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'!"

March Madness: 4 Videos!

Disclaimers on the first video: 1. The wet spot and dirty spots on the spreads are from changing Karsie's dressing on the bed. Also, she had just taken a bath, and her head made the wet spot....we do wash our sheets. It just gets dirty quickly and often. 2. At the end of the video, the items hanging on the wall that look like whips and chains are actually dog leashes. Just to be clear.

Haha. My daughter is a USC fan all the way!!! She hails the V for victory sign at the end of this video. Fight On, Karsie!!!

Teething Woes

For about 16 teeth or so, Karsie has done a fairly good job with teething. There have been a few times here and there that she has fussed, but those times were quickly fixed with a bobby (pacifier) or a little Tylenol. Not anymore! Karsie's molars are coming in, and the last three or four nights have been quite horrible. She is currently asleep at a time when she is usually at her most playful because she's so tired from last night. Why, then, are we so happy about last night?Because it was actually better than the previous nights.

Other than teething, Karsie has been growing like a normal child. She's starting to copy our sounds (and when all else fails she says "goggy"); she's been running around, trying to climb things even without her abdominal muscles (getting out of reclining chairs is interesting), and generally just being a fun little kid. We are having so much fun with her as she is starting to show quite the personality (sometimes that "personality" gets her into trouble though).

G-tube is looking wonderful lately, ever since we switched to the .8 cm button. It has been leaking slightly lately because we've been burning off her granulation tissue with silver nitrate. But it's been much better, and we're hoping to get everything under control when the tissue is burned off.

The one thing that she has stepped back on has been her eating and drinking. Granted, drinking has been decent, but she's again lost interest in eating. She still asks for food and puts it in her mouth, which is good, but she doesn't do it with any gusto. Ah, if only we had that problem.

Walking and Talking

Karsie is doing very well, especially in the area of talking. All of a sudden, she has exploded with words. She is copying pretty much everything we say now, and it sounds like the words we say. Before it was just mumbling, but she has started now to really mimic. She is saying small sentences and is just a blast to be around. Every day is something new.

Another area that is doing very well is her drinking. She is drinking lots of water each day and seems to enjoy it. Eating still is not great, but we have some good days here and there.

We've had quite the issue with her G-tube. She has been leaking everywhere lately, and we have been fighting yeast around her site, which then brings on her scratching and digging at it, which makes it even worse with bleeding and creating sores. The digging then makes it leak more which creates more yeast...and so on and so forth. However, we seem to have fixed it. She has been the owner of a 1 cm button for over a year now and we continued to ask for a .8 cm button, which would fit more snugly (in our opinion) thus making it harder to leak. The doctors said that the 1 cm button fit well, so we never changed it. Alas, we got a hold of a .8 cm button from a medical supply store, and have been using it for a week now. So far, leaking is WAY down! Take that.

Moral of the story...common sense sometimes outweighs everything else.

Karsie's Animal Scavenger Hunt

January Catch-Up

We finally worked out the picture problems... so here are some catch-up pics from January!

Lots of fun things going on for us to start off the new year.

Enjoying story time with Auntie Kelli and Uncle Dave. She LOVES guest readers!

Showing friend Owen the finer points of Yo Gabba Gabba!

Trying to figure out her new bathtime toys from Nana... They splash all on their own!

Loving bath time!!

We all went out to see Uncle Todd do an awesome job in the Cyclo-Cross race at Hart Park.

Cheering on Uncle Todd!!!

Snuggles with Nana after watching Uncle Todd. Time for a nap!

Rocking on her awesome Winnie-the-Pooh rocking bear... she LOVES to rock, and really pushes the limit of how far she can rock!

Reading with Grandma... learning all her animals! She now knows how to say "zebra" (bebeba), the noise for an elephant and lion! She can also point out all the animals on the back of the book!