Kinley Seep Melcher

Moving to Family Blog

2010-10-25T21:07:00.000-07:00

This is sad to say, but this will be the last post to Kinley's blog.

Kinley's story is far from over, but due to the upcoming addition of our second child we thought it would be best if we started a family blog. Don't worry though, we will keep this blog active and continue to blog about Kinley on our family blog. Our family blog is www.themelcherfamily.blogspot.com. We are still working on getting the web page set up, but posts will start going up very soon. (SPOILER ALERT: Kinley's baby brother was born October 7th. Yes, we are already behind on posting about it.)

We would like to thank everyone who has followed and shared in Kinley's life to this point. Please feel free to follow her on our family blog. Her story has been an absolutely amazing one so far and we know that it will continue along that same path.

Bounce House

2010-10-24T22:47:00.000-07:00

FYI - This is going to be a picture heavy post.

To help Kinley with the upcoming transition of adding our second child to the family, we bought her an early Christmas gift. It is a bounce house. The plan is that the bounce house will give her something to do while we are overwhelmed taking care of her little brother. We got the idea from our close friends who bought their 2 year old a bounce house for his birthday. It is an indoor/outdoor bounce house, but our main intention is to use it indoors since it will be winter soon. The bounce house is made by "little tikes" and we ended up ordering it online since not too many retailers carry them in stock. I believe we bought it through babyage.com because it had free delivery and we found an online coupon for 10% off. Little Tikes has many different styles of bounce houses. We ended up going with a triangle bounce house that has a slide on one side. We felt it was the best option to fit in our house. Below are a bunch of pictures from the first day Kinley was able to play in it.

Please let me play!

Your Baby Can Read

2010-10-24T08:35:00.000-07:00

To help with Kinley's speech development we have purchased the Your Baby Can Read box set from Bed, Bath & Beyond. One of our main motivations for purchasing and trying Your Baby Can Read is that one of the boys in Kinley's playgroup is using it and he has a very extensive vocabulary. Our second reason is that we are willing to try anything to help Kinley increase her vocabulary and hopefully catch up in her speech development. Buying the entire set from the Your Baby Can Read website was too expensive for us, but we were comfortable purchasing the smaller set using one, of our many, 20% off coupons to Bed, Bath & Beyond. Our set came with 4 DVDs, 4 word flap books and 4 sets of flash cards.

Kinley enjoys all 3 parts (DVDs, books and flash cards) of her box set. The DVDs are pretty short and not very fancy, but they work really well in the car. Her pronunciation still needs a lot of work, but she makes attempts to say most every word. She especially likes the songs on the DVDs. She attempts to do the hand motions to "Itsy Bitsy Spider." She touches her head during "Head, Shoulder, Knees and Toes". She might do more body parts, but the song simply goes too fast for her to keep up. And she claps, stomps and yells hooray to "If You're Happy And You Know It." She likes the books also, but the flaps go all different directions depending on the page and sometimes Kinley gets frustrated. The flash cards are especially nice because they have inserts that slide out to reveal a picture of the word on the card. Kinley has fun sliding the cards.

Overall we are very happy with our purchase of Your Baby Can Read. Kinley still has a long way to go with pronunciation and verbal communication, but it has gotten her vocalizing more and has also greatly increased her vocabulary. Now when we read books to Kinley she loves to point to, and say all of the objects she knows.

Lake House

2010-10-20T19:45:00.000-07:00

While we were vacationing at Tan-Tar-A earlier this year, Grandma and Grandpa Seep were doing some searching for a lake house. Luckily, for everyone, they found one that met all their requirements and they were able to close on it. Now, thanks completely to Grandma and Grandpa Seep, Kinley and her soon to be younger brother will have a fun vacation home that is not too far away. I guess mom and dad will simply have to suck it up and tag along. I'm completely kidding. I think we might be more excited about the lake house than Grandma and Grandpa.

After the closing was finalized we all (Kathy, Kevin, Kinley, Grandpa and Grandma Seep) took a family trip to Nebraska Furniture Mart. There Kinley helped us pick out beds and couches for the lake house.

We have been down to the lake house a couple of times with Kinley, but unfortunately we have not taken any pictures. Below is a pic that Grandpa Seep took of Grandma Seep, with the lake house in the background.

Kinley really enjoys the water and she loves it when we go swimming off the dock. We do not have a boat yet, but Grandma and Grandpa Seep hope to have one by next summer. We also have plans to help out by getting a wave runner for the house, but need to do some researching and money saving first. Especially with baby #2 coming.

2 Year Update

2010-10-19T10:36:00.000-07:00

OK, well I guess Kinley has been two for awhile now, but I have been meaning to post a two year update since she turned two, so that is what we are going with.

Kinley is still sleeping very well. Her bedtime is typically between 8-8:30 PM and she usually sleeps until at least 7 or 8 AM the next morning. She also takes an afternoon nap which usually starts around 1 PM and lasts until 4 PM. She doesn't always sleep the entire naptime, but she is content to rest in her crib.

We don't really worry about Kinley's eating patterns anymore, which is great considering how focused we were on her nutrition status and weight at first. Kinley has really come a long way from the feeding tube, supplements and thickener that she used to require. Now Kinley eats breakfast when she wakes up, lunch around noon, a cup of milk as a snack when she wakes up from her nap, and dinner around 7 PM. Breakfast is usually french toast sticks or cereal with some type of fruit, usually a banana. Kinley will also get a cup of 2% milk with a 1/4 capful of Miralax mixed in. All of Kinley's cups are now cups with straws. She has outgrown the traditional sippy cup. Lunch and dinner varies from day to day, but Kinley's favorite foods recently are mac and cheese, grilled cheese, Dora yogurt, muffins, crackers and cheese, chicken nuggets, pizza and almost any type of fruit. Kinley is not big into vegetables or meat other than chicken nuggets, but we are working on it. Kinley gets water in her cup with lunch and dinner. I am sure Kinley would prefer milk, but we were told Kinley was getting too much milk, plus her appetite seems to be better for lunch and dinner when we give her water to drink. We have tried letting Kinley have some juice as a little treat, but she doesn't really like it. Kinley has recently learned to use a fork and spoon and actually prefers using utensils to her hands to eat since her hands get less messy that way.

When Kinley turned 2 years old we started giving her a chewy multi-vitamin to help with her nutrition. She is not on any meds, but we do give her a 1/4 capful of Miralax a day.

As of Kinley's last check up on 6/2/10, her weight was 25 lbs (30th percentile). Her height was 34.5 inches (75th percentile). And her head circumference was 19.5 inches (95th percentile). She does not need to go back for a check up until her 3rd birthday. As of Kinley's 2nd birthday, she was wearing size 18 month clothes, size 3 diapers and size 6 shoes. Currently (October 2010) Kinley is wearing size 2T clothes, size 4 diapers and size 7 shoes.

Kinley continues to be seen by Infant and Toddler Services of Johnson County (ITSJC). Her gross motor skills are up to date, but her fine motor skills still need a little more work. Kinley's biggest developmental delay, and ITSJC's main focus, is language/speech skills. In fact, her ITSJC appointments have been increased from every 2 weeks to every week to work more with her speech. Kinley is roughly behind by about 3 months in her speech development, but she has been able to keep pace to not fall any further behind. Hopefully the increase in ITSJC visits will help her to catch up on her language skills. Along with speech therapy from ITSJC, Kinley is seen by an Occupational Therapist (OT) every other week. Kinley's OT works with her on some sensory issues.

Tan-Tar-A

2010-10-15T15:57:00.000-07:00

In July, we took a family vacation to Tan-Tar-A Resort at Lake of the Ozarks. Kevin, Kinley and I, along with my parents, went last year for a long weekend and had so much fun that we decided to go for a whole week this year. Aunt Mary was also able to make the trip this year, so that was really nice.
I say "make the trip" like it is pretty far away, but really it is just a 3 hour drive. It is the perfect length for a car trip with a 2 year old and the atmosphere at the lake is much more relaxing than at home. It was really nice to get away for a little while, and we are already planning our next trip back to the lake.

We spent most days at the various pools the resort had. Kinley is getting to be quite the little water baby. She loves the pool and being outside! The resort had a baby pool that Kinley loved last year, but seemed a little too big for it this year. We spent most of the time divided between the toddler pool and the adult pool. Kinley liked playing with all her water toys in the toddler pool, but towards the end of the week she figured out how to get out of the toddler pool all by herself and go over to the adult pool.

I am sure she would just jump into the adult pool if we were not right there to stop her. She has no fear! In the adult pool Kinley likes to swim with mommy and daddy. Grandma and Grandpa Seep bought her a noodle and she would hold onto the noodle and kick her little feet behind. We really need to get this girl into some swim lessons. On the last day of vacation daddy let Kinley jump into the pool and into his arms as he was standing in the pool and Kinley thought that was really fun. Kevin also had Kinley put her face underwater to get her used to it and she didn't even mind that. Like I said before, total water baby. Watch out mommy and daddy, we have to keep a close eye on her while at the pool.

We also rented a pontoon boat one day and took it out on the lake. Just like at Big Cedar, Kinley's favorite spot on the boat was front and center. She was content to stand there and watch the water and other boats go by. It got pretty hot on the boat, so we did stop in a little cove, put the anchor down and took a quick swim in the lake to cool off a bit. As with everything else water related, Kinley seemed to enjoy the quick swim, but was ready to get back on the boat when it was time to head back.

Overall Kinley did really well on vacation for a whole week. Of course she enjoyed all the attention from being the only child on vacation, but she also ate really well and slept pretty good too.

Lenexa BBQ

2010-07-31T13:05:00.000-07:00

Wow, June was a pretty busy month for us. Each year some good friends of ours compete in the Lenexa BBQ and we try to make it out to the event to support them and taste the delicious BBQ! This year we were lucky enough to be able to make it out again. It was pretty hot out, even for being the evening, but that didn't stop us from having a good time and eating some great BBQ.

Kinley liked to try out all the different chairs.

Finally we got a couple of pics of Chase and Kinley together and both looking at the camera!

Shatto Dairy Farm

2010-07-31T12:44:00.000-07:00

Also back in June, our playgroup took a little field trip to the Shatto Dairy Farm just north of Kansas City. Shatto is a family run farm and we credit them with helping Kinley learn to drink out of a sippy cup. When Kinley was transitioning from the bottle to a sippy cup we let her drink the various yummy flavors of Shatto milk in her sippy cup. I think banana was her favorite, but they also have orange, chocolate, root beer and strawberry. Shatto was having a family fun day at the farm, so there were lots of people visiting and it was pretty crowded, but Kinley still got to see the cows up close and personal. Turns out Kinley was not a big fan of the cows, but oh well. We stayed just long enough to see all the exhibits and then a huge storm rolled in, so we left in a little rush. We made it to the car before the big downpour started, so that was good. Wasn't able to get many pics from that day, but here are just a few.

Hearing Update

2010-07-31T12:30:00.000-07:00

Back on June 14th, Kinley had a follow up visit with the audiology department at Children's Mercy Hospital. Her previous appointment showed a slight, low frequency hearing loss, but nothing that should be interfering with her speech. We were told to try and get her used to using ear buds or headphones so that they could do a more thorough exam at this visit.

Kinley did great during this exam. They were able to do the more extensive hearing test and found that Kinley does not have any hearing issues at this time. She passed with flying colors and we do not need another follow up appointment until next year! We will still need to have her hearing monitored since children born with CDH are at greater risk for progressive hearing loss, but at this time everything looks great!

Kinley 2nd Birthday Party

2010-07-30T11:44:00.001-07:00

For Kinley's 2nd birthday, Kevin and I bought her a new swing set for the backyard. We decided to have her birthday party be a backyard BBQ so that she and all the other kids could play on her new swing set. Looks like everyone had a fun time!

Kinley climbing up the ladder. She needed some help at first, but now she can go all the way up by herself and down the slide. She is getting so big, so fast!

