Karsie Gene

Merry Christmas

2011-12-25T22:18:00.000-08:00

Merry Christmas!

We hope you have had a lovely holiday and were able to spend time with loved ones.

October in a Nutshell

2011-11-13T08:36:00.001-08:00

October was a great month! Karsie loved seeing pumpkins and fall decorations everywhere. She carried little pumpkins around the house as often as she could get her hands on them!

We enjoyed multiple trips to the pumpkin patches with family as well.

At her October GI appointment, Karsie weighed 22 pounds- a full pound more than the September appointment! We have LOVED not having any leaking, and Karsie enjoys eating that really does satisfy her appetite! She is doing well with her eating. She loves eggs, apples, chicken (nuggets), milk, cheerios, fruit loops, fruit leather, crackers, anything cinnamon flavored, and salmon.

Her surgery post-op appointment went well also. She was given the green light to have tissue expanders placed whenever she is ready for that step. We are thinking that waiting for a few more month's growth might not be a bad idea. We will share when we do end up getting a surgery date.

Karsie had a fun Halloween. She dressed up as Minnie Mouse... and thought the dress-up part was amazing.

She enjoyed twirling in her skirt. We went to the fall celebration at our church and Karsie saw lots of her friends.

Have you ever seen a cuter mouse?

Home From Surgery

2011-09-26T15:06:00.001-07:00

Our lack of posting maybe tipped you off to the fact that we are home. Karsie did really well in the hospital once she started eating solids. Her energy and happy attitude came back rather quickly and she was discharged on Saturday. It was supposed to be Friday, but she had a short lived (1 hour), low grade fever... and her surgeon is a stickler for temps.

She is enjoying being out of the hospital... eating... and going for walks/rides to the nearby coffee shop!

And... she is really happy to be able to spend a little extra time with some new stuffie friends (from one of her favorite shows).

No Leaking

2011-09-21T17:19:00.000-07:00

Good News! We saw radiology today to see if Karsie's stomach was leaking from the newly placed sutures. If so, there would have been a major surgery done to fix that. It wasn't as simple as going in and putting in an extra stitch. Well, it looks like we don't have to cross that bridge because there wasn't any leaking. Whew. So now Karsie is just working on eating. She is able to eat ice and drink little sips of water for today. Dr. Saenz usually visits us REAL early in the morning while he does his rounds, so we should have a plan tomorrow morning on where we go from there.

Thank you for all your prayers!

Picture Time

2011-09-20T22:25:00.000-07:00

Got to take an outing when Sea World came to Children's Hospital for the sick kiddos. Karsie could only handle a little bit and then got pretty tired. She enjoyed the wagon mostly.

Not as scary as Santa, but still not too fun. This guy took an interest in Karsie and was good with her.

Mid-night and Morning Update

2011-09-20T02:06:00.000-07:00

Karsie is doing pretty well so far. Our goal is to keep her pain managed and help her heal the internal sutures as best she can. The nurses have been really helpful with that goal. She has been still and calm most of the time!

We had a diaper change yesterday afternoon, but it was dry. We were concerned since she is getting a good deal of IV fluid. The nurses let us know that the orders say that she has 12 hours to urinate before they will use a catheter. Midnight came, and I tried wiping her down with warm water... still nothing. So, around 1:30 she got a new dose of morphine and a catheter (in just long enough to help her eliminate). She did well, and half-way through said, "I go pee pee." We asked if she felt better, and she said, "I feel better." So, hopefully that was the trick to get her to keep going on her own. As of this morning, she still has had a dry diaper- so keep praying for pee.

She slept for about 12 hours last night (off and on), which is better than we had hoped for.

Dr. Saenz came in this morning and said everything looks pretty good. He is trying to be really conservative with her and hope those stitches hold, so she is still not allowed to eat/drink today. He expects to do the barium study tomorrow to check for leakage in her stomach. If that is good, she will get to have liquids. If not, then he will reassess and likely do a second surgery.

This turns out to be a fun day to be at the hospital- Sea World is bringing live penguins to the hospital, and Karsie gets to go see them in a fun little wagon! She is on restricted movement (really light play only), but she is allowed to go down for this special event. I am sure we will be posting pics of that later! In the mean time, Here is a pic of our little Bug

She's Out

2011-09-19T12:59:00.000-07:00

It only took an hour, but there are still some concerns. Dr. Saenz came in to do a consult with us after surgery and the first words out of his mouth were "Well, that was tricky." His face was not at all comforting, but it sounds like the surgery went well for what he did.

The basics: Karsie's g-tube created a sort of track (tunnel) from her skin to her stomach. The idea is to cut it out and sew up the stomach and the skin separately. The problem with that is that the sutures would rub each other and create a bigger problem.

The problem: Of course there's a problem. What's two years of ups and downs without one more thing to worry about. Dr. Saenz's concern is that he wasn't able to completely sew up the stomach. He thinks he got it for now, but with the swelling and post surgery issues, the integrity of the tissue isn't that great, which would then make a possible leak. We're going to do a contrast study tomorrow or the next day (barium most likely) to see if she is leaking from the inside. If not, our only concern is to get her eating again. If so, we're in for another surgery. This one would be much more invasive and scary. Pray for no leaking!

Other than that, the actual procedure went well. She is out and in recovery. The incision was small(ish) and isn't presenting any immediate problems. She's not yet awake, but she's holding bunny tight and her sats look good.

Thank you for all your thoughts and prayers!

She's In

2011-09-19T10:19:00.000-07:00

The anesthesiologist just took Karsie back at about 10am. We made it through registration and pre-op without any problems. Karsie got to play bubbles and watch TV while waiting for the surgeon to come talk to us. Dr. Saenz came in and is still feeling concerned with the amount of space he has to work with. He doesn't want the stomach incision to rub on the skin incision and cause problems. He expects surgery to last 1-2 hours. She did great going back into the OR, and got to watch Dora on the way.

Surgery Plan

2011-09-18T19:16:00.000-07:00

Here is the plan for tomorrow (Monday).

We check into the hospital at 7:30am. Karsie will have some surgery prep and lab work.

At about 9:30am Karsie will have surgery. The plan is for the surgeon to remove the track from the g-tube stoma.

We are not sure how long the surgery will actually take. It took about 1.5 hours to place the g-tube and do the fundoplication, so hopefully not much more than that. He did not anticipate her needing to go to the PICU after. However, he did think she would probably need to be in the hospital for a few days after.

We will do our best to keep things updated here. We appreciate all the thoughts and prayers you have been already offering up on our behalf. We are praying for a smooth surgery, quick recovery, rest, and peace for all of us.

SURGERY!

2011-09-15T19:05:00.000-07:00

While it's a necessary evil, it's still an evil. Karsie's button hole is not closing up. At all. So, the only option left really is surgery. Dr. Saenz will open her up at the omphalocele site, cut out the track between her stomach and her skin, and then sew them up separately (that's how we understand it). The hope is that she will eat enough to grow on her own.

Ugh! We're sick with worry but hopeful that everything will be fine. Please keep our Miss Karsie in your prayers on Monday morning.

