UPDATE

Thank you all for your patience w/ us the past few months. We've been busy...and gone! But we're back for now. We can't promise the frequent updates that we've given in the past since the end is near w/ Karsie's medical stuff, but we'll try to give information as we feel comfortable.

Quick hits from the beginning of the summer:

We took a trip to Yosemite and Karsie had a blast! She's a good little camper.

Karsie had to be taken into GI in San Diego unplanned due to an enormous amount of granulation tissue, which hasn't gone away....yet! Nothing came of it other than we tried to get rid of it by burning it. Didn't work.

Karsie got to spend a few weeks with her Nana and Papa. There were trips to the zoo, trips to Sea World, trips to the beach (which she hated). She had her second birthday party and a trip to disneyland (which wasn't in San Diego in case you were wondering).

Other medical news: here's a quick narrative of our journey.

Karsie has turned into an eater!!! Well, sort of. She has definitely stepped up her game. So, we were given permission to start weaning her off of her tube feeding with the hope to get down to nothing by the time surgery happens. During the weaning, we have had a bear of a time with her skin around the button. It has been broken down and covered in yeast for a lot of the summer. This has been due to leaking because her button has stretched her skin so much that her stomach liquids would pour out!

Since she was doing so well on her weaning, we decided to cut her feeding altogether and see how she did. She picked up her eating and did well. But then a few days ago her skin finally had enough and her leaking was as if there was nothing plugging her hole leading to her stomach. So, after permission from GI, we removed the button. That was an event! The idea is that the wound will heal on its own, but during the healing process, there's a gaping hole that spills everything that she eats until it closes. It didn't close right away, and it caused a trip to the ER to get Karsie something for pain because the stomach acid burned her broken down skin every time it leaked. Which was every time she took a drink. Which was always because she was so thirsty as everything was coming out. Poor girl! The good news was that it only lasted a day because it has started to close. Our only obstacle now is to get her back to eating like a champ because if she doesn't grow enough by the next GI appointment, they're going to put an NG tube in her nose for feedings. We're not sure how that's going to go with a 2 year old, and we'd rather not find out. But the good news is that she's been eating well. Grow Karsie, grow. No more button!

Back from Summer...News to follow

Thanks for being patient with us. We're public again and will share news asap.

Happy Father's Day

Some daddy-Karsie moments from the last few months...

Sliding at the zoo

March of Dimes- March for Babies

Hiking in the woods

Walking through the snow

Waiting to meet Pooh Bear

Giving flowers to Grandpa Gene

Wishing all the dads a great Father's Day.

And to Kevin, we love you and are so glad you are in our lives!

Love, Michelle and Karsie

Some Encouraging Signs

For those of you that have been able to get on, we apologize for any inconvenience with the blog. If you would do us a favor and post a comment on this blog and let us know you can read it. There are only about 30 or so that are signed up w/ us now, so hopefully since we haven't heard many issues yet (only a couple) that everyone's been able to get on.

As far as Karsie's progress goes, we're seeing some great signs. First of all, she continues to develop with speech and vocabulary. She is basically a normal kid at her age except her eating and her tummy.

Speaking of eating, we are pleased to see that she has really gotten the hang of it. So much so that we are starting our own make-shift process of weaning her off of the tube food. She was getting about 580 mL of food each day (400 at night and 180 during the day). It seemed to us that the days she didn't get her food at night (usually a mistake or she leaked a ton during the night) that she would be more interested in food during the day. So, we decided to try and slowly decrease her tube food and see what that would do (we did a bunch of research and talked with other parents before we tried).

The good news is that she was taking more to her food. The bad news has been that she still can't quite feed herself enough to sustain her weight. In fact, right now she's not really growing, but she's maintaining her weight. We've gotten down to 425 during the night and nothing during the day and she's still maintaining. Hopefully, she will begin to eat enough for her to grow soon.

The signs we're seeing, however, are positive. She likes lots of different types of food, and she's willing to try them. She is now shoving food into her mouth in bigger chunks. It used to be that she would eat little nibbles here and there, but lately (a few weeks worth) she's been putting handfuls in and working it well.

Hoping that this trend continues...

Memorial Day Vacation

Some of these pictures are a little out of order. We forgot our memory card, so we had to borrow pictures from others.

Uncle Dave made a massive fire to keep everyone warm. It snowed! A ton! Well, a ton for California wimps like us.
Daddy and Karsie go for a walk in the cold. It was beautiful.
Uncle Dave makes it "snow" during a down time. It actually snowed just fine on its own without the help, but it was fun to shake the snow from the tree limbs. Karsie enjoyed doing that later, but we didn't get a picture.
On our way down the mountain we took a picture of Karsie next to a Sequoia tree.
Our first day, we went for a walk and put Karsie in her Kelty carrier during nap time. She was out in less than 5 minutes.
Daddy and Nana and Karsie enjoy our only dry day.
Karsie LOVED the snow... that is when it stopped snowing long enough for us to enjoy it. That and when her parents were brave enough to step away from the fire long enough to take a picture.
Back on our first day, a Turner family picture.

GOING PRIVATE !!!

Friends and Family-

We've decided to make our blog private. We ask that if you would like to still follow our blog and you are friends or family that you email us at karsiegene@gmail.com. Give us your name and how you know us (in case we don't recognize your email address), and we'll give you access to the blog (assuming you check out). In order to have access you will need to have a blogger account, so if you want to follow and don't have an account, you'll need to make one. If you have problems with that, let us know in your email. We're so sorry to make this so inconvenient for our friends and family.