Now what mom?

Trying out the different swings.

Opening up presents!

Look Dad, barrettes! (Now all we have to do is convince Kinley to keep the barrettes in her hair. She hates hair in her face, but won't keep any barrettes, hair ties or headbands on.)

Happy Birthday to you. Happy Birthday to you. Happy Birthday Dear Kinley, Happy Birthday to you!! We love you!!!

A Big Sister

2010-07-01T13:13:00.000-07:00

One of the reasons that I am so far behind on blog posts is because of some exciting news. Kinley is going to be a BIG SISTER!! Her little brother is due October 13th. So far the little guy is growing well and looks healthy! We don't have a name picked out yet, no furniture has been ordered yet, and I can't find any bedding that I like so we haven't even started decorating the new nursery. Lots to do and time is flying by.

I keep trying to explain what is happening to Kinley, but I don't think she will understand until he is here. I hope she adjusts alright. I worry since she is used to being the center of attention being an only child for now, and the only grandchild on both my side of the family and Kevin's. Also, given all that Kinley went through after she was born, well, lets just say she might be a little spoiled.

For the most part Kinley seems to take everything in stride though, and I am sure she will be a great Big Sister once she warms up to the idea.

Big Cedar

2010-05-19T05:46:00.000-07:00

I feel like every time I am about to get caught up with the blog, things happen and then I fall even more behind. So, I am back to playing catch-up.

The weekend of May 7th we took a family vacation with my parents to Big Cedar Lodge at Table Rock Lake. The resort was beautiful and we had pretty good weather. It was a little cool, but at least it didn't rain on us.

Kinley is getting so independent and wants to walk everywhere by herself these days. She loved all the bridges at the lodge.

Kinley wasn't used to all the hills and did fall a couple of times on her walks, but for the most part she did really well and had a great time exploring her new environment.

There was lots of fun stuff for Kinley to do at the lodge. One of the first things we did was take her horse back riding.

Kinley wasn't too sure about this, but we gave it a try anyway.

She did great petting her horse.

But not so great when it came to actually riding the horse.

She was happy again once we let her run around on her own. At least she tried something new and cheers up quickly after it is over!

The lodge also had a little turtle pond with tons of turtles. Here is Kinley getting her chance to see the turtles with grandma.

Later on that weekend we rented a pontoon boat and hit the lake. Kinley is such a water baby. At the back of the boat helping grandpa drive.

Hanging out with grandma at the front of the boat and enjoying the view.

It was a little chilly on the boat, so we tried to hang out on the front of the boat where the sun was. Luckily we put sunscreen on Kinley's face, but since I was just trying to warm up in the sun (not tan) I didn't even think about putting sunscreen on me. Bad move. My pale skin was not used to any amount of sun and I got burned. Oh well, at least it was near the end of the trip anyway. Lesson learned.

Even with her sunscreen, Kinley ended up hurting worse than me after the boat ride. While we were on the boat Kinley took a spill and gave herself a pretty good fat lip. We were able to get her all cleaned up, gave her some ibuprofen and iced her lip. She was a trooper and daddy knew just how to make her feel better, Phineas and Ferb on the ipod until she fell asleep and took a nap on daddy's lap.

Overall a fun weekend. It is always nice to get away, even if it is just for a long weekend.

Boo Croup

2010-05-18T13:15:00.000-07:00

I can't believe I forgot to mention that a few days before we left for Texas Kinley got sick for the very first time since she came home from the hospital. She has had a couple of minor colds, but this was the first time we actually had to take her to the doctor because she was sick.

Kinley had been running a temperature around 100-102 for a couple of days. We didn't think much of it, and just gave her Tylenol and Motrin to help. After a couple days of having a fever Kinley started to get a really bad cough. The cough was so bad that she even threw up a couple of times. You could just tell that she felt horrible. She was really fussy and didn't want to eat or drink anything. Kevin and I felt so bad for her that we basically let he have a few free days where she could eat her favorite foods and watch more Phineas and Ferb than we usually let her watch.

Once the cough got to where it caused her to vomit a couple of times, and since she had a fever for several days we gave in and took her to her doctor. Dr. S. took one look at Kinley, listened to her breathe and told us she had croup. He also did a strep test to rule out that possibility, but it came back negative. Just croup.

Croup is a viral infection that may or may not be accompanied by a fever. There is a characteristic cough and swelling of the upper respiratory track. It does not affect the lungs however, which is good news for Kinley. Dr. S. prescribed a 3 day course of steroids to help with the swelling of her upper respiratory track, but since it is a viral infection antibiotics would not help. We were told to keep giving Tylenol and Motrin for her fever. Dr. S. said croup usually lasts for about a week and since he saw her on day 3 of her fever she was about halfway through already. He said that she should be fine for our trip to Texas and that there was no need to cancel any plans. That was good news.

Sure enough after a couple more days Kinley started to get better which was great news for everyone. I think Kevin and I took Kinley's illness harder than she did. It was just heartbreaking to see her feel so bad. I know that we have been very lucky Kinley has been as healthy as she has been since coming home from the hospital, but that doesn't seem to be very comforting when you are dealing with a sick child at that moment. I guess I should be happy that all she had was croup, a fairly common childhood illness that any kid could get.

Back to Texas

2010-05-17T21:02:00.000-07:00

On April 22nd we packed up the car and headed back to Texas for another long weekend. The trip was planned around a baby shower for a good friend and sorority sister of mine. It just so happens that she married a friend and fellow TCU baseball teammate of Kevin. We stayed with them the last time we went down to Texas and we were able to stay with them again this time which worked out really well. They are expecting a baby boy this June and we wish them nothing but the best!

Each time we travel to Texas we always try to get back to visit the TCU Campus at least once. Last time we were there during football season and were able to catch a game. This time it was baseball season and we were able to go watch them play Friday night. TCU recently got a brand new baseball stadium which we saw for the first time on this trip. It was such a nice stadium! There was a picnic and grilling area out near right field that you could reserve, a little hill that looked over the first base line that kids would slide down while sitting on flattened cardboard boxes, and another area on the third base line with some more tables you could rent. They also host parties for kids. While we were there a little boy was having a birthday party and during one of the breaks between innings the kids at the party were allowed to run the bases. It was more like a minor league game than a college game. It was really fun to be back on campus and see the new field. Kinley did pretty well sitting through most of the game. She ate some nachos, Dippin Dots ice cream and towards the 5th or 6th inning she was getting a little restless, so Dad let her watch some Phineas and Ferb on his iPod. We ended up leaving around the 8th inning, but only because it was past Kinley's bedtime and we still had an hour drive back to the house. Here are some pics of the new baseball stadium at TCU. Pretty impressive.

Saturday morning we thought we would take Kinley to the Fort Worth Zoo. I was hoping that she would be interested in the animals, but the zoo was set up so that it was too hard for Kinley to see anything while in her stroller. We tried letting Kinley out of her stroller, but then she just wanted to run anywhere and everywhere. Kinley didn't seem to care about the animals one way or another. It didn't turn out how I imagined, but we still had a good time. Unfortunately this is the only picture I got of Kinley at the zoo, and you can't really even tell it was taken at the zoo, but oh well.

Later on that day we took Kinley to the park in the neighborhood where we were staying. She had a blast going down the slides and exploring all the new playground equipment. The weather was so nice while we were in Texas that we tried to spend as much time outside as possible. Kinley loves being outside right now!

We must have worn Kinley out on Saturday because she slept in really late on Sunday. While I was at the baby shower Kinley stayed home and rested with the guys. Sunday was pretty uneventful and then it was back home on Monday so I could get back to work. We always have a great time whenever we travel to Texas. Too bad it is an 8 hour drive or we would go more often.

Fairy Tale Village & Crown Center

2010-05-17T18:53:00.000-07:00

Towards the end of March Kevin and I took Kinley to Fairy Tale Village at Crown Center. Fairy Tale Village was a free exhibit for kids that we thought Kinley would enjoy. There were castles, bridges, forests and other fairy tale themed sets that the kids could play in. Kinley must have been overwhelmed by it all because she was not very interested in the exhibit. We did get a few pics though.

By far Kinley's favorite thing at Fairy Tale Village was this bridge. She just kept going over...

And back.

Here is Kinley crossing the bridge to get into the castle. You can't tell by the picture, but all Kinley did was go on the bridge, she was not interested in going into the castle.

Here is Kinley going into the 3 Little Pigs' House.

And here is Kinley making a dash for the exit.

After Fairy Tale Village we headed to the Crayola Store.

Kinley had a lot of fun in this store. She colored on the easel,

at the craft table,

and ran around the store to see what else she could find.

She found a colorful wheel of crayons.

She also found a coloring kit she thought she had to have.

Next we let Kinley work up her appetite by letting her run through the glass skyways downtown.

"Keep up Dad, quit taking so many pictures of me."

After all that it was time for lunch! Grandma Beamer, Grandpa Melcher and Aunt Kate all work near Crown Center, so we were able to meet them for lunch. We ate in the Crown Room at Hallmark. Hallmark has a really good cafeteria and by this time we were all hungry. The pics from lunch didn't turn out great, but here we all are eating lunch together. What a fun day!

We went back to Fairy Tale Village a few weeks later with Chase and his family, but sadly we didn't take any pics that time. Kinley enjoyed the exhibit a little more the second time around. I guess she just needed a warm up trip first.

Kinley's Second Haircut

2010-05-10T07:50:00.001-07:00

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

2010-05-10T07:21:00.000-07:00

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

2010-05-09T18:52:00.000-07:00

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

2010-05-06T19:32:00.000-07:00

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!

2010-05-06T18:35:00.000-07:00

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!

2010-05-05T12:52:00.000-07:00

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

2010-03-30T11:23:00.000-07:00

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!

Team Sofie and Team MJ

2010-02-28T19:22:00.000-08:00

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.

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.

3rd Annual CDH Awareness Blood Drive

2010-02-26T11:12:00.000-08:00

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!

Mark your calenders and get ready to donate!

2010-02-10T13:50:00.000-08:00

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!

Pigtails!

2010-02-10T12:00:00.001-08:00

1st Time Sledding

2010-01-17T19:34:00.000-08:00

Below are some pics and video from Kinley's 1st sledding experience. Due to the bitterly cold temperatures, mom and dad only let Kinley go down the hill twice. We bundled her up so much she could barely move.

As you can see, Grandma Seep had a GREAT time! Kinley didn't really know what to think. Maybe next year she will give us a little more emotion to work with.

Merry Christmas!

2009-12-30T09:10:00.000-08:00

Are you sure I can't open just one gift early? Please?

First of all, we hope everyone had a great Christmas and we are looking forward to 2010!

This Christmas was very different from the typical Melcher Family Christmas of years past in a few ways. First and foremost, it was by far the most hectic. It used to be that we rotated Christmas with my side of the family and Kevin's side of the family since my family used to travel to Minnesota for Christmas. Now that my family stays put in Kansas there is really no reason that we can't try to see everyone during the Holidays, and that is what we tried to do this year. I say try, because Old Man Winter did all he could to try and stop us. I don't know the total snow fall on Christmas Eve, but it must have been close to a foot of snow that fell here. And that wasn't all, we got a couple more inches the following days. On top of trying to celebrate Christmas with both sides of the family, this Christmas also fell on the week that I work. Nothing like working 70 hours the week of Christmas, trying to fit in seeing both sides of the family and contending with the umm..."gift" from Old Man Winter. It didn't seem to bother Kinley at all though, she just went with the flow for the most part and seemed to really enjoy all the excitement, which made everything all worth while.

Here is how Christmas 2009 broke down:

Christmas Eve my parents and sister came over earlier than planned in order to beat the snow. They were super helpful and cooked dinner at our house while I slept during the day. We ate dinner together and then opened up presents.