A Plug and an Update

2011-08-29T19:26:00.001-07:00

This is probably just the second or third time we've used this blog for publicity, but since Kevin is the one we're publicizing, it may be okay.

During the past year, Kevin wrote a young adult book. Since he's a teacher, he has access to the opinions of middle schoolers. Long story short, he decided to write a book for that age, and it's now finished! At least, he's ready to share it. It's called The Magi.

Because it's so new, he's trying to generate a little buzz around it and obtain a small following so if and when it is published (either by a reputable publisher or on his own) there are people that know about it. So here's how you can help...assuming you haven't already:

1. Go to facebook (Kevin M. Turner) and become his friend.
2. "Like" THE MAGI SERIES (which is a page on his wall)
3. Go to the website www.kevinmturner.com and subscribe (everything's private) to get updates
4. (most importantly) If you know a young adult that would be interested in an adventure/fantasy book...or just likes to read, spread the word and have them check it out on the website. There will be writing samples up periodically.

To get an incentive to do all those things (which looks good for perspective agents), he is releasing chapters a little at a time based on how many people subscribe to the site.

We hope this isn't too out of line....

In Karsie news, she is having quite the up and down time. Her weight continues to maintain (at least it's not dropping) but she's not growing much. She is feeling much better but her gagging has come back. We think it's a result of the constipation setting off a spasm reaction.

We have an appointment soon w/ G.I. which will be scary as she hasn't grown and they said they'd put in an NG tube if she hadn't. However, we really think that they're very understanding and logical, so we have hopes that they will let her have another month. However, surgery is just around the corner, so she doesn't have too much time.

Until later...

Another Setback (slightly)

2011-08-25T18:22:00.000-07:00

Things have been going well for Karsie. Her eating was up, she was drinking milk. It looked like we were on our way to freedom. However, we think she has had a small bout of constipation (hope you weren't eating dinner) and has had a lot less desire to eat. We're hoping it goes away soon and she picks up her appetite again soon because we're nearing our GI appointment and she hasn't gotten back to her previous weight before the major leaking of the g-tube.

Today has been slightly better, but we still need much more than this.

MILK--It does a Karsie Good!

2011-08-18T16:51:00.001-07:00

So this is a risky thing--putting our recent success out into the universe. Hopefully everyone knocks on wood before reading.

For months and months, we have known that if Karsie drank milk the way she drinks water that she would grow like a weed. The problem was, she didn't like milk. RATS!

A few days ago, however, we decided to water down some milk and call it water, which it was...mostly. And she drank it! Since then, we have been slowly increasing the milk to water ratio, and she has taken to it (that is, once she realized that was her option for hydration). At the moment, we are at full volume milk with a few ice cubes in her cup. She likes her ice cubes. Go figure.

The good news about this is that once she gets used to drinking milk like this, we can add supplemental formula to it to give her more calories. We might be seeing the light at the end of the growing tunnel. One day we may have to explain to her why water is actually not white, but for now, she's drinking...and growing!

UPDATE

2011-08-11T20:11:00.000-07:00

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

2011-08-09T07:39:00.000-07:00

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

Happy Father's Day

2011-06-19T12:25:00.000-07:00

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

2011-06-13T18:37:00.000-07:00

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

2011-06-04T20:39:00.001-07:00

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 !!!

2011-05-14T17:52:00.000-07:00

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

2011-05-11T20:51:00.000-07:00

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

2011-05-05T18:07:00.000-07:00

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

2011-04-27T18:23:00.000-07:00

Support the March of Dimes: March for Babies!!

You can read about last year's walk here.

Spring Break and Easter

2011-04-24T21:29:00.000-07:00

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

2011-04-20T19:08:00.000-07:00

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

2011-04-14T19:52:00.000-07:00

Updates... and Dress-Up Day!

2011-04-03T11:44:00.001-07:00

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!

2011-03-23T19:24:00.000-07:00

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

2011-02-26T10:08:00.001-08:00

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

2011-02-14T18:48:00.000-08:00

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

2011-02-08T20:11:00.000-08:00

January Catch-Up

2011-02-06T09:14:00.000-08:00

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

2011-01-20T22:46:00.000-08:00

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!

2011-01-09T19:48:00.000-08:00

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

2010-12-29T21:21:00.001-08:00

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

2010-12-15T19:37:00.000-08:00

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

2010-12-01T18:54:00.000-08:00

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.

2010-11-30T16:49:00.000-08:00

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

2010-11-29T17:26:00.000-08:00

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

2010-11-28T16:39:00.000-08:00

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

2010-11-08T21:01:00.001-08:00

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

2010-11-01T21:10:00.000-07:00

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...

Time for a Post

2010-10-27T18:55:00.000-07:00

It's not that yesterday's news was bad news, it just wasn't what we wanted to hear. After months and months of dealing with trying to come to a close to Karsie's defect we have to wait more. Dr. Gossman came in and looked at Karsie's flanks. Karsie has grown a lot since Dr. Gossman saw her last, and she has a good front to work with, but the sides that the tissue expanders will go has not grown as much as would be ideal. Gossman measured the space between Karsie's hip bone and rib cage, where the expanders would go. If you measure yours it really isn't that much, maybe a few inches. Karsie's is about an inch and a half.

Gossman did say that the decision is negotiable, and it's possible to do it. However, the surgery and procedure is painful, and it's possible that if we started it now, the expanders would not really do anything anyway since there's not a lot of room for them to go. In other words, we might be putting Karsie through a lot of pain and not a lot of gain. She advised that we wait another 6 months and then reassess. We figure if it's negotiable now, then Karsie should be good to go in April.

An added bonus to the waiting is that we were able to schedule the next appointment during vacation. Also, the surgery is looking like it will happen the first week we are off for summer vacation.

We also had a feeding appointment. Karsie has just been a NO on eating. Everything else has been progressing at an amazing rate, but eating has not. In fact, Dr. Gossman, Karsie's plastic surgeon, is concerned with the lack of eating as well because as soon as Karsie gets her expanders, she will most likely have a setback in eating. With her not eating at all, it could spell a huge setback on her progress for many months to possibly years.

The good news with Karsie's eating is that she loves to taste food (and everything else for that matter), so it's not unthinkable that she could start eating more and more in a short period of time. What needs to happen is that she associates swallowing food with good feelings. That's what we are going to focus our attention on in the coming weeks and months. We've got until April.

Update 10/19

2010-10-19T22:00:00.001-07:00

After a week, not much has happened. We're still going about our business of working and raising a child.

Karsie has definitely kept us on our toes lately. She is walking everywhere. She probably walks about 90% of the time now. She stumbles here and there, but it is controlled even when she goes down and she gets right back up. It's hard to imagine there was a time we were really concerned with her legs and nerve connection. She can almost keep up with us now. Every day seems to be enormously better than the last.

She seems to be really piecing things together lately. She's starting to talk a little better now. She's been able to say words, but she's starting to make connections with the words. Yesterday she said her first sentence: "Hi Doggie." She was inside looking outside at the dogs through the sliding glass door.

