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!

Update

Hello again.

We have had a hard time with getting pictures to the blog this month. Not because of a blog problem, but we have a space problem. Our computers are full. We've taken too many pictures!!! So needless to say, this blog won't have a picture.

Karsie turned 18 months this week! Where did the time go? We had a brief trip down memory lane the other day. We talked about physical therapy and occupational therepy and wondered what they would think of Karsie now. For their sake, we'll make a list of things she likes to do.

Physical: She loves to RUN. Everywhere. Climbing is coming, but with her big o' belly in the way it's hard for her to get up on things. But stairs or anything else she can get up, she'll do. She squats now and holds her squat when she wants to tinker with something on the ground, which is more that we can say for ourselves.

Occupational: She loves to play patty cake. We have her mark "it" with a T (for Turner) instead of B, and she does it. She loves to push the CD/DVD player button on Kevin's computer. Over...and over....and over. She can work our cell phones more than at a proficient level. In fact, she buys explicit music on Michelle's phone on the store. We're not even sure how she gets on. She loves to feed her baby and give her a bobby (that's a pacifier in Karsiespeak). She also loves to unravel the entire roll of toilet paper in record time.

Karsie just had her first ear infection. We thought it was strep at first, but it was a pretty nasty infection in her left ear. She didn't take a nap the entire day and only wanted to be held to fall asleep. Knowing what we know now, it makes sense that she didn't want to lay down. Poor thing hurt her ears like that. Tonight she has been much better.

So far, normal sick kid stuff. We haven't had any real excitement in a while, which we are praying stays that way (knocking on wood as we type).

Her favorite book so far is Goodnight Gorilla. On each page she can point to the gorilla, elephant, giraffe, the zoo keeper, and the lion. She can't say them, but she can point and calls the gorilla "Gogy." Well, it's time for bed. Hopefully she sleeps the night with her new ear medicine helping her.

Goodnight

Happy New Year!

We went back to the dates where we seemed to drop off the face of the blog. It all seems to revolve around Karsie walking. Phew! It's been quite the adventure lately. She really likes to find the kitchen utensils and pull them all out of the drawer.

Karsie's interest in food still is strong, but she still is not eating enough. We think we'll fight this battle until we're able to reason with her.

We have been fighting granulation tissue problems. For other kids with G-tubes, this is common, but frustrating. We're trying to cut down on leaking, but granulation tissue kinks the tube and makes more leaking. We've been given silver nitrate to burn off her tissue, but it's a fairly slow process.

In other news, Karsie is running everywhere. We're not sure she knows how to walk anymore. She just goes full speed wherever she goes. She also LOVES to read books. Most nights she pulls out books from her shelf and has us read them to her one by one until we've read them all. Then, she goes for round 2. She's really good at picking out the animals in the book. She also loves guest readers. We've had some visitors over the holiday, and Karsie has been very happy to have them read to her.

We are very happy to have Aunt Mandy back from New Zealand. Karsie is too...

December Memories

Karsie's amazing Christmas pics from Aunty Becky... Thank You!!!

Hanging out with friends... in a box.

Teaching Uncle Todd a thing or two about the piano.

Family night-time zoo trip.

Our daughter, who knows no stranger, was INSTANTLY in tears when she met Santa.

Christmas Eve... Karsie was checking to see if Santa was still around.

Opening Christmas presents... not sure where they will all go... but Karsie was thrilled. Her favorites are the play-tunnel-ball set and the rocking-Winnie-the-Pooh.

Aunty Mandy is back from New Zealand... she and Karsie had a wonderful time playing together!

Karsie's first balloon... and she LOVED it.

We hope you and your loved ones had a wonderful December!

December Happenings

December has been an adventure for us!

We started out the month getting Karsie's new 45 cal/oz food and trying to figure out a switch-over schedule for that. We have to get to 19oz of Boost 1.5 (new stuff) and get rid of the 24oz of Pediasure (old stuff)... giving her body time to adjust and us time to monitor how she is handling the change.

We had a trip to Disneyland... and we were lucky enough to be there for one of the Christmas Candlelight Services. If you ever get a chance to see that, it is AMAZING! It was like a Christmas Eve Church service, but at Disneyland! The lights were dimmed over Main Street and a couple hundred choir members walked out holding candles. It was narrated by Tom Skerritt. At one point, all of Central Plaza and Main Street was filled with thousands of voices singing "Silent Night." And the whole thing ended with the "Hallelujah Chorus." It was really spectacular.