Then Kinley went to bed and I went to work. My parents and sister stayed at our house so that they were there when I got home from work Christmas morning.

Christmas morning I arrived home to find a shoveled driveway, a cooked breakfast and that Santa had come and left presents for Kinley! After we ate breakfast, Kinley opened her presents from Santa.

Then it was time for her and I to take a nap. We originally planned to go over to Kevin's mom's side of the family that evening, but the weather changed those plans.

The day after Christmas we packed Kinley up and headed over to Kevin's parent's house for breakfast and to visit with his dad's side of the family. Well, those members of the family that were able to make it with the weather. After breakfast, you guessed it, more presents. (Sorry, no pics b/c we forgot to bring our camera.) Then back home so Kinley and I could take our naps. That evening Kevin's parents and sister came over to our house for dinner and presents.

Finally, on Sunday morning we packed Kinley up again and headed out to Kevin's Aunt's house for breakfast with his mom's side of the family. This time we (the adults) opened presents first and then ate breakfast. We fed Kinley as soon as we arrived to help keep her on schedule.

Shortly after breakfast we had to pack up and get home so Kinley and I could take our naps.

I do have to mention the gift that Kevin got me for Christmas. He got me a really nice new camera that takes 4 pictures per second! It was getting hard to take pics of Kinley with our old camera because she rarely sits still anymore. Hopefully with the new camera we will have more pics to upload and will update the blog more often. Maybe that should be a New Year's Resolution, or would that just go by the wayside January 2nd with all the other resolutions?

We wish everyone a Merry Christmas and Happy New Year!

Kinley's 1st Trip to Texas

2009-12-15T13:18:00.000-08:00

On Thursday, November 12th (Mommy’s birthday), we packed up the car and headed down to Texas. Dallas/Fort Worth area to be more precise. The plan, to visit (and stay with) close friends from TCU, give Kinley her first tour of her future college (TCU) and to take Kinley to her first TCU tailgate and football game. GO FROGS!!!

This drive was very different from Kinley’s previous trips (Colorado and Minnesota) because we did the entire drive during the day. Kinley handled the change quite well. She must be getting more comfortable with her forward facing car seat because she actually took two naps. She also ate decently, as well as can be expected from Kinley when she is in a new place. We made sure to feed her outside of the car to avoid any chance of “back fire” in her car seat. Kinley’s choice of dining establishments were McDonald’s (on I-35 turnpike) and McDonald’s (somewhere in Oklahoma). We were able to arrive at our friends’ (Kevin and Candice) home in time for our dinner and Kinley’s bedtime meal. Traveling during the day was not an issue with Kinley, but stopping to feed her (twice) did add 2 hours on top of the already 8 hour drive.

On a personal note, Kathy and I are not fans of the toll highways surrounding Dallas. Luckily, Kevin and Candice gave us excellent directions to follow whenever they were not actually with us in the car.

Our first day in Texas, Friday, was a pretty busy day. Kevin and Candice (only a half-day) had to work, so after breakfast Kathy and I packed Kinley up and headed to TCU. TCU, like many other colleges, tends to have some parking issues. This was not helped by the fact that it was a football game weekend and that ESPN College GameDay was on campus. Luckily we were able to find a spot in the TCU Bookstore parking lot. Once Kinley was situated in her stroller we headed into campus to take a look around and show Kinley where mom and dad went to school. TCU’s campus is pretty compact so the tour didn’t take too long, but there was plenty to see because a lot of things had changed since mommy and daddy were there plus, ESPN was setting everything up for College GameDay. In fact, there were already some students claiming spots for the next day’s show.

We also stopped to pick up our football tickets for Saturday’s game. Before returning to the car we had to stop at the TCU Bookstore, so we could all get some new TCU apparel. Before heading back to Kevin and Candice’s we stopped at one of our favorite restaurants in Fort Worth, Charleston’s, so Kinley could eat lunch. By this point Kinley had become pretty comfortable eating out at restaurants.

When we arrived “home” we found that Candice was home too. We “grabbed” Candice and headed to the local mall to do some more shopping. (Don’t worry, Kinley took a nap both to and from TCU.) I dropped the ladies off so I could take our car in for an oil change. When I joined back up with the ladies I found that Kinley had completed her shopping so Kathy and Candice were free to shop for themselves. (While in Gap, I ran into my K-State baseball teammate/roommate’s wife.) Once we had all had our fill of shopping we met up with Kevin and went out to dinner at Abuelo’s. Kinley absolutely loved their tortilla chips.

Saturday was definitely more of a day for dad and Kevin. We woke up extra early to go to TCU and be a part of College GameDay. I won’t bore you all with details, but it was an amazing experience.

Kinley hung out at “home” with Kathy and Candice and they all joined us that afternoon, once the tailgate was all set up. We set Kinley’s booster seat right on the asphalt, in the middle of a circle of chairs, and she ate/tried just about everything we gave her. She was definitely showing off for everyone. After she was done eating we let her roam around, but she always ended up walking down hill and never wanted to walk back up. We figured too much walking around (and visiting other tailgates) would wear her out and make her cranky, so we put her in her stroller and I walked her around the parking lot. Game time finally rolled around and we all headed toward the stadium. The game was completely sold out, plus TCU sold an additional 5,000 standing room only tickets. Needless to say, it was packed.

Photos above courtesy of Kevin and Candice.

We had purchased end-zone (cheaper) tickets because we were not sure how Kinley would handle the game. She made it through the national anthem and the first five minutes of the first quarter, but then she decided that was enough. We placed her in her stroller and decided to walk around the stadium. The downside of walking around was that we couldn’t see the field due to all of the standing room only tickets. We decided we would head “home” and watch the remainder of the game there, but before we could go mom and dad had to get some Dippin’ Dots. Kinley confirmed that she is definitely our daughter because she could not get enough Dippin’ Dots. Her mouth was open and ready for more just seconds after we had given her a bite.

After arriving “home” we were really depressed, for two reasons. The first was that the TCU game was not nationally televised and therefore we couldn’t watch it. We did listen to it though. The second was that we realized that we are not very experienced parents. We forgot to take any pictures of Kinley at her first TCU tailgate and football game. Here are a couple pics after we realized we were bad parents.

Sunday ended up being a day of relaxation. For the most part we simply hung out at the house, but we did take Kinley on a walk around the neighborhood. We couldn’t pass up the gorgeous Texas weather. It was 78 degrees, in the middle of November!

Monday morning we packed up the car and headed home. We all had a great weekend and are hoping to do it all again in 2010.

Our Little Dancer

2009-12-02T09:05:00.000-08:00

I wish I had the audio for this video, but just imagine that every time Kinley presses the little button on her snow globe it starts playing music.

1st Trip to Minnesota

2009-11-27T19:03:00.001-08:00

In early October Kinley made her first road trip to Minnesota. (Don’t worry, Kathy and I were with her to make sure she drove safely.) This road trip was around 11 hours long (not including stops) so we decided to drive through the night again, like Colorado. But to avoid the same incidents from our Colorado trip we scheduled a stop in Des Moines, to feed Kinley and visit some good friends. One of my good buddies, Brock from KSU baseball, lives in Urbandale with his wife, Liz, and their baby boy Hudson, a possible future boyfriend for Kinley. We planned the drive from KC to Des Moines to coincide with Kinley’s afternoon nap, but she didn’t sleep a single minute of the drive. The reason for her unwillingness to sleep during the drive is because Kathy and I had to turn her car seat to forward facing right before we left. Originally we worried that Kinley’s lack of sleep during the drive would make her fussy while visiting our friends. Fortunately, for everyone, she was not. Kinley ate as soon as we arrived in Urbandale and then spent the evening playing with Hudson. After Kinley’s “bedtime” feeding we loaded up the car and continued our drive. Thank you Brock, Liz and Hudson for allowing us to visit and use your home to feed Kinley. It really made our entire trip a lot easier.

Kinley’s new forward facing position continued to be an issue for her. She did sleep until around 1 am, but woke up when we stopped for gas and remained awake until we arrived at our destination at 5 am. We immediately broke out her pack & play and set it up in the guest room to try and let her get some sleep.

The main reason for this trip was to allow Kinley to meet her Minnesotan relatives, before it got too cold and too far into cold and flu season. Both sides of Kathy’s family live in Minnesota. We arrived early Friday morning (Kathy’s parents were already there), and soon after the house was full of family. In total: the three of us, Kathy’s parents, three of Kathy’s aunts, two of Kathy’s uncles and three of her cousins (all Kathy’s mom’s side of the family). Plus two dogs and one cat, we did bring Kobi. Kinley did great with the house full of people and pets. She wasn’t bothered by the crowd like she has been in the past. She was happy, played with everyone and even let family hold her.

The only rough spot of the entire trip was that Kinley had some MAJOR constipation. It was so bad we had to go out and buy her some suppositories and Miralax. Normally not a huge deal to buy, but we were in the cute, small town of Outing, Minnesota on a Friday night. The only store still open was a little grocery store that didn’t carry what we needed. We ended up driving to Brainerd, about an hour away to the nearest Walgreens to get what Kinley needed. Other than the constipation, Kinley had an absolute blast with everyone.

One of the highlights of the trip is that it snowed while we were there. That is not supposed to happen in early October, even in Minnesota.

For our drive home we were able to plan a similar driving schedule as the one we used coming up. Kathy’s aunt and uncle (on her dad’s side) live near the Twin Cities and we dropped by to say hello and also feed Kinley her bedtime meal. While Kinley was eating , Kathy’s uncle helped us find a Caribou Coffee that was still open. (We always make sure to get Caribou Coffee whenever we are in Minnesota.) Before hitting the road again, Kathy’s aunt and uncle packed us a bag of frozen venison and salmon. Kathy’s uncle is a big hunter and we LOVE venison. Kinley slept much more on the way home than on the way up. Luckily she stayed asleep when we stopped for gas. I also think that she was getting more comfortable with the forward facing position and she was probably worn out after meeting so many new people, discovering new places and traveling like a pro.

No More Medical Bills

2009-11-22T21:15:00.000-08:00

As of November 10th, 2009 we are officially done paying medical bills for Kinley's stay at Children's Mercy! It took just about 18 months, but we finally got everything settled with insurance and the billing department at Children's Mercy. Yeah!! (sigh of relief)

The whole process actually went better than I expected considering how long Kinley was at Children's Mercy and how high her medical expenses were. I am not sure what the final total was for all her medical expenses, but I am sure it was over $1 million. The largest bill that we ever got was for $541,767.46. After multiple calls to the billing department, the insurance company, and the pediatrician's office, 18 months later it has all been taken care of and we ended up only paying the co-pays that our insurance plan requires. It it so nice to have that all behind us now.

Here are a couple pics of Kinley showing how she feels about the situation.

Those were the best pics I could get of her smiling. It is super hard to get pics of Kinley now because she is constantly on the move. And yes, that is Kinley playing in Kobi's bed in the second picture. Kobi is a great role model for Kinley because she is really good at sharing.

I also tried to get a video of Kinley's football cheer and was fairly successful with that. If you watch closely, towards the middle of the video Kinley claps once and then puts her hands in the air signaling "touchdown".

Better Late Than Never

2009-11-10T13:09:00.003-08:00

Way back, on September 27th, Kinley was finally baptized! At 16 months old, a traditional baptismal gown would not work. We had to get a dress that would fit her as well as allow her to walk. Ever since she took her first steps she hasn't really stopped walking. She is constantly on the go! Anyway, we found a cute little white dress that was meant to be a little flower girl's dress and it worked out perfectly. We also drove all around town trying to find the perfect shoes to complete the outfit and finally found a really cute pair of white tennis shoes with pink rhinestones. They were the perfect combination for walking and dressing up, or so we thought.

Kinley's baptism was at the beginning of the service, so that worked out really well. She did great and even let the pastor hold her during the ceremony. Kevin and I were shocked. I think Kinley was just overwhelmed and didn't really know what to make of the situation. She was startled by the water, but still didn't cry. We were so proud of her! She did great and was so cute.