A week from today we see Dr. Gossman, Karsie's plastic surgeon. We're hopeful some news of her next surgery will be available then. Maybe she'll say they don't need to use the expanders and we will only have to have one surgery. Lots to pray for then. Until next time...

For the Grandparents

2010-10-12T16:53:00.000-07:00

A Sick Week

2010-10-09T23:32:00.000-07:00

The Turner family has been plagued! Kevin has been pretty sick all week, and is just now starting to shake it. He has been banished to a room and only allowed to come out with a mask (we have a few leftover masks from the NICU that we saved during the swine flu saga). Michelle was put out of commission for a day today with a migraine - the first she has ever gotten, and it was a bad one. Karsie has thankfully gotten the least of the illnesses, and just has a runny nose and is teething. She goes through the day flip flopping between being happy and being real mellow. Both are good, but mellow is not her style.

As far as updates - everything still is going well. Karsie is starting to stand up on her own (with no help from furniture) and still walking. We're still looking forward to (in a bitter sweet way) the plastic surgeon's appointment in a couple of weeks. Karsie still isn't eating much, if at all. She enjoys playing with the food in her mouth, but she won't swallow.

We went apple picking today, and Karsie was pretty mellow with it. But we did get some cute pictures of her picking some apples. She really just wanted to be held today and look at the apples. Who wouldn't?

More Walking

2010-10-06T19:56:00.000-07:00

So Karsie decided that today was going to be the day she walked. A little over a week ago she took her first steps. Today she took many. Not yesterday mind you. Just today. As if she was like "Okay...I'm ready!" Enjoy...

Some Fall Pictures

2010-10-02T09:12:00.001-07:00

Update 9-29-10

2010-09-29T20:46:00.000-07:00

Tube Site - things are going well here. Karsie has not been bothered by is really since we changed her ointments. It still looks a slight bit red and irritated, but it's so much better looking than before. We have another week with the ointments and then we need to start putting on the medicine that kills the granulation tissue. That tissue is growing around the tube and needs to go away. We usually put the ointment on once a month or so, but that ointment exacerbates the problem we're trying to get rid of, so we have had to stop that, thus making her tissue grow.

Eating - Still an issue, but Karsie is starting to slowly explore food again. She likes eating junk food that's for sure. She really likes to taste the food and play with it in her mouth, but she won't swallow the food...at least most of the food. If it doesn't dissolve right away like cheese puffs, she spits it out.

Physical Therapy - Karsie has now graduated from physical therapy! She has met all of her milestones. She is still a little behind the curve, but not enough to worry about anything. She is starting to quickly move from crawling to walking. She is in the beginning stages of standing up on her own without support and, as you saw, take small steps. She has repeated her stepping since Sunday's post.

We are a month away from Karsie's plastic surgery appointment where we meet with the surgeon to discuss her future. We're pretty sure we'll have a date then, which is scary but necessary.

Karsie's First Steps

2010-09-26T22:44:00.000-07:00

We saw this coming, so we whipped out a camera and got her taking her first two steps!!! Good job Karsie!

New Dressing Supplies

2010-09-25T20:39:00.000-07:00

Hello? Yes, We're Here!

2010-09-22T20:29:00.001-07:00

It's good to be back, but it's also good to have our Mac back. We have slacked a little on the blog lately, but our extended "slack" this time was due to the computer needing to be worked on by the Mac doctors.

We'll start from a couple weeks ago and end today, which had Karsie going to G.I. Karsie and company went to Disneyland on USC game day. Hope that doesn't offend anyone. Especially as Karsie looks darn cute in USC clothes. She had a blast! Especially where we found places she could crawl and walk.
Since a while ago, Karsie has stopped eating pretty much altogether. She seems to have regressed to where she puts food into her mouth and then thrusts it out with her tongue. So we made an appointment for the food clinic in San Diego at the same time as the G.I. appointment.
Michelle and Karsie went down to San Diego with Great Grandma Koch and had to leave Kevin at home. There was lots of fun time with friends, family, and other special people who love Karsie.
So the appointments: The food clinic was awesome actually. The therapist seemed to know exactly where Karsie was developmentally - so she has seen this before. Basically, it seems that Karsie is keeping the food centralized in her mouth and then doesn't really want to swallow. We're all pretty much in agreement that when she had to go on antibiotics for her G-Tube and being off of Prilosec may have thrown her back to where she doesn't want to swallow. However, she has the capability. Otherwise she'd be drooling. The goal now is to "wake up" Karsie's side mouth sensors since she's only keeping the food in the center. So we got a ton of toys (all given to us by OT) to have Karsie play with/chew on in order to wake up those sensors and get her to move food around in her mouth. She either didn't ever move it around, or she unlearned it during the time she was not eating (including now) that started with the antibiotics and not being on Prilosec.
G.I. - Her G.I. appointment was today. Our goal was to go back on Prilosec (to keep her tummy feeling better, to keep the heightened acid off her skin when her site leaks, and she's been gagging more lately). Karsie saw a stoma nurse (looks at her site), the G.I. nurse, and the dietician. The stoma nurse put her on a whole new dressing regiment that we're very optimistic about. Karsie has been fairly miserable with her itchy tube site, and when the nurse put on the "stuff" she almost immediately felt better. We put on the cream, put on a powder that helps with the itching and dries it out, put on a water barrier that's a spray, and then put on a foam dressing, which is now taped down by nicer tape. We used to have mean tape that would make Karsie upset when it came off. She has not dug at her site hardly at all since we put it on. Karsie was put back on Prilosec, which we are very happy about. Also, we have increased her feeding by 60 mL a day. She also will be given about 30 mL of water between each feeding to keep her hydrated. She has been having less wet diapers lately.

Finally, Karsie did some good growing. She's now at 18 lbs. 11 oz. At this point in a toddler's growth, they grown on average of 9 grams per day. Karsie grew 17 per day since her last checkup. So she's doing some great catch up growth. Her length is almost 29 inches, which was also growth. The dietician was very happy. So were we.

Two for Tuesday (or Monday)

2010-09-13T20:47:00.000-07:00

Bath Time! How obvious is it that she kind of enjoys baths?

Uncle Todd's hair needs to be pet. It's just a must.

**Disclaimer... we have had dogs for years... so long before Karsie came along, we adopted a "close the door" policy in relation to non-essential rooms. So, please rest assured that Karsie isn't crawling into bathrooms unless well supervised.

Karsie's Walker

2010-09-08T21:22:00.000-07:00

A Clarification

2010-09-07T20:50:00.000-07:00

The last post may have been confusing, so here's a clarification. We got an appointment WITH plastic surgery...meaning the practice of. We did not get an appointment for the actual surgery, just a consult. Hopefully we will have a date for the surgery after our appointment in October.

Also, Aunt Mandy has been heard from and is alive and well. She wasn't actually home when the quake hit as she was on a little vacation. Karsie was able to see and "chat" with her a bit the next day. We even got to witness an aftershock live.

Quick Hits from the Week (9-4)

2010-09-04T11:56:00.001-07:00

-Karsie's site looks much better and she is feeling better. Although today she is digging at it a bit more. We think it's just from a pressure sore that opened up today. We're keeping an eye on it.