This last Tuesday, Karsie got two shots (final HiB and Pneumococcal) and a check-up. Dr. Suen was pleased with her progress, and her g-tube button looked great compared to the last visit. Karsie has never had a reaciton to her shots, but this time she had a doozy! She had a 3-day fever! I called and checked in with the doctor's office when it was 102.6, and they said it was normal... but if the fever went over 104* or if she had other symptoms to call back. She never had other symptoms, and the fever stayed around 100* with tylenol/motrin. She was pretty mellow the whole time. We didn't have a lot of fussing or crying... just tired and hot!

Since then, her cough that had mostly gone away after Thanksgiving, has come back. We have been giving her more frequent breathing treatments and running the humidifier non-stop. Hopefully that will go away soon too!

Somewhere in the month, we have fit in some shopping, Christmas decorating, pictures, work, and time to see some friends! We are all looking forward to some time off for the holiday and lots of time with family and friends!

Development

Karsie has been a little bloomer lately. She's still a bit delayed in a few areas, but most areas she has caught up. In fact, the doctors told us that her speech is a tad bit advanced when you account for her gestational age and everything. So, we will take her development one segment at a time.

Gross Motor: Not a problem. She runs...everywhere...always. She squats; she dances; she drags heavy things around. It's amazing actually to think she didn't really move for five months and she's almost all caught up.

Fine Motor Skills: We're not really sure what the stages are for her age and situation, but she seems fairly normal. She points and picks stuff up. She even used a fork today for the first time. She stabbed the food, got it on the fork, and then picked it off with her fingers to put into her mouth. Seemed like an extra step to us, but whatever, she had fun. She's stacking blocks. She can do two and then attempts for a third. But her absolute favorite is to wait for Daddy to stack an awesome castle and then knock it down. She also can sign. She says "more" (which to her really means food), she says "please" and "thank you" and "all done." We think she said "poop" the other day, but we'll have to wait a couple more times to see if that's really what she's saying.

Speech: She's doing great according to the doc. She can say about 15-20 words, but she seems to be picking up her word development pretty quickly lately. She is also copying much more now. She used to copy the syllables that we would say, but now she's trying the sounds too. She can say her ABC's up to J by copying us. She has trouble with a few words, but she's getting it.

Eating: This is the area that's actually doing the best lately. Today was her best eating day since her drought. By far. She sat in her high chair and pounded lasagna. She really didn't pay attention to us. She focused on her food. Also, since she's learned the sign for "food" (which really she signs "more") she's more interested in food. Any time we have food, she wants some. Many times she just holds on to it, but many times she eats it. It's a huge improvement.

We're very happy and proud of our little Bug.

Next up...Thanksgiving.

G.I.

We went into G.I. with a few frustrations:

First of all, we were irritated that we couldn't get a handle on her leaking. Karsie has been leaking out of her G-tube for a while now, and sometimes it's quite a bit, and sometimes the entire Pacific Ocean comes out of her stomach hole.

Also, we have been frustrated that her site continues to become irritated and itchy for her. (irritated and frustrated at the situation, not the doctors).

So after a ton of consulting with each other, the plan is as follows:

1. We will try to kill her granulation tissue with Kenalog, a medicine/steroid that reduces tissue. Instead of just giving it to her for 7 days, we will give it to her for 14. There was serious consideration given to just burning it off, but they didn't do that. If the tissue doesn't go away, however, they will probably have to do that as the tissue is the main culprit of the leaking.

2. Also, to reduce the leaking, they have decided to reduce the amount of volume given to her. In order to do this, Karsie will have to be put on a higher calorie per oz. diet. Hopefully this will do a few things. We want it to reduce leaking, to help her get more hungry, and also to gain weight. She was about the same (a little more) than when we went in 2 months ago.

3. To reduce the rash, Michelle actually researched and suggested ILEX, which is a barrier paste to go onto the skin. We asked our omphalocele mom friends and after a bit of hunting found out about it, so we asked the doctors and they ok'd it. So far, it has been miraculous. In just a few days her skin looks almost completely normal.

Next up...development.

Swallow Study

We're splitting the second topic into two parts. The swallow study will be first, the G.I. appointment will be next.