Shortly after her ceremony, Kinley started to get a little fussy and tired of sitting still. At first Kevin tried to distract her (picture below). Unfortunately it didn’t last so I took her out of the sanctuary to walk around and play for the rest of the service. Kinley walked/ran around for a long time and then got tired of that and started trying to crawl, but it was too hard to crawl in her dress. By this time she was getting very fussy. When the service was finished we quickly took her home and changed her into something she was more comfortable playing in. We were in such a hurry to change her that we didn't realize we hardly got any formal pics of her in her dress. What a disappointment. We really wanted some pics of Kinley with her Grandparents, and her new Godparents (Jess and Kim Adams).

Kinley texting on dad's phone

Once she was changed she had a good time playing with everyone at the little celebration we had for her at our house afterwards. She ate a little pizza, had some cake and mingled. I think all the festivities finally got to her though, because she ended up getting fussy again and called it an early night.

Oh, and just an FYI to any parents out there-once your child starts walking make sure to break in their new shoes. Since Kinley had just started walking I didn't even think about having to break in shoes for her, but all that walking she did after her ceremony in her new shoes totally gave her blisters. I am sure that is part of the reason she was so fussy. We felt so bad.

Little By Little

2009-11-09T08:20:00.000-08:00

Well, little by little we are getting caught back up on the blog, and little by little Kinley is making progress as far as language development goes.

At one of Kinley's Infant and Toddler therapy sessions back at the beginning of October we decided that it would be beneficial for Kinley to be seen by Debbie, the Early Childhood Development/Speech Language Pathologist on a weekly basis. Prior to this all her therapy sessions had been every other week. I guess Kinley got the clue because she started to make more progress since she has been getting weekly sessions with Debbie.

Kinley is now just over 17 months and has recently started to point (on occasion) to items that she wants, she has also started to wave hello & goodbye, she can clap her hands when we say "yeah, Kinley", she can give a high five, give a hug, and on a couple of occasions she has used the sign for "more" correctly. This is a huge improvement from where we started out just a few months ago when we were concerned that she may have hearing issues because her language skills were taking a little longer than expected to develop. Debbie had said she thought Kinley was focused on gross motor skills and that as soon as she started walking, language development would be next and that seems to be the case for Kinley.

In addition to all the hand signs that were mentioned already, Kinley is also starting to babble a little more and there have been a few occasions where it looks like she is really trying hard to communicate with us, but of course all we hear is babbling, a good sign none the less. Kinley's new favorite thing to say is ba-ba. This works out great and she fools a lot of people because she will play with her ball, baby and bottle and everybody just thinks she is saying the object that she is playing with. She will also say ba-ba when waving and it sounds like she is saying bye-bye. Finally, she has been playing with her lamb a lot recently and we will say, "Kinley, what does your lamb say?" ba-ba (ie bah-bah). It is pretty cute even if she doesn't totally understand what she is saying.

Kinley is also getting a better attention span. Just recently we have been able to read books to her and she will sit and listen/turn pages for a whole book at a time. Previously we had been able to get a couple of pages out of a book and that was about all. Kinley also recently got a new craft table and she can sit and color for several minutes at a time. She actually has just as much fun coloring with the cap on her marker as she does with it off. I think she likes the sound it makes on her table. She played with play-dough for an extended period of time when her friend from Parents as Teachers came by for a visit. Kinley really liked the play-dough when it was rolled up into balls and she had a blast putting it in a little container and then dumping all the balls of play-dough out. Kinley did not like the play-dough when it was in the shape of a snake. Go figure. At least she know what she likes. Speaking of knowing what she likes, Kinley has also started to shake her head "no". We don't think she knows what it means yet because she will shake her head and have a huge smile on her face, but once she figures out how to communicate "no" we will be in trouble.

Other new developments for Kinley are that she can feed her baby a bottle, walk just about everywhere including outside on hills and up and down stairs (with some hand holding assistance from mommy and daddy of course), she has even tried to run on a couple of occasions and does pretty well with that. She will walk backwards when she has her little toy stroller to pull and she is trying more and more new foods each day. She has several toys that make noise and if she hears a song she likes she will start to dance. Unfortunately for Kinley, we think she inherited her mommy and daddy's dancing skills. It is still really cute to watch her move to sound and know that she is having fun.

Kinley is getting more comfortable around others which has made traveling with her easier. It is also a lot nicer for grandmas and grandpas, as well as aunts, and all Kinley's other relatives who want to spend time with her. It was also really great on Halloween. We didn't take Kinley out trick-or-treating, but Kinley had just as much fun watching all the dressed up kids in the neighborhood come to her door.

We really can't believe how Kinley is transforming into a little girl so quickly and is no longer our fragile little baby. Each day she amazes us and it is so much fun to watch her develop into our little girl.

In addition to strengthening Kinley's new developing skills, Debbie (and mommy and daddy) are working with Kinley to learn body parts, especially nose, mouth and eyes. We are also working on the sign for "all done".

HAPPY HALLOWEEN

2009-11-02T09:07:00.000-08:00

We have fallen a little behind in our posts, but wanted to get some Halloween pics up, so as soon as we get a chance to catch up on the blog we will have to back track a little. Oh, the life of a parent...too much to do and too little time. Anyway, enjoy the Halloween pics. Kinley was a doctor this year. She got a really cute pair of scrubs from her Great Aunt Jody for her birthday and we couldn't pass up this chance for her to wear them. Thanks Jody!

Dr. Melcher with her cup of coffee getting ready for her shift.
Did someone say "code blue"? I'm on my way!

Dr. Melcher at the scene of a car wreck.

Not to worry, no one was hurt and I can go back to my coffee.

This was the best pic we could get showing Kinley in her scrubs. She even has Dr. Melcher embroidered on them. So cute.

Whew, rough day at work. Time to unwind and watch some TV.

Relaxing.

On a side note, Kinley has learned how to give Kobi a treat after she goes outside.

Kobi is great with Kinley and so patient.

Tailgating At The KU Game!

2009-09-27T12:03:00.000-07:00

Yesterday we were lucky enough to be able to take Kinley to the KU game and do some tailgating on the hill. The weather was perfect and we had a great time. To top things off KU won! We met Chase and his family at the game so Kinley had a buddy to help her cheer on the Jayhawks.

Kinley sportin' her Reesing jersey.

Kinley was everywhere during the game. Chase's parents set up a cool tent and play area for the kids, but Kinley preferred to roam around and visit all the other tailgaters. She walked up and down the hill at times and other times she crawled. She barely sat still the whole time we were there. She had fun though, and that is the important part. Mom and Dad were worn out by the end.

Mommy and daughter on the hill.

We were able to get a few pics of Kinley and Chase playing together. (On the rare occasions when Kinley was sitting still.)

This was the best pic I could get showing Kinley and Chase both wearing their #5 jersey. Looks like we need to get Kinley a little basketball and Chase's parents need to get him a little pink elephant. Haha.

Group picture. Rock Chalk!

Here is a picture I took after we got back home. Kinley practicing getting drinks out of the cooler for the next time we go tailgating.

Kinley Is Walking!

2009-09-25T21:27:00.002-07:00

Just before we left for Colorado Kinley started taking more than just a step here and there. Her primary means of transportation was still crawling though. I was hoping that Kinley would try to walk more in Colorado being around Jasmin, but Jasmin ended up crawling with Kinley more than Kinley ended up walking with her. Jasmin was such a good host and made her guests feel at home. Oh well, Kinley must have been taking notes on walking because she has really taken off since we got home. See for yourself in this little clip.

Kinley still crawls about 50% of the time, but as you can see she is getting pretty good at walking now.

Trip Home From Colorado

2009-09-25T21:27:00.001-07:00

NO BOTTLES IN THE CAR was our motto for the trip home. So, about 3 hours into our drive home we stopped at a Wendy's and got out to eat a late dinner. I ate while Kevin fed Kinley her bottle of Pediasure and Kevin was able to get Kinley to take all 8 oz. Then it was my turn to watch Kinley as Kevin ate. Well, before Kevin was even able to order his dinner Kinley sent all 8 oz of Pediasure back up, right in the dining room of the Wendy's. Kevin and I felt bad for Kinley and also for the people around who had to witness the ordeal. The other guests were really nice and brought several napkins over to us to try and help, but there was a lot to clean up. I took Kinley to the bathroom and undressed her, washed her off as best I could, then changed her clothes while Kevin attended to the mess that Kinley left on the floor. We just tossed her outfit, bib and burp cloth and left Wendy's as soon as we could. We later went through the drive thru because in our hast to clean up and get out of there we forgot that Kevin still had not gotten a chance to eat. I decided to try and give Kinley a few Goldfish crackers in the car a little later since she basically missed dinner, but stayed away from any other bottles for the rest of the trip. I felt bad not giving her anything else to drink, but we had a long drive ahead of us still and we could not keep stopping to feed her just to have her throw it all up again. Luckily Kinley cooperated and slept for most of the drive that we had left. The rest of the drive was pretty uneventful.

When we did arrive home the next morning Kinley was starving. She ate better than we had seen her eat in a long time and drank more than 8 oz of milk from her sippy cup. (Kinley's sippy cups are 8 oz and we had to refill the cup during her feeding.) Anyway, from that point on Kinley has really taken off with her table foods and sippy cups. We haven't touched a bottle since we got home because Kinley is drinking so well out of her sippy cups during the day!! She has also been trying new foods or accepting old foods that we haven't been able to get her to eat in a while. Some of those old foods include applesauce, cheese, freeze dried fruit, french toast sticks and yogurt. Some of the new foods Kinley has tried include grilled cheese sandwich, sliced chicken deli meat sandwich, animal crackers, and a peanut butter and jelly sandwich. The trick to getting Kinley to eat any sandwich is to cut it up and feed it to her, one bite at a time, on a fork. She is also getting better at feeding herself with a spoon.

Kevin and I are thrilled with Kinley's progress. We are a lot happier now that she is eating better and she seems to be a lot happier also. We don't dread mealtimes anymore and that is really nice for a change.

Pics From Colorado

2009-09-24T21:22:00.000-07:00

Kevin and I love visiting Arin. It is such a different atmosphere compared to where we live, so it is a nice change of pace. Arin and her husband live on a ranch in the northwest corner of Colorado along with their daughter, who happened to be celebrating her birthday while we were there.

View from Arin's house down the driveway.

This is the river that runs near the house.
Picture of their garden. We ate fresh sweet corn, zucchini, carrots and tomatoes while we were there. Delicious!
We were able to be there for Jasmin's birthday party. While Kevin and I were happy about that, Kinley was not too sure about all the extra guests. Kinley was fine when she was playing in the playroom, but as soon as Kevin or I took her out in the living room/kitchen area she freaked out and started screaming. We finally gave up on having her attend the party and dressed her up in her warm clothes so Kevin could take her for a walk. Funny thing is, when she was all bundled up and in her stroller she didn't mind being in the kitchen or living room with all the other guests. Kevin never ended up going for that walk with her, we just left her all bundled up, in her stroller inside and she was content.

Jasmin getting ready to blow out her candles.

Opening gifts.

Look who finally made it out of her stroller to get a better view of all Jasmin's gifts. Still bundled up, but making progress.
Even more progress as Kinley shed her hood and hat. She doesn't seem to sure about it though.

Kinley was able to see pigs up close and personal for the first time. She was fearless with that fence between her and the pigs.

Kinley's first time riding a real horse. Thanks for sharing Jasmin!

On the very last day of our vacation, as we were about to leave, Kinley finally let Arin hold her for the first time.

Thanks so much for a wonderful vacation. We had a great time!!