- Karsie's feeding is not going well at all. She has actually stopped trying all that much, and when she does try she thrusts her tongue out and it pushes out the food. It's like she's backtracked a bit. We are hoping this is just a phase, but it may be a sign that we need to start going back to therapy for her.

- Karsie's Aunt Mandy (Kevin's sister) is in Christchurch, New Zealand and is okay for the time being. Yesterday's earthquake was pretty scary, and we're still not too sure how it is there, but she's alive and we are all very happy about that. We're still praying hard for running water and anything else that is needed there. We'll put up an update when we hear more from her.

-We got an appointment for plastic surgery. It's in late October. We hope by then she will have grown enough to be ready for her tissue expanders. It's bitter sweet for us because we want her young enough so she doesn't remember much of it all, but it's surgery and terrifying for us.

Rash Decisions - and Cute Pictures

2010-08-28T21:16:00.000-07:00

Karsie seems to be doing a bit better, but she's still bothered by her rash. Doctor Suen called the other day to tell us that the culture grew bacteria, meaning there's stuff to kill. So Karsie has been on antibiotics for a few days. We're pretty sure when she leaks she is getting irritated from a higher acidic concentration because we took her off prilosec. So G.I. needs to decide if she needs to go on again. The rash itself is slightly bigger, but it is healing with the antibiotic cream we put on her. We hope it clears up soon so she feels better.

Developmentally, she's doing well. She's getting very quick at standing up. She can point to her ears when we ask her to, and tomorrow we're working on "nose." Eating is hit and miss. Some days she likes solids. Some days she likes puree. some days she likes nothing. Except chicken. She always likes chicken.

It's About That Time Again...

2010-08-24T20:22:00.001-07:00

Karsie had to go to the doctor's today. It isn't a big deal yet, but we're trying to keep on top of a rash that has emerged from her G-Tube site and has really started to bother her more and more each day.

We took Karsie in today to see Dr. Suen, and he prescribed some antibiotics to start while they run the cultures taken from her site to see what kind of infection she has. He's very suspicious of some kinds of bacteria that like to hang around the plastic of tubing like Karsie has. But until we've narrowed some things down he gave Karsie medicine to cover the bases to make sure things don't get worse.

It's hard to tell whether Karsie is scratching her site because she digs at it, or if it hurts her and she's reaching for the spot as a reflex to the pain. Either way, it's very uncomfortable for her. It might also just be a rash that has broken down, so we're also putting neosporin on it to heal that up. We hope this goes away soon so she feels better.

There is good news. Apparently Karsie has grown 3 inches in one week!!! Haha, not really. But her length is 29 inches and last week when she was measured, the nurse had her at 26. It was confirmed today that the nurse last week was an intern and had been measuring it from the wrong spot and not being very careful with her accuracy. Karsie also gained an ounce from last week.

Happy Un-Birthday!

2010-08-22T11:07:00.000-07:00

Today, August 22, is Karsie's due date... therefore, as a premie, this is her adjusted birthday! All things are measured against her due date for development until this time next year. And we think she is doing very well for an adjusted 1 year old!!

Update on Issues

2010-08-17T19:48:00.000-07:00

Eating and Drinking: This has actually been a good area lately. Karsie has been eating decently, but she has got the hang of drinking...or at least getting the liquid out of the sippy cup and liking it. She then either drinks it and chokes a bit or spits it out. But she likes to get the liquid into her mouth, which is an improvement. Also, even though she has trouble with coughing, she's getting better at doing that...just takes a while when she starts out getting more into her mouth at first.

Doctor Appointment: Karsie went in to get her one-year shots. She did very well. She hated them in the office, but she didn't have any side effects. She weighed in at 18 lbs. 4 oz, which is great growth even though they weigh her with her clothes on. The doctors were amazed at how well she has done. When Michelle was talking to the doctor, Karsie sprint crawled up to him and he got the biggest kick out of that.

Last Night: Ugh! We have never experienced having to get up in the middle of the night to clean up vomit, but we probably have something we do that most parents do not experience. Last night, we woke up to Karsie whimpering. We usually let her go, but this was a different whimper, so we got up to check it out. We found that during the night her medical port (where we put in medicine from a syringe) popped open and all of her stomach juices plus any food she was supposed to get during the night poured out all over the crib...all over her...all over her blankets....everywhere! And of course this stuff happens at 3 in the morning.

Update 8-14-10

2010-08-14T12:38:00.001-07:00

A little delay in the San Diego birthday pictures. We realized that we really don't have a lot of pictures as we were busy doing things. So if you have cute pictures send them our way so we can post them.

Karsie has been doing very well lately. We are completely onto Pediasure now and Karsie is doing very well with it. We're hoping it really helps with weight gain. Not that it is an accurate measurement, but she feels much heavier at times.

Karsie has also completely changed her eating desires.....again. A couple of weeks ago she was eating puree foods exclusively. She would eat a ton. Now, she will barely take a bite, but she'll wolf down solid food like chicken bits or crackers. We are hoping for more of a balance, but she doesn't seem to be listening.

A bit of good news: She had her first day of really good drinking the other day. We gave her some water and she drank it quickly. She got so good at it she took it from our hands and drank herself. For those of you who don't know she is behind on her eating habits and WAY behind on drinking. Since she's had a G-Tube, she's never had to drink. So we have been busy trying to introduce drinking to her and trying to have her associate drinking with positive feelings. She also coughs a lot when drinking like she doesn't quite close her windpipe. We're hoping she grows out of that soon, but when she took the sippy the other day she started off coughing a bit, but she got the hang of it after a while and wasn't coughing as much.

We're about to start work again this coming week. Kevin is full time and Michelle is job sharing with another teacher. So Karsie will go to Auntie Becky's for 2-3 times per week. We're so lucky to have people we trust watching her.

Our next step in Karsie's ultimate closure goal is coming up. We're going into G.I. for another appointment in September and we're going to try and schedule an appointment with Dr. Gossman (plastic surgery) during that time. Hopefully Karsie will be big enough to start expanding her stomach. We have decided that while compression wrapping is the less surgical route, it really doesn't do as well with G-Tube babies. We started trying to wrap Karsie's omphalocele a while ago and she leaked so much during that time. We may try again when she is not leaking, but we think we're ready to just subscribe to the tissue expanders. We hope to have some news on that front soon.

Til then...

Copy Cat

2010-08-10T22:11:00.000-07:00

Just a quick update in addition to the video:

Karsie is still doing very well. She is standing on everything and getting around pretty well.

Today was the first day since she has been born that there was a one step process to making her food. We have either had to pump and freeze, mix formula, mix formula and thaw breast milk, or thaw breast milk and add other stuff. Tonight she gets straight formula. Now to get her drinking...

Update 8-4-10

2010-08-04T23:28:00.000-07:00

Greetings from Bakersfield!

The Turner Family has been doing well since our last post. Michelle has been busy with her partner teacher getting their classroom ready. They are team teaching at another school in the district, so Michelle has had to move all of her supplies to a different school. Kevin gets to play Mr. Mom during that time.