This post will be up for one more week before we go private, so if there's someone you know who has followed the blog and does not check it as regularly as in the past, please let them know.

Thanks.

K&M

Compression Wrapping

Since we've been saying we're doing compression wrapping, we thought we'd give some pictures of what it looks like. We took these pictures right before bed time (Nigh Nigh"t" time).

Karsie's Omphalocele might not be looking a whole lot smaller, but we notice that it's looser, and at times it does look smaller. Skinny little thing!

Right after we wrapped her....and tickled her. The wrap is a basic Ace bandage. We had to purchase tons of them because she keeps leaking on them and some don't hold up to the washing machine. We think we've found a set that works however.

Taking a couple jumps on the bed with her Medusa hair.

And the jumping continued well after dressing change.

You can get a good idea of how her organs are from this view. The bowels get pretty smashed with her bandage and sit fairly flat onto her with her compression wrap. However, her liver is a bit heftier and doesn't really have a place to go, so it protrudes out like you see here.

March for Babies Weekend

Here is a recap of our weekend and the March for Babies!

Getting started!

All the walkers getting started across the bridge... what a neat place to be.

Karsie actually walked a bit of the March for Babies this year! She had such a fun time!!!

When she got tuckered out she rode on Daddy's shoulders.

We took a detour at the end to see the blooming flowers. It was a great day for the walk.

On Sunday we headed to the zoo... Karsie had fun with Grandma going down the slide.

And watched the otters with Nana. It looks like Nana got a little smooch from this one. :)

March for Babies

Support the March of Dimes: March for Babies!!

You can read about last year's walk here.

Spring Break and Easter

Karsie has taken to drawing... a lot... all over everything. She took a pen and pad of paper into her ball pit/tent and did some art work.

We have been spending some time at the local "zoo" lately... and Karsie and friend Owen like to check out all the animals together.

Here they are showing us where to go next.

At the San Diego Zoo, Karsie enjoyed going on the slide! She LOVES to play at parks.

Checking out her Easter basket goodies from Nana and Papa. Thank you!

Egg dying... Karsie was a bit confused about how the whole thing worked.

She ended up wearing half the green dye...

Checking out the finished eggs... she enjoyed taking them out, smashing them on the table, and putting them back into the container. Very fun!

Still confused... we are always asking her to eat eggs... so here, she is trying them with the shell on!

Happy Easter!

He is risen!

He is risen, indeed!

Surgery Appointments

Karsie had her surgery appointment today. There's good news. There's also interesting news.

The good news: Karsie is now big enough to accept the tissue expanders, and unless something happens to the surgeon, she will have her surgery in June.

The interesting news: Something happened to the surgeon. She is pregnant! And she's due in July, which puts a wrench in pretty much all our plans. How dare she!

So, the plan is that she will have her surgery in October. The bad news with that is that it's almost four months longer to wait than our original plan. However, the good news with that is that she has four months to grow, and the surgeon still thinks Karsie will be ready for closure surgery around Christmas time or a little after. Plus, Dr. Gosman endorses compression wrapping. So, we're trying that again...for the third time. So far so good. The hope is that the wrapping will make the tissue expansion easier or (best case scenerio) not necessary.

So, here's our plan: October 6th we will be going in for a pre-op. Then, on the 13th we will go in for surgery to put in the expanders. Then, for one month, nothing will happen as Karsie recovers from surgery. Next, for about 6 weeks we will be expanding her tissue. Finally, she will have a few weeks of resting while the expanders are staying the same size, and then she will have a closure surgery. Depending on how everything is, she will either have it completely closed, which would be great, but probably unlikely. If they can't get all the muscle over and closed, she will have a patch put over to connect the two sides and later she will have another surgery to repair that, which will be just like a normal hernia surgery. Either way, we should be mostly done with all of this this time next year. The hernia surgery would probably be a couple years after the closure surgery.

So, here's to a clear summer for us. Congratulations Dr. Gosman!

I Love My Papa

Updates... and Dress-Up Day!

Updates... scroll down for the pics...

Last trip to the GI docs was a good (and short!) visit. Karsie weighed in at 21lbs and not quite 32 inches long. Her growth continues to be good on the Boost Kids 1.5. Her site is off and on yeasty, and we have come to accept that she will probably struggle with the yeast and leakage as long as she has the large belly. The wonderful NP asked if we were comfortable to just limp along with the leaking and yeast until we can get through surgery (hopefully early summer and Christmas)... and then with a flat tummy, the GI docs can really tackle the feeding issues. We are okay now that we know that is the plan.

In other health news, we seemed to miss the sick season that took out most our friends kids in the middle of winter... instead we have been plagued by sickness the last month. Karsie has had another bout of ear-infections/colds/coughs... and we have both caught some of it as well. Antibiotics have been our friends, and Karsie is the only one to have avoided a shot of penicillin (OUCH!). We haven't been able to get her last set of immunizations, as we have been waiting for a 10 day window of health before taking her in... she seems to get right to 9/10 day mark and then get sick again. She might be scheming all this just to avoid her shots.

We are gearing up for our spring break... and Karsie's appointment with the plastic surgeon. We are hoping that Dr. Saenz will be able to make it to that appointment as well (or at least to see him within the same week). We will also be doing the March of Dimes: March for Babies this month... and are happy to be supporting that cause! There will be another post later with how you can support them as well!

Karsie's hair is now long enough to put it into piggys!

SO SWEET!

Look at that precious girl!

Playing "I-Spy" with her toddler word-book.

Heading out with Mickey... just look at that cute piggy!!

"Look mom, I found all my 'bracelets'!"