P.S. If you are wondering how Kinley ate on vacation I would have to say medium. We fed her at the table in her Bumbo with Phineas and Ferb on for most meals. She ate pretty much the same on vacation as she had been eating at home before we left. We tried a bottle a couple of times while there and she did OK. She would take most of the bottle, but then spit up just a little once in a while. Kinley did try a couple of new foods on vacation with her favorite being sausage from a breakfast burrito. Overall I would say she did pretty good for being away from home.

Trip To Colorado

2009-09-24T19:43:00.000-07:00

Since Kinley did pretty well on the previous vacation to Tan-Tar-A, we decided it would be nice to take a trip to Colorado and visit my college roommate from TCU. (Before I went to KU for pharmacy school I went to Texas Christian University in Fort Worth, TX and got my undergrad degree in Nutrition.) Anyway, from our house to Arin's house should have been a 13 hour road trip.

Kevin and I decided the easiest way to make the trip with a 15 month old was to drive through the night. We ended up leaving our house at 10 am on a Tuesday a couple of weeks ago and drove to Topeka to visit my parents for the day before leaving there at 7 pm. From Topeka the trip should have taken only 12 hours, plus there was a time change so we expected to arrive at Arin's around 6 am on Wednesday.

The trip started off great. Kinley had gotten used to her new car seat and traveled pretty well in it. Around 8:30 pm I gave Kinley her night time bottle in her car seat as we were traveling so that we could stay on pace to arrive on time. I have given Kinley bottles in her car seat before and she does just fine. In fact, sometimes she eats better in the car. I was able to get Kinley to take her whole 8 oz bottle of Pediasure (woohoo). We kept traveling and just before we hit Hays, KS all 8 oz of Pediasure came back up. There was Pediasure on Kinley, in her car seat and on the seat of the car. It was everywhere, and so was the smell! I was ready to turn around, cancel the trip and head home. Lucky for me, Kevin is good at staying calm and rational in these situations. He used the GPS to find a hotel in Hays with laundry services and saved the day. (He is so smart!)

We ended up stopping at the Ramada in Hays and I was fully willing, and expecting to pay for a room for the night just to give Kinley a bath and do a load of laundry. I was shocked when Kevin came back from the front desk and said they were going to let us use a room for free! The laundry services were coin operated, so we paid for that, but that was pretty cheap. When Kevin explained to the gentleman at the desk what had happened he said they had a whole wing where the air was broke, so they could not rent out any of those rooms anyway. He said we could just use one of those rooms. Kevin and I didn't care about the air not working, we just needed to clean up, so it worked out great. They were really nice at the Ramada. Here are a couple of pics of Kinley (after her bath) crawling up and down the hall as we waited for the washer/dryer to end. Keep in mind it is around midnight and she is wide awake.

I was able to get Kinley to take another whole 8 oz bottle of Pediasure while we were at the hotel, and that one stayed down!

After our fun little stop in Hays we were back on the road again. We made it past Denver and just about an hour and a half shy of our destination without any problems. That is when Kinley woke up and I had the bright idea to give her another bottle for breakfast instead of stopping and letting her eat table food. We didn't plan on our stop in Hays though, so I thought a bottle would be better so that we could keep traveling. It was 8 am by this time and if we didn't have to stop earlier we would have arrived at our destination 2 hours ago. Just about 2 oz into the bottle Kinley sent it right back up. Again all over her and her car seat. At least this time in was only 2 oz and it didn't get on the seat of the car. We were in the middle of nowhere Colorado, so we didn't have much of a choice but to keep going. Needless to say, I didn't try feeding Kinley a bottle in the car again. I don't think the problem was car sickness, because she has eaten just fine in the car in the past. I think she was still getting over her cold and that made it hard for her to take a bottle.

We finally ended up arriving around 9:30 am and the first thing we did when we got there was to give Kinley a bath and do another load of laundry. Kevin is an expert at taking the new car seat out of the car and taking it apart to wash.

Aftermath From The Five Shots

2009-09-24T19:07:00.000-07:00

We were told even before Kinley got the shots at her 15 month check up that she might run a little fever for a few days, be a little extra fussy, and not eat quite as well as normal, but we were not prepared for how much the shots really affected her.

I know having a child with CDH means ups and downs, and to be fair I should post on both the ups and downs, but after a long mealtime, or day, or week, or weeks of fighting with my daughter to eat or drink anything, the last thing I want to do is type it all out for a post. This is one of the reasons I haven't posted in quite a while.

Kinley did run a low grade fever for a few days after the shots. She was also pretty fussy. We struggled to get her to eat or drink anything. I am sure this would be frustrating for any parent, but for parents of a child with CDH it is heartbreaking. We struggle with eating on a daily basis anyway, so when there is a decrease in her intake it really gets to us. To make matters worse, Kinley started to get a little cold just after she should have been getting over the aftermath of the shots, so that just prolonged her decreased intake.

We tried all we could to help Kinley with her symptoms, Tylenol for fever, vaporizer and Vicks Babyrub for her congestion, but in the end she just needed time and rest to get back to normal.

Luckily Kinley started to get a little better just before our trip.

15 Month Check-up

2009-08-31T10:08:00.000-07:00

August 28th Kinley had her 15 month check-up with her pediatrician. Kinley's appointment was at 10:00 AM to coordinate with nap time and feedings, which we like to do at home. Anyway, at 11:00 AM we were still sitting in the packed waiting room so I got up and politely said, "I realize you are busy, but if it is going to be much longer could we please just reschedule because it is getting dangerously close to nap time for Kinley and she is getting really fussy". (For those of you who know that I have a little temper and basically have no patience when it comes to waiting for appointments, after all, that is the reason you schedule appointments in the first place, I really did try to stay calm. Normally this doctor's office is pretty good, but they must have had a scheduling debacle this time or something.) I was told that if I wanted to reschedule the next appointment would not be until the end of September, but that Kinley could see the nurse practitioner instead of the doctor and then they could get her in quicker. While I was disappointed, I agreed to see the nurse practitioner so that we could move on with the rest of our day.

We were called back shortly after that and we didn't have to wait in our room long before the nurse practitioner came in to see Kinley. Kinley did concern the nurse practitioner right off the bat though. He must not have looked over her chart before coming into the room, which I get if he was trying to help out and speed things up for us, but he kept asking the regular questions for a 15 month check up and this was basically how the first few minutes of her exam went:

ARNP: Do you have any concerns today?

Kevin and I: No.

ARNP: So how many words does Kinley have now?

Kevin and I: None.

ARNP: None? What about mama or dada?

Kevin and I: No.

ARNP: And how long has this been going on?

Kevin and I: (Not really sure how to answer this question.) Well, since she has not started to say any words yet, I guess since birth.

ARNP: Can she point to different body parts, like her belly, if you ask her to?

Kevin and I: No.

ARNP: Is she walking?

Kevin and I: No.

Kevin and I finally decided to end this and explain everything that Kinely has been through and that she is being followed by an OT, Speech Pathologist, Early Childhood Development Specialist, and Audiologist just to name a few. This made the nurse practitioner feel better and we were able to move on with the exam.

Kinley passed the rest of her exam with flying colors and once again got a comment on how well her vocal cords work. (Kinley usually screams when she is in any doctor's office and the fact that we waited so long made her extra fussy.) Plus she ended up getting FIVE shots, so that was just the icing on the cake for her. Poor Kinley, she really had a rough appointment and I can't say that Kevin or I did much better. It still hurts every time we see her get shots. At least they were able to give her the flu shot so we have that out of the way. I am glad we don't have to came back in a few weeks just for that.

As far as Kinley's measurements go, she weighed 21.9oz (30%) and her length was 30 inches (50%).

With Kinley getting closer and closer to that 22lb mark Kevin and I decided it was time to bite the bullet and get her a new car seat. We went and got her a fancy new chair that we were all excited about. We finally got it installed and let Kinley try it out and she hated it. The one we got can be rear facing for kids up to 35lbs, so we decided to keep her rear facing. I didn't think it would be much of a change for her, but she definitely noticed and was not a fan of the new chair. I am sure as she gets more comfortable with it she will realize how much better it fits her and then start to love it.

Sorry, no pics of Kinley in her new carseat. Maybe next time.

ENT

2009-08-31T09:47:00.000-07:00

If you remember, not the last time Kinley was at the Special Care Clinic, but the time before that it was recommended that Kinley see an ENT. The reason for that recommendation was 1) follow-up from being on the vent for the first month of her life and 2) because Kinley was making a noise that sounded kind of like she was gasping for air, but Kevin and I knew it was just a noise she made every once in a while because she was excited and having fun. We were not concerned about the noise at all but thought it might be nice to get a follow-up with an ENT to make sure the vent didn't cause any damage to Kinley's throat.

Well, last week Kinley finally got in to see the ENT. The visit went pretty much like I thought it would. The nurse came in and did her assessment of Kinley, Kinley screamed through the whole assessment, and then the ENT came in and said Kinley looks ( and sounds ) great. The ENT said if we wanted her to scope Kinley she could, but since Kinley is eating and drinking without too much trouble and her vocal cords seem to work well there was really no need to put her through the procedure. The procedure would involve the ENT putting a little camera up Kinley's nose and then down her throat. To Kinley it would feel a lot like getting an NG tube placed and Kevin and I didn't see any reason to put Kinley through that. Especially when the ENT said that even if she found anything they would not consider treatment unless it started affecting Kinley's speech, breathing or eating.

It was a quick and painless appointment although anyone who heard Kinley screaming on our way out might have thought otherwise.

HAPPY HOMECOMING

2009-08-16T18:36:00.000-07:00

One year ago today we brought Kinley home for the very first time! Kevin and I were so excited to show her off to family and friends since we were finally able to be with Kinley and have more than 1 person in the room at the same time. (You are only allowed 1 visitor at a time in the NICU.) We planned a small homecoming party for Kinley at our house on the day she came home. What Kevin and I did not plan on was that we stayed up pretty much all night, the night before, in our PCU room at Children's Mercy with Kinley. Then it took longer than we planned to be discharged. By the time we actually got home and settled in Kevin and I were pretty worn out, not to mention that just after we left the hospital Kinley started throwing up after feedings. I guess you could say we were worn out and stressed. Not the best combination, especially for me. Needless to say, we were not very good hosts that night. All the excitement of bringing Kinley home, coupled with all the responsibility that came with it got the best of us.

Tonight, to celebrate the 1 year anniversary of Kinley's homecoming we had the same group over for dinner and it went much better. For starters, Kevin and I stayed awake. Kinley played and ate dinner with everyone and there was no throw-up to clean up afterwards. Yeah! It was awesome to see Kinley having fun and doing so well now. It was also really special to celebrate this milestone with the people who were there 1 year ago.

Now for the pics...

She loves playing in her rocking chair and watching a little Phineas and Ferb.

Somebody stole Daddy's straw right out of his drink.

So close to walking, I really think it will come any day now.

Shawnee County Courthouse

2009-08-14T18:42:00.001-07:00

We took Kinley to the Shawnee County Courthouse on Thursday since she was subpoenaed. Not really, but Grandma Seep works at the courthouse and she did ask us to come visit. It was really nice to bring Kinley to the courthouse (finally) because Grandma Seep and her co-workers have done so much for us and for CDH. Kinley did great at the courthouse meeting everyone and the trip to Topeka and back went pretty well also.

Here is Kinley with Grandma outside the courthouse.

Special Care Clinic...Again

2009-08-14T18:15:00.000-07:00

I know I said last time that it would be our last visit to the Special Care Clinic, but we ended up going one more time. This time was a little better than the last time we went, but it still takes up most of the day and Kinley screamed the whole time we were there.

Basically we learned that Kinley now weighs 21 lbs (yay!), is still sating 100% (yay!), and we got the go ahead to stop Kinley's thickener (yay!). Before the appointment we had been giving Kinley unthickened whole milk in her sippy cups with meals, but she still got 1 bottle of Pediasure at bedtime that we thickened with half a packet of nectar thickener to 8 oz of the Pediasure, so she was not really on much thickener, but it will be nice to get her totally off thickener now. Other than that, it was a pretty uneventful appointment. I just felt bad that Kinley was so stressed out and screamed the whole time. Poor Kinley. She slept pretty well on the way home though.