It has taken us a while to get back into the swing of things not being on the road, but we're close to being there. Just in time for school to start and having to learn a whole new routine again.

Karsie has been doing quite well since her fussy stage. We're right in the thick of weaning her onto the Pediasure, and she's back and forth with handling it. Since our last post, we've given her the same dosage. We think she got stopped up a bit (well, we know she did) because of the new formula switch. Once she had a few days to cope, she was back to normal. She's been very content. Yesterday we changed the dosage again. We're giving her 75% formula to 25% breast milk. In a few days, we'll be to 100% and done with the breast milk probably for good unless she needs to go back or doesn't handle something along the way. Either way, it's been good to have her take the milk Michelle worked so hard getting, but it's a little sad to be done with it if that makes sense. On to the next.

Karsie had a fussy day today at times, and at times she was as happy as she's ever been. Her belly's a little distended, so we're pretty sure this is just the next round of reaction to the formula switch.

We should have some pictures up of our San Diego party soon. Just thought we'd put up an update for now.

Post Appointments/Pre Birthday Party

2010-07-30T22:53:00.000-07:00

Holy Moly! This post is finally being written. We have been on the verge of writing this every night for the past three of four nights. So sorry. We do have updates and news regarding her appointments, so unless we're interrupted again we will try and get it out.

First of all, the bad news is that Karsie lost weight. Kind of a lot. She weighed in at 16 lbs. 12 oz. That's about a half pound loss. Amazingly she's still on the charts, but barely. We think this is due to a couple of things. She has gotten much more active. She's pulling herself up and crawling all over the place. That probably is keeping her losing weight at a more rapid rate than she is taking in food. Also, we think that Michelle's breast milk is not giving her enough of what she needs for some reason.

The doctor has now prescribed Pediasure, which is a liquid formula that is cow's milk based but gives 50% more calories. We are in the process of weaning her off of the breast milk and onto the formula. We are pretty okay with this as it is milk based and hopefully will give her a boost. We also are getting to wean her off of Prilosec, which means that she will be on no more medicines other than a multivitamin. We also were referred to a feeding therapist to see how she is doing and how to help her improve her desire to eat and drink.

Since the appointment, Karsie has been a really good eater. She has been eating lots of food at one time and lots of different kinds. We're supposed to start getting her onto chunkier puree foods. She loves to put in the real solid foods to her mouth, but she doesn't swallow all of it. So we're back tracking a bit and getting her into eating manageable chunks in food she knows. The food therapist said Karsie is doing great and she has all the tools she needs, but she's just a bit behind, but behind at the same pace. In other words, there's not one element that is worse off than the rest; she's just eating at a 9 month or 10 month level (ish).

Today Karsie has been a bit fussy. We're hoping that it's just a one-day deal, but she acts like she's slightly under the weather. We've come to the conclusion that she's teething. She also has a fairly significant rash on her G-tube site. And to complete the trifecta of issues, we changed her mixture last night to 50% breast milk and 50% Pediasure. This means she could be having some digestion issues and gas buildup with the extra calories introduced. We hope she's feeling better for her party...

Hope we remembered everything. We'll put up another post if we did. Off to bed for us and hooray for finally getting this finished.

Back from Vacation

2010-07-26T13:17:00.000-07:00

Vacation was lots of fun. Karsie did amazingly well on her first vacation. Especially the 18 hours back in a one day drive we did from Wyoming to California.

Now that we're back, there's lots to do. We have a G.I. appointment to attend tomorrow. We're hoping that there has been some growth on just the breast milk. We're in an interesting situation as we are going to run out of breast milk in the next couple of weeks, so Karsie needs to be started on something. The hope is that we get the okay for cow's milk. That would make our lives a lot easier.

Karsie has been doing quite well on her development. She is a little chatterbox. She also enjoys volume - lots of it. There have been a few dinners that we've had to remove ourselves from because Karsie likes to squeal and talk very loudly. She also is crawling all over the place. She is still doing her little limp crawl, but it's much smoother now and she's using both legs to move (there was some concern that she was developing a preference, but she doesn't seem to be favoring any side). She is also pulling herself up more and more, which is a newer development. She is compensating quite well for her lack of abdominal muscles. She hasn't started to really cruise yet, but we think it's coming real soon. She kind of knows how to do it already, she just hasn't been on her feet on her own as much. But now that she's doing that, she's getting the hang of it quickly.

We're still trying to squeeze out as much of our summer break as we can. We're trying to make up for last summer. Until next time...

Grand Teton National Park

2010-07-24T10:09:00.000-07:00

We spent three days in Yellowstone and then left for Grand Teton. Karsie did amazingly well during the entire trip.

Hiking to Hidden Falls.

The amazingly beautiful Hidden Falls.

Resting in front of the falls.

We made it to Hidden Falls... after a short little hike up the base of one of the Tetons.

Nana and Grampa hiking down from Hidden Falls.

Planning the next hike and fishing trip.

Resting from the hike to the falls.

Practicing walking with Grampa.

Airplane!

A Wandering Garter Snake we met along the hike to Taggart Lake.

Enjoying the lake.

We all made it to Taggart Lake... so pretty with the Tetons in the background.

Grampa fishing Taggart Lake.

On the back side of a long hike to Taggart Lake.

Waiting for the sun to set and the beavers to come out (to no success).

Yellowstone

2010-07-21T21:33:00.000-07:00

Karsie and Daddy walking at West Thumb.

This pool is super deep and had some awesome colors...

...but this was our favorite of the gyser pools. Such a pretty color.

Birthday girl at Old Faithful.

Trying to avoid mosquitos on our evening wildlife search.

Hoping for lightning, but none showed up for us... though these clouds were a lovely relief.

We enjoyed lots of picnic lunches.

The Grand Canyon of Yellowstone was quite impressive.

Artist's Point... incredible view.

Karsie had so much fun and was super good about being in the car more than usual.

Amazing waterfalls all over the place.

Bison... EVERYWHERE!

Walking to the top of Mammoth Hot Springs

Enjoying the Mammoth Hot Springs

It is amazing how nature works!

Karsie's "B-EARTH" day Celebration

2010-07-17T23:19:00.000-07:00

Even the earth couldn't contain itself on Karsie's birthday and celebrated with us. Every 90 minutes.

Happy Birthday Karsie!

2010-07-17T15:56:00.000-07:00

Happy Birthday Karsie Gene! Today you are 1! We love you so very much and we are so blessed by your little life! You amaze us every day and we are thankful to be your parents!

Happy Birthday Bug!

Bryce Canyon and Salt Lake City

2010-07-14T07:46:00.000-07:00

We have been continuing on our journey... from Zion we headed north into Bryce Canyon and then onto Salt Lake City for the night.

We had previously mentioned the breast milk that is taking the journey with us... here is a shot of the cooler... minus a few bags! And so far, the dry ice has been doing it's job very well!

Kevin and Karsie at Bryce Canyon.

We did the amphitheater drive and stopped at all the overlooks. Bryce Point gave an amazing view of the whole canyon.