On our last OT appointment in San Diego (yes, we have two OTs - but the Bakersfield OT has graduated her - the SD OT is more for eating) they recommended that Karsie do a swallow study. She just hasn't been eating at all and she spits pretty much everything out that she is given. It was very concerning to the OT that Karsie has been retching after many of her feedings. She thought that Karsie could develop an oral aversion by associating food with the uncomfort of the retch. So we went in.

Good news! Her not swallowing is not mechanical, it's a defense. Michelle and Carlos went in to the study and they had Karsie eat a bunch of barium-dipped food...yummy! Then they took a video X-ray and watched Karsie swallow. Karsie does block the swallow with her tongue at first and is very tentative about letting food get by. But she does swallow. In fact, she swallows more than we thought, it's just hard to see when all we see is the food coming back out. They ruled that she didn't have any problems, so that means that our next job is to create positive associations with the eating. We are continually told, it's not about how much she eats right now, it's just getting her to be happy with food and enjoy the sensations. The amount will come. So, we have been on that journey, and it's actually starting to show progress.

Lately, Karsie has been signing "more" for when she wants food. She absolutely loves putting food into her mouth, and we're noticing that she is swallowing a lot more. We think that has to do with us decreasing her total volume of formula and giving it to her more frequently instead of all at once. She has not retched nearly as much, and she is more willing to eat. We really think that she would do a decent job of eating if she were to be taken off formula and get hungry, but we wouldn't be able to hydrate her yet because she doesn't have the same skill at drinking.

Next up...G.I.

No Post November

Well...yes. We have been lazy. Just to get that out of the way.

We actually have a bit of stuff to talk about, but there always seems to be something that keeps us from posting when we sit down to do it. So, as not to overwhelm us, we will split out topics of discussion up. Here are our topics we will cover:

1. Karsie's terrible 2's coming early

2. Karsie's G.I. and swallow study

3. Update on development

4. Thanksgiving

Maybe that way we will get the posts done. Sorry.

KARSIE'S TERRIBLE 2'S

So, we have a two year old. Not in age, but in mentality. To be clear, she is still wonderful and she's really not that bad, but she has hit the stage. She loves throwing tantrums now at certain times when she doesn't get her way. They do not include throwing herself on the floor yet, but it does include fussing and stomping her feet while standing up. She also has started having an agenda for what she wants to do, and we all must cater to that agenda. Who ever said that the terrible 2's start at 2?

Sick Little Bug

It's official. October was the weakest month for us as far as posting goes. It is starting to follow a trend of few posts. That probably could be considered a good thing as most of this blog has been specifically for Karsie's medical dealings, so an absence from us usually means some kind of normal.

We'll have to start to think about what will happen to this blog when her stuff is all done - especially if there's a little sibling for Karsie on the way (no...there's no announcement today). Maybe we'll do some sort of duo-blog until Karsie's stuff is done.

Well, enough of the rambling.

Karsie caught a small bug. She's been hacking a bit for the last couple of days. It's a good hack though. Nothing like it was this time last year. She has enough strength to get a good hack in.

Daylight savings was quite the downer. We usually get a good night's rest in. This was our first experience with a kid. No one tells them they're supposed to sleep an extra hour! It's a good thing Karsie is dang cute in the mornings when she wakes up because we weren't feeling so cute when we were woken up.

Karsie has been fighting yeast on her G-Tube site. It's a pain to get rid of once it starts, but we've been managing. Our doctor found us a stoma nurse here in town, so we have regular appointments with her. She gave us some powder to put on Karsie's site. We've been putting it on for a week and it's been doing very well. We're constantly wrestling with her leaking at the site which creates the yeast if it sits on her skin for too long. So the powder is accompanied by many dressing changes throughout the day. We didn't even do that many when she was in the NICU.

Karsie has been RUNNING around everywhere lately. When she learned to walk, she also learned to run. It has been quite the time keeping up with her. At one point we had a few seconds before we had to react to something. Now, we have to glue ourselves to her to make sure she stays out of trouble. Which she does for the most part. For now...

Karsie Gets Ready for Spring Training

In response to the World Series being done (congrats Harold by the way), we thought we would post this.

From time to time, every 50-60 years or so, an athlete comes around and changes the landscape of competitive sports. It is now time to celebrate the next athlete of the century...and it is our daughter. Once this video ends, you will undoubtedly agree...