I guess it is time to start thinking about a front facing car seat for Kinley. We still have her in her rear facing infant car seat because it goes up to 22 lbs., so there wasn't really a reason to switch to a front facing car seat before now. I am sure Kinley would like to finally be able to see where we are going rather than where we have been. She is growing up so fast.

A Big Switch

2009-08-14T18:00:00.000-07:00

This past Monday was Kinley's last scheduled OT visit with Infants and Toddlers of Johnson County. Kinley has improved so much with her eating and motor skills that she does not qualify for their OT services anymore. While we are extremely happy with Kinley's progress we will definitely miss Jami. Thanks for all your help with Kinley and her eating!

Next Wednesday Kinley will start her visits with the Early Childhood Development/Speech Therapist from Infants and Toddlers. We will be focusing on Kinley's language skills since she is still not saying any words. We are hopeful that with a little focus and hard work Kinley will start to pick up her language skills just like she did with her eating and motor skills.

We are so thankful for the great staff at Infants and Toddlers of Johnson County. They have been great with Kinley!

Tan-Tar-A

2009-07-27T08:53:00.000-07:00

We left for Tan-Tar-A Resort at Lake of the Ozarks on July 16th and were there for 4 days. (Finally I finished this post, with a few minor complications that will show up towards the end.) We went with Grandma and Grandpa Seep and it was Kinley's VERY FIRST VACATION! Kevin and I were a little worried about how Kinley might react being away from home especially for eating and sleeping, but Kinley surprised us both and did really well. It was such a fun trip! If only we could go every week.

From our house it took us just under 4 hours to get to the resort (I think the GPS took us the long way). Kinley slept for most of the trip and just woke up and got a little fussy towards the end, but that is to be expected. We made it without having to stop more than once, so that was great.

Once we got to our room we settled in and tried to make it as much like home as possible. At home Kinley still eats meals while watching her favorite cartoon, Phineas and Ferb, since we still are trying to make mealtimes fun and enjoyable for her. We set up a portable DVD player and played Phineas and Ferb for most of her meals on vacation. This is what the set-up looked like...

Lucky for us Kinley still fits in her Bumbo, because it worked out well. Kinley ate really good for most meals. Yea!! (That makes vacation a lot less stressful for Mommy and Daddy.) As far as sleeping arrangements go, Kinley sleeps in her own room at home, so we tried to set up a little corner of the room for Kinley to sleep in where she would not be able to see Kevin or I. We thought that if she could see us she would never go to sleep and would just cry until one of us went to rescue her. Here is Kinley's sleeping corner...

We brought our pack-n-play from home as well as my "screen" (as it came to be called in it's previous function, which I am sure my co-workers might recognize). Anyway, it is a little hard to tell in this picture, but the screen is actually blocking Kinley's view of the rest of the room, so it was like she had her own little room within our room. That also worked out really well. Kinley slept great while on vacation. I don't know if it was all the fresh air, excitement, or both, but we actually had to wake Kinley up at 10:00 AM on the second day. Normally Kinley is awake between 7:30 AM and 8:00 AM.

There was so much to do at the resort. There was an indoor water park that we didn't make it to, but there was also 1 other indoor pool and 2 outdoor pools, and each of them had a baby pool nearby. One of the outdoor pools even had a water slide. There was a golf course, bowling ally, shops, playground, putt-putt course, picnic areas, marina, restaurants and more. We didn't have nearly enough time to do everything, oh well, I guess we will just have to go back soon. Here are some of the fun things we did get to do...

Kinley loved to splash and play with her new water toys in the baby pool. The water was only about 6 inches deep and there were little fountains all around the pool that Kinley would crawl into. (That is what's obstructing the view of Kinley in the 3rd pic.) She had a lot of fun in this pool, it was just her size.

Here Kinley is in one of the adult pools with her little water boat.

Grandpa pushing Kinley in her boat.

Just chillin with Daddy at the kiddie pool.

The first day Kinley wore her very own life jacket on the pontoon boat that we rented. Kinley was a little uncomfortable in the life jacket, but eventually was crawling all around the boat having a great time. She even ate dinner on the boat with all the adults.

The second day we rented a speed boat and borrowed a life jacket that Kinley was much more comfortable in since she could move around a little easier with it on. Kinley must have been really relaxed on the boat this time because she actually took a nap in Daddy's arms towards the end. Here are some pics of Kinley at the beginning of the boat ride before she fell asleep.

You will have to bear with me for the next 2 pics. I have them rotated before I upload them to the blog, but for some reason they go back to horizontal in the uploading process. So annoying. But, these pics show Kinley having a blast crawling up and down the hallway outside our room. She saw that long hallway and was off in a flash. She thought it was so funny when Mommy and Daddy as well as Grandma and Grandpa would chase her.

We were able to get a family pic in just before we headed home.

We also needed a pic of Kinley with Grandma and Grandpa, but just before this pic someone let it slip that we were heading home. Obviously Kinley was not too happy about leaving.

We had such a great time on vacation! The fact that Kinley did so well away from home and had so much fun made it that much better. Thanks Grandma and Grandpa for a great trip!!!

Kinley's First Haircut

2009-07-19T21:12:00.000-07:00

Just before we left for her first vacation, we took Kinley to get her first haircut. The only thing Kinley really needed was a little trim in the back since her hair had grown in a little uneven. We took her to Sheer Madness, which is just a few blocks away from our house. The salon was so cute and kid friendly! There were different cars for the kids to sit in while they got their hair cut and even tv's at each station so that they could watch their favorite shows. Kinley did pretty good at first, here she is checking out her purple wrangler...

And here she is when she realized what was about to happen.

Kinley's hair cutter was really flexible and this is how Kinley actually got her haircut for the first time...being held by mommy.

And now for the after pic. Kinley was happy as can be back in her purple wrangler as long as no one came near her with a pair of scissors. As you can see, not much of a change in looks from the front, but the back really does look a lot better all trimmed up.

A Couple Weeks Of Horrible Eating

2009-07-19T18:36:00.000-07:00

I have been so pre-occupied with the Letters for CDH project, Kinley's first haircut and Kinley's first vacation (pics to come later) that I got a little behind on her blog. Lets go back to the beginning of July.

For the first couple weeks in July Kinley had a dramatic drop in appetite. She had been eating so well, and then just stopped. Kevin and I chalked it up to teething at first, but when it continued Kevin took her in to the pediatrician's office for a second opinion, and to see how long Kinley could go on like this without more intervention by us. Dr. S. said he could not see any teeth coming in, nor did Kinley have an ear infection or anything else that might hinder her appetite. I wanted an x-ray, but Dr. S. listened to Kinley's chest and said he didn't hear any bowel sounds or anything that might indicate she re-herniated, so his recommendation was to hold off on the x-ray and try to save Kinley from the exposure at this time. He weighed Kinley and she had gained a little over a pound from her 1 year check up, so Dr. S. was OK with her weight at this time also. Kinley weighed in at 20 lbs. Kevin and Kinley left the appointment without an answer to her feeding troubles, but at least we ruled out re-herniation.

Kevin and I were really getting stressed out and frustrated during feeding times. We were actually having several conversations a day about poop and wet diapers. It pretty much consumed us for those couple of weeks.

When the OT came for her visit we explained what was going on and she thinks Kinley was protesting us taking her bottles away. A couple of weeks or so before Kinley stopped eating we decided that she was drinking so well out of her sippy cups that she didn't need bottles after her meals anymore. I was thrilled about this because what we had been doing was giving Kinley breakfast for 30 minutes and then a bottle for 30 minutes. Same thing for lunch and dinner, and then just a bottle for 30 minutes before bedtime. Getting rid of the bottles after meals would cut feeding time in half and give us more time to get out and do stuff. (That is how we had time to get all the summer fun in.)

Well, we have since compromised with Kinley and now she gets breakfast with a bottle of whole milk afterwards, lunch, dinner, then a bottle of Pediasure at bedtime and it seems to be working well for everyone.

Thank You!

2009-07-19T18:31:00.000-07:00

Kinley wanted me to tell everyone who sent in their blue envelopes THANK YOU!!

Kinley With Her Letters

2009-07-15T08:51:00.000-07:00

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?

2009-07-14T12:03:00.000-07:00

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

2009-07-06T07:58:00.000-07:00

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

2009-06-30T13:48:00.000-07:00

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

2009-06-21T21:29:00.001-07:00

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

2009-06-21T21:02:00.000-07:00

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

2009-06-19T14:08:00.000-07:00

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.

OT Visit at Children's Mercy

2009-06-17T12:05:00.001-07:00

This morning we had to wake Kinley up early so that we could get downtown to Children's Mercy for her OT appointment on time. It was actually really bad planning on mommy and daddy's part because we kept her up late last night for the Royals game and then got her up early this morning. I really don't know what we were thinking. Oh well, live and learn.

The reason Kinley had to see the OT at Children's Mercy was because they have the final say on whether or not to do a swallow study.

We made it to Kinley's appointment on time and soon realized that she still has a phobia of medical personnel. As soon as we wheeled her stroller into the treatment room Kinley started crying. She was not herself the whole appointment, she was really fussy and uncooperative. Whether that was from being back at the hospital, or her lack of sleep, or both I guess we won't know for sure. Kinley ate a couple of bites of graham crackers and applesauce for the OT and she took a couple of sips of water from her sippy cup, but that is all we could get her to do before she was done.

After evaluating Kinley, the OT recommended that we cancel the swallow study. Her reasoning was that Kinley will have to be able to take at least 15 swallows for the swallow study and if she is not able to do that then we basically wasted our chance since she will not be able to have another swallow study for another year. The reason she can't have another swallow study for so long is because the study involves a lot of radiation. Basically it is like having a continuous x-ray machine on her watching every swallow.

The reason we originally wanted a swallow study was to see if Kinley needs to have her liquids thickened anymore. The OT recommended that we try clinically weaning her off the thickener instead of doing the test now. To clinically wean means that Kevin and I will be in charge of watching Kinley's reaction to thinner liquids.

We had been using 1 packet of nectar thickener to 6 oz of milk and we are now going to use that same packet to 8 oz of milk so that it will be just a little thinner. Kevin and I will be watching for any signs that Kinley is not tolerating the thinner liquids such as coughing, breathing heavier during feedings, or refusing the bottle. Worst case scenario is that Kinley may get a cold or infection in her lungs from aspirating some of the liquid. (Aspiration is when liquid goes into the lungs instead of the stomach.) This is the time to clinically wean since it is summer. You would not want to clinically wean in the winter because of cold and flu season, plus it would be hard to tell if the thinner liquids caused the infection/cold or if it was just the regular common cold or flu.

We were a little hesitant about clinically weaning because we were not sure we would be able to tell if Kinley was having any problems on the thinner liquids, but we felt better that the OT at Children's Mercy thought we would be just fine. They are usually just as cautious as the special care clinic, so if they were alright with it that made us feel better. Plus, we have already been giving Kinley unthickened milk in her sippy cups and she has done just fine with that. If we can prevent Kinley from having to go through another swallow study and thin her liquids that would be awesome! I was pleasantly surprised that the OT thought clinically weaning was the best course of action for Kinley.

I was also surprised to hear the OT say that we have been "babying" Kinley too much with regard to her meals. Kevin and I have still been warming Kinley's bottles before we give them to her. I guess it was just habit to warm her bottles when feeding her fortified breastmilk and we just carried that through when we switched to formula and most recently to whole milk. We have also been making sure that all the food on Kinley's highchair tray is bite size for her. The OT said we should start giving Kinley her bottles cooler and giving her bigger pieces of food so she has to work to make them bite size for her. It was very refreshing to be at Children's Mercy and hear that we should forgo the swallow study in favor of clinically weaning and push Kinley a little harder at mealtimes even if it meant that her intake may decrease a little initially.