The indian name for Bryce Canyon means "red rocks, standing like men in a bowl-shaped canyon"... and that is exactly what it is!

Amazing waterfall against the red dirt.

The colors were just gorgeous.

Walking along the little river.

So, in case you haven't been, Temple Square in Salt Lake City is beautiful. There are fountains and flowers and amazingly perfect grass lawns. We took a little walking tour of the square and couldn't resist the amazing gardens for some pictures!

Karsie thought it was funny to sit beside the fountain!

She loved the flowers... and wanted to eat them.

Playing in the grass.

She didn't know what to make of the grass... kinda pokey and funny feeling!

"Mom, can I please eat these flowers?"

Leaving Las Vegas

2010-07-14T06:16:00.000-07:00

Our next stop was Zion National Park in southern Utah.

Karsie loves being able to crawl and move around... what a nice break before the drive ahead.

We arrived at Zion, already sweaty, but excited to explore.

We promptly found a creek and decided that it was time to play!

It was much cooler down by the water... and so pretty.

Karsie was toasty too... so she got her little toes wet (semi-against her will). Once she felt the cooler water she didn't seem to mind as much.

Clapping on the shuttle bus.

We loved walking by the Virgin River down to the gateway to the Narrows... and if we had more time and the right shoes, we would have walked into the Narrows some.

Karsie loves riding along wherever we go. She loved all the green on this walk.

Zion is full of AMAZING scenery... like this massive rock wall that weeps.

On the walk back... getting a little tired.

On the shuttle back... really super tired!

On our way to Bryce!

Vacation Volume I - "108*"

2010-07-13T06:54:00.000-07:00

In case "108*" is a bit confusing, let us enlighten you. It was the temperature in Las Vegas when we passed through and stayed for the night. Yuck!

Our first stop was Las Vegas. Since it was a weekday (Sundays are weekdays to the hotel businesses) hotels were cheap, so we treated ourselves to the MGM Grand. It was okay. Not great. We are a day behind on posting, so we'll get yesterday's up tomorrow or tonight. This was a picture taken on our way out to get dry ice on our way out of Vegas. Why dry ice? Breast milk. We are trying to keep 45 bags of breast milk frozen for two weeks. Well, it's 45 minus 3 each day.
Can you tell Kevin had on a carrier backpack for Karsie in 108 degree weather? We decided to take a walk to the Bellagio for a buffet (one that we would not end up getting) from our hotel, which ended up being quite the ordeal. They're doing construction on new condos on the strip and that caused us to go up and down and up and down stairs and escalators for many blocks. Not fun when you're carrying a 20 lb child (okay, more like 18.5 or so).

Kevin got Karsie out of the carrier and went to the garden at the Bellagio to cool off. So sweet!
We placed Karsie in front of some flowers at the entrance of the garden. We got a few looks from staff, but all the guests (and a TON of other people on this trip so far) gawked over how cute she was. Yes, we're proud, biased parents.

After we saw that the line at the buffet was way too long and Karsie was way too tired to justify spending that much on food that we will not get to eat as we take care of a tired child, we settled on McDonald's at our hotel. But before we braved the heat again we found a chair and rug for Karsie to play on. We also enjoyed the air conditioner.

Look at that sweet little bum! She LOVED the rug. A Bug on a rug. Ha ha....ha ha..........ha........................ha. (And yes, we wiped her off before she had a chance to chew on hands or feet).

After her spa treatment... Karsie got ready for bed like a big girl. It was time for her first night on vacation. She did very well. In fact, she has done amazingly well sitting in a car for hours at a time. There are moments, but she's a good little trooper.

Up next.......Utah and some national parks!

Birthday Party #1

2010-07-10T16:07:00.000-07:00

That's right... we are those parents, the ones that have two parties for their kid. We had her first party today and despite the fact that she probably won't remember it... we all had a great time!

Cousin London and Uncle Matt playing above the pool.

Cousin Kelty playing with bubbles.

All the kiddos playing in the pool (Kelty, James and London).

Karsie got some cool toys... this is Emily... Karsie LOVES Emily (from the same family as Jaque the Peacock and Mortimer the Moose)!

Karsie and Kelty comparing notes on how to best play with this toy!

Cupcakes for the birthday girl!

Blowing out her candle.

Enjoying cake for the first time... not quite sure what to make of it!

She loved the texture in her hands though!

Olivia helped clean Karsie's mess.

Cake face!

Sharing with Murphy too!

Some Pictures from Today

2010-07-08T19:35:00.000-07:00

Who do you see in her (here)... Kevin or Michelle??

Karsie loves lasagna... but not the pasta balls... she makes sure none stay in her mouth.

This meal was promptly followed by...

...this bath.

She LOVES being in the water... be it bath or pool... she is our little fish... which bodes well for her since swimming is a non-contact sport and might suit her tummy well later in life!

San Diego Adventures

2010-07-07T09:27:00.000-07:00

Here are some favorites from our San Diego trip...

We had an awesome picnic with lots of friends... 4 babies, 4 dogs and many great friends. It was such a fun time to see some faces we haven't seen in a while and spend time catching up!

Karsie continues to LOVE being in water... she splashed half her bath water onto the floor... but she had a blast doing it.

After bath time, Karsie's curls really stand out!

We also spent some time with Karsie's Auntie Chrissy and Uncle Todd... Karsie loves them and said "Todd" and snuggled with Auntie Chrissy.

We had a lovely Fourth... and enjoyed the COOL San Diego weather!

The view from my parents balcony... at one point we saw 9 different fire works shows over the city! What a treat!

On our way out of town we had to stop at the zoo... Karsie did her impression of the lion for us.

And we enjoyed the time with Karsie's God-mamma.

It was a great trip... and we are excited to get back there pretty soon!

Breastmilk

2010-07-06T20:29:00.000-07:00

Well, we made it! We have successfully weaned Karsie off of all medicine (aside from vitamins and Prilosec) and we now are giving her only breast milk. We're kind of at a funny time because we're on a ticking clock with the breast milk. We have just enough frozen to get us to the next G.I. appointment. Remember all those bottles and bags of breast milk in the freezer we showed you a few months back? We've burned through most of those and are quickly getting down to nothing. The good news is that if all goes well and she gains weight on this diet (fingers crossed and lots of prayer) she might be put onto regular cow's milk. That would be good for two reasons:

1. It would save us a TON of time not having to keep on top of thawing breast milk and moving them from freezer to freezer.

2. It would keep her from having to go onto formula because once we get back to the appointment, we'll be out of milk and Michelle isn't producing enough to meet Karsie's needs at this point. It's a good thing she was so diligent at pumping for so long even after Karsie stopped getting it for a long time.

Gain weight little bug!

The Limper and Spinner

2010-07-05T06:54:00.000-07:00

Cruising and Limping

2010-07-02T14:47:00.001-07:00

(This picture has nothing to do with the blog entry, but it's awesome!)

We can't really title this entry "crawling" yet because Karsie has kind of a weird mode of transportation. She is definitely mobile. She can go pretty fast and is getting faster by the day, but it's hard to call it a true crawl.

