancomycin and gentamicin. Both of those antibiotics can cause hearing loss even with the close monitoring that she received while on those medications. There was even one study that listed mechanical ventilation, especially with the high frequency oscillator as a risk factor for developing hearing loss. Also listed as possible risk factors in that study were the use of inhaled nitric oxide, loop diuretics such as Lasix and hypoxia, or decreased oxygen levels. Based on the studies that I read it looks like anywhere from 5 to 25 percent of ECMO graduates may show signs of late onset/progressive hearing loss, so the percentage is fairly small, but worth monitoring.

Kinley's appointment started off with the audiologist looking into Kinley's ear. According to her, everything looked normal. Then she used an instrument in Kinley's ear to try and get Kinley's eardrums to move. Kinley's eardrums moved, so that was also good. Next up was the behavioral hearing test. The audiologist left the testing room and Kinley, Kevin and I were left inside. From behind the 1 way glass in the room next door, the audiologist made sounds appear from various speakers around the testing room and watched Kinley's response to the noises. After that test was finished she came back into the room and discussed the results with us. She said that Kinley's hearing was borderline, but within normal limits at this time. She said that Kinley's hearing should not be affecting Kinley's speech and language skills at this point. However, this test just tested Kinley's overall hearing, not each ear individually. So, the audiologist tried one last test on Kinley. This test involved putting a little device on one of Kinley's ears and was supposed to test the hearing of each ear individually. The problem was that Kinley had to be quiet for the test and she started to cry a little when the device was placed on her ear. We were not able to get accurate results from that test.

The audiologist recommended that we come back in 3 months to follow-up and go from there.