Kinley's First Royals Game

2009-06-17T12:04:00.001-07:00

Last night we got to take Kinley to her first Royals game! It was T-Shirt Tuesday and even Kinley got a t-shirt. We went with Grandpa and Grandma Melcher and Kinley had a great time checking out the new K. (So did mommy and daddy for that matter.) Kinley did great and just people watched as we walked around the stadium before the game. She did pretty well during the game too. We found out the hard way that Kinley prefers her own seat about 4 innings into the game though. Kinley even cheered a couple of times which is huge since she has not been making much noise at all lately. We gave Kinley her night time bottle as we watched the game from our seats. We brought a bottle of Pediasure since it doesn't have to be refrigerated before opening and a packet of thickener so that we could just mix it and give it to her without much fuss. Kinley had other plans. Kinley totally refused the Pediasure, so I went on a search of the ballpark for some whole milk. It actually wasn't that hard, I guessed that the kid's snack bar would carry whole milk and the usher confirmed it for me. Luckily we packed an extra bottle and packet of thickener, so it was not a big deal. Kinley ended up taking her last bottle pretty well considering all the distractions that come from being fed away from home. We didn't stay for the whole game, but Kinley stayed awake well past her bedtime and didn't even fall asleep in the car on the way home. She must have been too excited still. She did fall asleep shortly after getting into her nice familiar crib. What a fun night out as a family.

one size fits all t-shirt?

Kinley And Her New Toys

2009-06-08T11:41:00.002-07:00

I have to make a disclaimer at the beginning of this post. I have not been able to get pics of Kinley playing with all her new birthday toys, so please don't be offended if you don't see a pic with your gift to Kinley. Trust me, Kinley has enjoyed playing with all her new toys!!

1 Year Special Care Clinic Visit

2009-06-08T11:41:00.001-07:00

We were on the fence about going back to the special care clinic (Kinley hasn't been there since December), but we finally decided to go ahead and schedule a 1 year appointment for June 4th. Kinley was actually supposed to have an OT visit as well, but due to scheduling difficulties between the special care clinic and the OT department, I was never able to get corresponding appointments, so we decided to forgo the OT appointment since Kinley sees an OT every other week at our house anyway. I think what I was hoping to get from this appointment was confirmation that Kinley is doing really well and does not need to be a patient of the special care clinic anymore. Well, lets just say that was not the opinion of the special care clinic.

Every visit to the special care clinic starts out in the weight room where nurses check Kinley's oxygen saturation, blood pressure, weight, length and head circumference. Since Kinley just had her pediatrician visit earlier that week, she pretty much flipped out as soon as one of the nurses touched her. I tried to explain that she didn't have to get any shots at this appointment, but I don't think Kinley was listening to me. She screamed the whole time!

After we were done in the weight room we headed to our exam room where Kinley finally calmed down as she played with Kevin and I and the large mirror in the room. The quiet did not last long though, as soon as the nurse practitioner came into the room the screaming started again.

Now, Kinley's appointment was back on June 4th and I haven't posted until now because, for one I have not had much time, and secondly I thought it was best to wait and calm down a bit before posting on this appointment. I know that Kiney is doing really well, Kevin and I see Kinley's progress on a daily basis. We know what she has had to overcome and as far as we are concerned she is a happy, healthy baby.

So, to make a long story short, instead of leaving the special care clinic on a good note with plans to discharge from their care we left with a screaming baby and recommendations for a hearing test, swallow study, ENT referral, OT visit at Children's Mercy (not just with our home OT) and a follow up visit with the special care clinic in August. Needless to say, this is not what I was hoping for. I do appreciate the fact that the special care clinic is thorough and I do believe they think they have her best interest in mind, but I just wish they could see her as a more "normal" child. Yes, she did have a VERY rough start, but for the most part she has overcome her initial problems and is doing almost all the things a normal 1 year old would be doing at this point. For instance, she is eating well and maintaining her growth curve, so her pediatrician said we could try her on regular whole milk and just do a weight check in a month to make sure all is well. The special care clinic would not even consider letting her do a trial on regular milk. They recommended that we give her Pediasure or whole milk with Carnation Instant Breakfast twice a day. I just think sometimes the opinions of the special care clinic are a little overkill. I do have to admit that I am on board with the hearing test and swallow study though.

Since special care clinic appointments take up a whole afternoon, we just let Kinley play and relax at home the rest of the day. She slept really well that night after all her fussing and screaming. Poor Kinley.

1 Year Pediatrician Visit

2009-06-08T11:40:00.000-07:00

On Monday, June 1st Kinley had her 1 year appointment with her pediatrician, Dr.S. Kinley did pretty good at her appointment considering that she got her 1 year shots and a toe stick to check for anemia and lead. Kinley gets shots at almost all of her visits to Dr.S. and I think she is starting to catch on. Kinley was a little nervous the whole time we were there and when she finally had to get the shots, well, she pretty much lost it at that point. Poor Kinley. At least she should be done with shots for a while now. Yay!!

As far as her growth goes, Kinley is hanging in there. Her weight was 18lbs and 9oz, which puts her in the 15% for weight. Length was 30.25 inches, or 90% and head circumference was 18.25 inches, or 75%. Kinley's length and head circumference percentile have stayed pretty much the same. Kinley's weight has slowly decreased in percentile, but Dr. S. assured us that this is normal for all kids at this age and overall Kinley is still doing really well.

Since Kinley is eating pretty well and her growth is appropriate for her age, Dr. S. said that he would be comfortable switching Kinley over to regular whole milk instead of formula. He said it was up to us, but he thinks Kinley does not really need Pediasure or whole milk fortified with Carnation Instant Breakfast either. He did recommend that we get a weight check in a month or so to make sure Kinley is holding onto her weight with the change in diet. I was very happy when he said this because it means that we can discontinue yet another "treatment". Now Kinley can drink regular whole milk just like most other kids her age. What a big girl!

Dr. S. was not overly concerned with the fact that Kinley can only say 1 word and she does not associate "dada" with Kevin. He said all kids are different and learn at different paces. He did think a hearing test was a good idea just to rule out the possibility of hearing problems though.

All and all it was a pretty typical appointment and Kinley does not need to have another appointment until she is 18 months old. It sounds like a long time away, but I am sure it will fly by.

OT Visit

2009-06-08T11:02:00.000-07:00

Kinley still sees her OT from Infants and Toddlers of Johnson County at our home every other Monday. Kinley continues to make great strides in her feeding, we just briefly touch on feeding at her appointments now. At her last visit earlier this week Kinley's feeding skills were at the 10-12 month old range. The exception to that is meats. Kinley still has difficulty chewing and swallowing meats. For the most part she will accept meat when offered to her, but she will just let it sit in her mouth for a long time before eventually chewing and swallowing it. The good news is that she does not cough or choke on the meats, she is just not in a big hurry to eat it once in her mouth. As far as self feeding skills, those are closer to a 6-10 month old, but that is mostly my fault. I have a fear of making a huge mess at mealtimes, so I tend to feed Kinley too much and not let her experiment with the spoon and fork as much as I should. Kinley is getting pretty good at her sippy cups now, and those used to get pretty messy, so maybe there is hope for me as far as letting Kinley feed herself more. Kinley seems to actually enjoy her sippy cups now, so we only give her flavored milk every once in a while as a treat, but for the most part she gets regular whole milk. As for what Kinley eats now, she still loves yogurt of any flavor, goldfish crackers, graham crackers with a little butter on them, spaghetti o's with meatballs, bananas, ritz crackers with easy cheese, strawberry fig newtons, sweet potato fries and vienna sausage. I try to get Kinley to eat veggies, but she is not a fan. She will eat mandarin oranges, peaches and pear chunks, but that is not really her favorite either. I guess I will just have to keep trying. If anyone has any good tips for getting Kinley to eat more fruits and veggies please let me know!

Ever since we started to focus more on gross and fine motor skills with OT, probably about 2 months ago, Kinley has been able to catch up and is now at the 10-12 month old range for both areas. That is pretty much right on track for her age! Great job Kinley, all your hard work has paid off.

When Kinley's motor skills started to take off, and her eating was well on track, we started to notice that Kinley is not talking as much as she used to be. Kinley used to say dada, but didn't really associate it with Kevin. We have not heard her say dada for a couple of weeks now, and she hasn't really picked up any new words. We have been working on communication skills for about a month now with little progress. We started off by trying to get her to say dada again or possibly even mama for once with no avail. So, we started to backtrack a little and went to encouraging gestures with daily routines or some songs like patty cake. Kinley will raise her hands when I say "up" and gesture to pick her up, she will wave, but not in context to anything, and she likes to take my hands and push them together to make a clapping noise, but that is about the extent of her communication skills at this point. At Kinley's last visit the OT watched her play and was a little concerned with how quietly she plays. Kinley's OT recommended that we have Kinley's hearing checked to rule out hearing loss as a reason for the delay in communication skills. Hopefully everything will be fine, but better to find out as soon as possible.

HAPPY 1ST BIRTHDAY KINLEY!!!

2009-05-25T17:56:00.000-07:00

I can't believe Kinley is already a year old! Believe it or not, even with all we have been through with her, this first year really did fly by.

Kevin and I are so proud of where Kinley is today. Looking back to a year ago we could have only imagined that she would be crawling, eating on her own, and an otherwise healthy, happy 1 year old little girl today. We just wanted to thank everyone who has supported us and prayed for Kinley this past year. We can't express how much it truly meant to us.

Kinley - You are an inspiration to us. We are so sorry you had to go though what you did, but you did it with flying colors. We have a feeling most everything you do will be with flying colors. You have made an impact on the lives of so many people already, especially your mom and dad. Every time we look at you we see a miracle. We can't wait to see what the next year brings for you.

Alright, now what everyone is waiting for...picture time!

Setting up for the party.

Mmmm desserts, the best part.

Kinley's cupcake is the little one in front. Three Women and an Oven (the bakery) did a great job with her cupcake, you can't really tell from the picture, but it had "fairy dust" sprinkled on top to make it sparkle. The other mini cakes are lemon, chocolate covered strawberry, and the pink one is champagne. They were delicious!!

The party started just after Kinley woke up from her nap. She is still a little shocked in this picture.

Kinley and Chase playing together for the first time. They played really well together after Kinley got used to sharing. As you can see, she wasn't too sure about it at first.

Just hanging out, playing with her friends in her room before the festivities began.

Happy Birthday to you, Happy Birthday to you...

Kinley's cupcake was a little top-heavy with the icing, I couldn't get it to stand up after taking the wrapper off.

This is what Kinley's tray looks like after a typical meal. There is milk everywhere because she likes to pour just as much on her tray as in her mouth and there is always some milk-soaked food left on the tray.

Present time!!

Kobi did a great job showing Kinley how to open her gifts.

OK, I give up on the formatting for the rest of this post. No matter what I try I can't get the spaces between paragraphs to show up when it posts. They are there in the draft, but don't transfer when I post. Frustrating, but at least it will get posted.

A big THANKS to my sister for practically planning the whole party. She was in charge of decorations, invitations, food, and all the little "extras" that made the party so special. Unfortunately, she was sick the day of the party and had to miss the whole thing. We were so sad she was not there, but the party was a huge success because of all her hard work planning the whole thing! Thanks Aunt Mary and get well soon!!

If you were wondering about Kinley's birthday attire, it was actually a gift from Great Aunt Jody for Christmas. It is a pink onesie with matching tutu. The onesie says "does my butt look big in this tutu". I thought it was cute for her birthday.