She crawls with her right leg and arms, but she tucks her left leg under herself and it's pretty much a limp or dead leg. If she had neurological problems with her left leg it would make sense, but she just uses it to keep her omphalocele up off the ground while the right leg does all the work. We think she permanently tucks it under because she knows how to use that leg to get herself back into a sitting position so she doesn't want to risk using it and having it go somewhere too far that she can't get back into a sitting position. So she keeps that leg in sitting position while she crawls and her right leg does all the steering and moving. Therefore, we have a child that crawls with a limp.

She also has learned how to spin using her legs. At Nana and "Grampa's" house she has lots of hardwood floors and she has learned to spin around in circles. She learned it chasing their cocker spaniel around and around, but then she learned she can do that without the dog. Kinda fun!

Happy 4th to everyone if we don't get a post up between now and then.

Goodbye Napper!

2010-06-29T11:25:00.001-07:00

Oh the fun...

So, many of you may not know that we have been very blessed with a pretty happy, pretty compliant kid. Karsie has her days and moments like every baby, but for the most part, she's relatively easy...excluding medical stuff.

One of these areas that we have been blessed with good fortune is napping and nighttime sleep. Karsie pretty much knows when it's time to sleep and rolls over fairly quickly and goes to sleep. We put her down and there may be a fussy period for about 2-3 minutes, but she rolls to her side and goes down not too long thereafter.

All that is changing. She has learned now how to get up from laying down and get into sitting/crawling position. And now she does it ALWAYS! Last night we found her sleeping sitting up. We just put her down for a nap and before we even got out of the room she had...(ok...literally just got done checking on her because weird noises were coming from the room and this is what we saw...she's supposed to be napping)

Ok...before we had even gotten out of the room she had swiftly pulled herself up and was sitting up. Long story short...she has replaced her compliant napping attitude with sitting up and playing. And here we go...

Summer Days

2010-06-28T15:26:00.001-07:00

"Homemade chicken noodle... yummy!"

"This is my new trick... check me out!"

"Hi dadi!" (Translation: hi baby)

"Hurry up and fill my pool please! It's hot!"

"I love swimming with my doggy."

"No crowding, Olivia."

"Love my little pool!"

"No more pictures mom... I'm swimming!"

Reglan Be Gone!!

2010-06-27T13:02:00.001-07:00

We're done with Reglan! Last night, Karsie was given her final dose of Reglan as we have been weaning her off of it. Reglan is a medicine that is a bit controversial. While most doctors say that the benefits outweigh the risks, Reglan carries with it a link to brain issues. The purpose is to help Karsie with digestion. The GI doctors said that the bad effects on babies is very low, but Karsie was being given such a small amount that the risk is even lower. In fact, her dose wasn't ever changed since she was in the NICU. So Karsie has since gained 10 pounds and her dose has been the same, so it really has been a super long wean.

However, we really weaned her these past three weeks, and she has kept up her normal amount of pooping, so it looks like we're done for good. There is a small possibility that she may have to go on if she isn't digesting properly, i.e. not gaining weight as a result of digestion, but we're pretty sure she's done! Yay!

The Strong Willed Karsie Part II

2010-06-26T14:59:00.000-07:00

Setting: Our bedroom (more specifically: Karsie's bed)

Time: 3:30 AM

Parent Activity: Sleeping

Karsie's Activity: Chatting...chatting...chatting

Parent Activity #2: Get up and check on her

Karsie's Activity #2: Crawling on all fours...looks up...and laughs.

Parent Final Activity: Roll her over on her back and put in her binky

Karsie Final Activity: Continual chatting...possibly on her back, possibly in crawling position

The Strong Willed Karsie

2010-06-25T14:46:00.000-07:00

We almost forgot that parenting was a little more than helping a child survive. Okay, we didn't forget that, but we got a pretty good wake-up call yesterday. Kevin was feeding Karsie while she was in the high chair. She has developed a habit when she is finished that she throws food on the floor. After a few "no's" and explaining what we do with the food on the tray we had to move to phase two. After our ultimatum, she picked up a piece of meat, very defiantly looked at Kevin, and as she was looking at him she very slowly moved her hand over the edge of the tray and dropped more on the floor. After some "parenting" she learned the sign for "finished" and showed it today. And the sign wasn't throwing more food on the floor. Hopefully this will be the end of it (not holding our breath).

We remember praying for this about a year ago, so for our little "incidents" we are thankful.

Trip Down Memory Lane

2010-06-24T10:28:00.000-07:00

Since we are nearing Karsie's birthday, we thought we'd post a video we haven't posted before when Karsie was in the NICU alongside of a video we just took. It's amazing how far she's come!

Swim Lessons

2010-06-23T14:49:00.000-07:00

Here is what we have been doing each day around lunch time...

Getting into the pool... a little chilly at first, but not too bad.

Practicing floating and kicking.

Playing with the floaty toy.

Kicking and splashing... almost swimming!

And Karsie's favorite part... jumping off the side of the pool into mommy's arms!

Update 6-21-10

2010-06-21T18:45:00.000-07:00

Well, we'll admit it. We've been slacking on the blogging. We actually have things that are happening in our lives, but we have just been being lazy on the writing. So, we'll use this time to put everything down that has been happening and hope that we can keep up.

Let's start with the days right after our appointments, which seems to be when our slacking ways began. We got back into town and started up Karsie's weekly appointments here. The therapists were thrilled with Karsie's development, so much so that they graduated her from OT and basically graduated her from PT as well. She is still a bit behind with PT, but she is progressing at a fast rate, and is almost to normal. She's been pretty much finished with OT goals for a while, so it was time to move on. We go in once every other week or so to PT just to check in and see how Karsie is doing.

Speaking of how Karsie is doing, here's a list of things that we are working on now:

Sippy cup - do you think we're ready to try out sippy cups? Picture. She has been really wanting to drink lately and wants to do it herself, so we tried to find one that was easy for her to get liquid from, but requires her to suck just a little bit to get the hang of it. We may have gone a bit overboard.

Crawling - she is so close to really crawling. In fact, she's doing it...just backwards. She finds herself under our couch a lot. We basically just let her drag her omphalocele on the ground like a rag doll (it's not really that bad). She's close. She still is not good at getting from laying down to sitting up, but when she does get that, she's mobile and bye bye resting for mommy and daddy.

Swimming - swimming has been a bit of a story. We signed her up for swim lessons and were a bit misled. We thought we were gettting actual lessons where they teach the kids survival techniques and how to get dunked and rolling over and such. Not that they're going to make one-year olds Michael Phelps, but basically we get in the pool and have "free time" where we just put them into the water. But, we paid for them, so we go when we can. However, Karsie has a real cool trick that she does when swimming. She turns blue. She absolutely adores the water and loves to kick (the best one at it in our opinion) and likes playing in it, but toward the end of a half hour session, she loves to turn a new color. It took us a while to remember "Hey - her organs don't have any fat or muscle around them to insulate them." So, her body keeps them warm and neglects other non essentials, like her toes and fingers and lips. We asked the doctor and he said it should be fine as long as she's happy, which most of the time she is.