After Kinley's party we let her take a little nap, but after she woke up it was more birthday fun. We dressed Kinley up in one of her new "outfits" and took her, as well as 12 dozen mini cupcakes to the NICU at Children's Mercy Hospital. We were disappointed that Kinley could not even make it past security. Apparently kids are not allowed in the hospital unless they are the patient due to increased precautions regarding the swine flu. I stayed in the lobby with Kinley while Kevin when up to the NICU to deliver the cupcakes and a little note with a current picture of Kinley, so that everyone there could see how well she is doing just a year later. We thought it was an important part of Kinley's Birthday to take time and thank those who made it possible. Kevin even ran into Dr. W. while in the NICU and she came all the way down to the lobby just to see Kinley and catch up. It was great seeing her again.

Here is the new "outfit" Kinley wore to Children's Mercy. It is a pair of scrubs with Dr. Melcher embroidered on it. This "outfit" was also from Great Aunt Jody. I don't know where she finds this stuff! Too cute.

All and all, I would say a very successful and fun 1st Birthday for Kinley!!

Getting Excited For Her Birthday

2009-05-23T17:51:00.001-07:00

Look Who's Using a Sippy Cup!!

2009-05-17T17:55:00.000-07:00

It took a lot of patience, persistence, trying out different sippy cups, different liquids in the sippy cups and even different consistencies of those liquids, but I think we finally figured out how to get Kinley to drink from a sippy cup all by herself!!

You might be thinking "What is the tasty liquid that would entice Kinley to finally drink from her cup?" Well, it is banana flavored whole milk from the Shatto Milk Company. The Shatto Milk Company is a local dairy farm that does not use any growth hormones in their cows. It comes in glass bottles and is sold at local grocery stores such as Hen House and Hy-Vee as well as Whole Foods. It also comes in fun flavors such as strawberry, chocolate, orange (think dreamsicle popsicle), root beer (think root beer floats) and of course, Kinley's favorite...banana. Shatto milk was recommended by Kinley's OT and since whole milk is pretty thick already we don't even have to thicken it!

It's Kinley's Turn

2009-05-08T13:21:00.000-07:00

It seems like all of our friends have already taken their children to Deanna Rose Farmstead, the local petting zoo. We have been meaning to take Kinley there ever since the weather started getting nice again. Well, today was the day. It just so happened that Aunt Mary was going to be at Deanna Rose with her first grade class for a field trip, so we figured this was the perfect day to go. It stormed early in the morning, but by 10:30 am it cleared up and was a beautiful day to get out and see some animals. Here are the pics of Kinley at the petting zoo. (She didn't really seem to interested in the animals, but she did enjoy getting out of the house.)

And yes, Kinley got tons of compliments on her sunglasses while we were out.

No More Feeding Pump

2009-05-06T15:16:00.000-07:00

Kinley has not needed a tube feeding since December, but we kept the feeding pump and supplies around just in case, until now. I called Apria a couple of weeks ago to see if they could come pick up the pump, and they did a few days later. Then, this past Monday Kinley had her regularly scheduled visit with her OT from Infants and Toddlers of Johnson County and we donated the rest of her feeding pump supplies to them. Needless to say, Kinley's closet seems much larger now. It is so nice to have all that out of the way! We still have the apnea monitor for now, but just because I didn't want to deal with the respiratory department of Apria after I called the enteral department.

You would think this would be a cause for celebration around our house, but not so much. Apria needed to get authorization from the Special Care Clinic at Children's Mercy Hospital before they could take back the feeding pump. The Special Care Clinic gave the authorization, but then realized we had not been in for a visit since December. Kinley has been doing so well I didn't think it was necessary to bring her in for monthly visits during cold and flu season. After all, she still sees her pediatrician for regular check-ups. Lets just say that was not the opinion of the Special Care Clinic. I received a call from a nurse a couple of days ago and was told that we needed to schedule an appointment with them and the OT department if we still wanted to be considered patients of the clinic. I actually planned on scheduling an appointment around Kinley's 1st Birthday with the hopes that it might be her last, so I agreed. Then the nurse told me that Kinley's provider at the clinic would not be prescribing thickener for Kinley anymore, since we had not been seen for a while. I was told that if Kinley still needed thickener she would have to get her regular pediatrician to order it from Apria. Had I not just ordered thickener I would have been even more upset about this.

While I am very happy that the feeding pump is behind us, sometimes I think I should have just left well enough alone.

Kinley Update

2009-04-23T17:57:00.000-07:00

I thought it was about time for a "Kinley Update" since it has been a little while. For the most part it has been a fairly un-eventful month (not that I am complaining, we like un-eventful) so I am not sure how informative this update will be, but here we go.

On Monday Kinley had her regular OT visit. Kinley is still being seen by Infants and Toddlers of Johnson County every other Monday, but that may be changing soon. Ever since we started to add gross motor skills to our focus list, Kinley has been making leaps and bounds. I think I already posted that Kinley is pulling up on almost everything and can climb upstairs now, but she is also starting to cruise (take a few steps while holding on to something for support). She is also getting better at slowly lowering herself from the standing position as opposed to just plopping down. Jami, Kinley's OT, said that Kinley has made about 4 months worth of progress over the past couple of months on her gross motor skills. She is basically doing all the things a "normal" 10-12 month old should be doing. This is great news since Kinley is right in the middle of that range at just about 11 months!! As far as feedings go, Kinley is doing really well with her food, but she is still refusing to feed herself a bottle or drink from a cup. Jami said that as soon as Kinley learns to drink by herself she will most likely not qualify for service anymore. This is great news for Kinley, but we will be sad to see Jami go. I think maybe Kinley has caught on to the fact that if she starts to drink on her own Jami will not come by to visit anymore, so that is the reason she is refusing to drink on her own so badly. I can't say I blame her on that one.

Since Kinley is super mobile now, and getting into everything, Kevin and I had to come up with an idea to "Kinley-proof" an area of the house. When we bought our house 2 years ago we always planned to buy a dining room set, but never really got around to it. Once we started getting baby stuff it just seemed to end up in the empty dining room. Eventually when Kinley came home from the hospital the dining room housed a pack & play, swing, bouncy chair, and toys. It only made sense to us to turn that into a little playroom for Kinley. The only problem was that Kinley could crawl out and since our house has such an open floor plan the dining room only has 2 walls. It took a little searching, but Kevin and I found these baby gates that extend to 12 feet. We bought 2 and here is the result...a playroom for Kinley that is totally "Kinley-proof"!

Here is Kinley guarding the entrance to her room...password to enter please.

A view from above. Notice that Kobi got the password to enter correct, Mom and Dad were not so lucky.

We have been trying to get Kinley out and enjoy the nice weather lately. On Wednesday evening we took her to her first Tadpoles softball game. Below is a picture of Kinley with Aunt Kate. Aunt Kate was all dressed in her Tadpoles uniform ready to play and Kinley was all ready to cheer them on to victory. Unfortunately, the other team knew what they were up against and didn't even show. The Tadpoles won by forfeit. It was really nice to get out and see everyone though. When Kinley was in the hospital the Tadpoles put together an awesome assortment of gift cards for Kevin and I to help out with dinners, groceries, etc. It was such a great gift and it was so nice to finally be able to take Kinley out to a game so everyone could meet her in person finally.

Speaking of getting out in the nice weather...

And don't think we forgot to bring her very favorite toy outside with us.

Please Keep Sofie & Her Family In Your Thoughts

2009-04-16T08:35:00.000-07:00

Please keep Sofie and her family in your thoughts and prayers. She has reherniated for a third time and is back in the hospital waiting on another surgery. While Sofie is one tough little girl, extra prayers never hurt anyone.

Happy Easter!

2009-04-12T17:32:00.000-07:00

Here is Kinley's pic with the Easter Bunny. Yes, we did wait until the last minute possible to get her picture taken with the Easter Bunny, but better late than never, right?

And here are just a couple pics of Easter at our house today.

Not much else is new around here. Kinley is getting better and faster at crawling every day. More recently she has learned how to climb upstairs and pull-up on window sills and in her crib. She is really good at getting into anything except the toys that we bought for her. She really likes to get into Kobi's toys or electrical cords. It seems like Kinley is changing so much every day and even though she just made it a lot harder to watch her, she is doing so well and is such a happy baby. We are so proud of her!

Pics of Daddy and Kinley as Promised

2009-04-01T09:20:00.001-07:00

This pic was taken last week just before the KU game. I almost didn't post the pics because I am still in shock that we are out of the tourney, but Kinley looked so cute in her little Jayhawk outfit, complete with bow, that I just had to post them. Kevin looked pretty good in KU attire also! (Even though he is an alumni of K-State, he still cheers for KU basketball, who can blame him?)

Here is Kinley's reaction when we explained that KU lost and is out of the tourney. Poor Kinley, she was heartbroken!

Kinley and Mom Wearing Turquoise

2009-04-01T08:57:00.000-07:00

Here are a couple of pics of Kinley and I wearing our turquoise yesterday for CDH awareness day.

Mommy ready for a fun day (well actually night) at work.

A better pic of the turquoise.

Kevin was not left out of the fun either. He was wearing his turquoise ribbon, but someone had to take the pics. Next time we will get Kevin in the pics.

CDH AWARENESS

2009-03-31T17:42:00.000-07:00

My mom has been busy raising awareness for CDH all month. Her office chooses a charity each month to donate money to. Each person who donates money is then able to dress down on Fridays. My mom was able to convince her office to donate money to Breath of Hope this month in honor of CDH Awareness Day, March 31st. Thanks for all your help and support mom!

Here is the sign that was proudly displayed in her office

Here are the stickers that people wore when they dressed down

Here is my mom and her wonderful co-workers supporting CDH awareness

And this is a picture of my parents sporting their turquoise on CDH Awareness Day!

Surgery Follow-up Appt

2009-03-29T21:35:00.000-07:00

Last Thursday Kinley had a follow-up visit with Dr. S, the surgeon who preformed her repair surgery last June. The appointment went really well and was very short. Basically Dr. S just looked at Kinley's belly, listened to her lungs and said she looked great. Initially Kevin and I were told that Kinley would need another surgery when she was around a year old to fix the hernia that was created when they did her repair. (When they brought the intestines that were in Kinley's chest down to her abdomen there was not quite enough room, and they were only able to close the outer layers of skin. The innermost layers still need to be closed.) Dr. S said that the hernia did not seem to be bothering Kinley and there was not much of a bulge in that area, so he would rather wait another year to do that surgery. His reasoning was that then Kinley would be a year bigger and stronger, and that was just fine with Kevin and I. Since the appointment was short and sweet we were able to go upstairs and visit our friends from the NICU. We were also able to go across the street and visit Aunt Kate and our friends at the Hyatt.

I should mention that while Kinley was in the NICU at Children's Mercy, the Hyatt was our home away from home. It was so nice to be able to bring Kinley over in person and say thanks for everything they did for us while she was in the hospital. It really made our lives easier to know that we had a place to stay so close to Kinley during that difficult time.

Kinley's Reminder

2009-03-25T11:33:00.001-07:00

This is Kinley's way of reminding everyone that Tuesday, March 31st is CDH Awareness Day. Please wear your turquoise and spread the word about CDH. The more people are aware of CDH the better chance we have of finding a cause and a cure! As always, thanks in advance for your support!!

Worth Getting The Video Camera Out

2009-03-25T09:45:00.001-07:00

We have yet to post any video of Kinley, but this was worth changing that. Hope you enjoy!

A Belated Thanks

2009-03-24T19:43:00.000-07:00

I can't believe how fast time flies once you are a parent. The blood drive was 5 days ago and I haven't even posted to say thanks to everyone who came out to donate. So, please accept my belated "THANKS!". We ended up having 41 people try to donate. That exceeded our goal, so we were very excited about that. While not everyone who came out to donate was able to, we really appreciated the effort and it was so great to see everyone.

I wish I had not forgotten my camera, but luckily Jen did not forget hers. She forwarded a couple of the pics from Kinley and Sofie's first meeting. Thanks Jen!