Big Girl Seat- A few weeks ago we transitioned Karsie into a big-girl car seat! She likes the new one so much more as she can see out the windows now and sits up tall instead of being scrunched into the infant carrier. Karsie loves riding in the car and has her own little "me time" back there. She plays and sings and talks happily... we are very thankful for her tolerance for the car seat as we are frequent travelers!

Eating - Karsie loves food, but not a lot of it. She loves meat! Chicken and ground turkey are heavenly. She also likes cheese (who doesn't?) and is starting to enjoy goldfish crackers. We have scheduled a little snack meal for her when it's not regular meal time.

We're right smack dab in the middle of her food and medicine change. We're giving her half breast milk half formula this week. We'll be at all breast milk in a couple of weeks. We're also down to just one dose of Reglan per day (we started with 4). We thought maybe we weaned too quickly as she didn't poop for 2 days. But then she did. A lot! And then she did it again. A lot! Her body is still producing her normal poopage so it has adjusted nicely. She still takes her milk/formula through her tube, but we are happy that it is moving towards breastmilk... maybe someday we will have a freezer again!

Grandma Turner came to visit Karsie this weekend. We had a fun time with her. Karsie loves her grandparents!

Belly Sleeper- over the past few days/nights, we have often found Karsie sleeping almost on her belly. She pulls her legs under her so her bum is in the air and then sleeps kind-of on her tummy. We are both belly sleepers, so this comes as no surprise that she would be comfortable on her belly... we just figured it would be after her belly was flat. She is learning to live with what she's got!

Right now, we have a sick little Bug. She got a little cold and she's slightly under the weather. It started as a cough, which kept us up all night two nights ago, and it has turned into nasty drainage party. She has been awarded some new steroids to help with the cough and some antibiotics because she has the beginnings of an ear infection. It has been an interesting couple of nights spent playing in the freezer to get the swelling of her vocal cords down. She likes to chat with the meat.

And by the way...it's hot here. This has nothing to do with Karsie, but it needs to be said. We're hot. And it hasn't even gotten as hot as it will. Hopefully we will be on vacation when the real horribleness starts.

11 Months Old

2010-06-17T20:37:00.000-07:00

We can hardly believe it!

San Diego Trip Recap

2010-06-16T11:04:00.000-07:00

These have been a long time coming...

Here are some highlights from our San Diego trip!

Not in SD, but worth posting anyway... eating Mac and Cheese with Great Grandma!
Practicing her mad skills!

Visiting with Karsie's Godparents in Old Town.

Karsie was getting sprayed by the fountain, so she spit right back at it!

Telling her Godmama a story.

"What, is something funny?"

On the bus at the zoo... seeing the sights.

Karsie took to this elephant (and he to her) and they had a bit of a conversation. She even waved bye-bye to him.

Getting spit on by Shamu.

Watching the La Jolla seals.

While we were visiting with some friends, Karsie took a ninja lesson.

We had the honor and privilege of watching Michelle's cousin graduate (no pic) and Karsie's Godmama get her PhD! Congrats to you both!!!

Appointments: Day 3 - G.I.

2010-06-09T18:44:00.000-07:00

All done! This was a good week. We went in with a list of questions, mostly just basic questions about the G-Tube and feeding, like rashes we're seeing and size of the button questions. But we also had questions about working to move her off the G-Tube. Here's a list of answers to questions we asked.

- We're moving her to complete breast milk!!! Yay! She will be supplemented with a small amount of calories but we're moving off of the formula. Our insurance will be happy about this. The wean will take us about a month.

- We're weaning her off of Reglan. Also a Yay!!! This will take about two to three weeks and she will hopefully be off forever. Assuming no problems arise.

- All of this is because her growth (minus head size) was awesome this month. She jumped quite a bit this time, especially her length. We think her body focuses on certain growth in intervals and this month was length. We put in a formal request that the next interval is head circumference.

- She's now allowed to be on her belly for crawling, within reason of course. We've been getting her out of crawl position when she slides down because the docs were a little nervous at first, but it's less fragile and scary now, so she can crawl using it (not that she's that far away from crawling now anyway).

- At one year, our next appointment, Karsie will be moved to regular milk and we will start to wean off of the G-Tube. This all assumes she makes growth the next couple of months and she starts to drink from a sippy cup. We haven't mentioned this yet, but we've given up on the bottle and are focused on the sippy cup. Karsie is starting to get the hang of it, so we hope by the time of our next appointment she will be drinking enough to stay hydrated so we can get off the tube if she is able to eat.

- Butter is our friend. The dietician said that all the foods she is eating are wonderful as they are high in proteins and fats. However, since the fats are important for brain growth we can feel free to put butter in anything we choose since she isn't showing any allergies to dairy. Don't you wish your dietician said the same thing?

Appointments: Day 2 - Neurology

2010-06-08T21:43:00.000-07:00

As far as wait time goes for specialists, neurology takes the cake. Granted we've only been there twice, but each time the crowds are small and so is the time we have to wait.

Good news: Karsie graduated! The neurologist checked her charts, her reflexes, her vision, hearing, did a few muscle tests, and called it. She's fine. Then he did her head circumference and was dumbfounded. He kept checking the charts and his measurement and said it didn't make sense that her head was small, but given the fact that he only took two measurements it could be anything. Her size is still within the curve for preemies, but it didn't take the same slope as the previous measurement. The good news is that we had G.I. appointments and their measurements that are still connected to the same system to compare.

He was able to see the curve of her growth and he said it follows a good plane. Granted, last month's measurement is the same as the measurement today, but overall it seems to be doing well and he said he was not concerned, especially since she's been meeting all her milestones. Long story short, it really doesn't mean much, but we'll watch it.

Then he said he's good to let her graduate from neurology! Wahoo! Not that these appointments have been anything stressful but it's good not to have one more to go to, and the fact that Karsie is good enough to discontinue neurological services. That's a long way from where we started.

Next up: G.I. We'll be pushing for feeding changes and such, so it'll be interesting. One more...

Appointments: Day 1 - Followup

2010-06-07T18:24:00.000-07:00

Today's appointment went well. Karsie worked for two hours with a nurse practitioner that took notes and played with her with all sorts of games that measured her development. You can see the paper notes here as Karsie is showing her balance while she plays with multiple toys.
She was tested on five areas: Receptive language, expressive language, cognitive development, fine motor skills and gross motor skills. Our favorite test was a problem solving test. The nurse practitioner pulled out a rubber duck and covered it with a plastic, see-through case with one opening at the front, not the top. The goal was for her to work on finding the opening and reaching in to get it. Karsie bypassed the opening and went for brute strength. She put her hands in the case and pulled up as hard as she could. It surprised the nurse practitioner and Karsie pulled it up enough to get the duck! Way to go. Matter over mind.
Karsie did very well. She was in the average to above average ranges for all five categories according to her gestational age. Even her gross motor skills which we know are weak based on her lack of abdominal muscles. However, she's in the low average range based on her birth age. Still pretty good. The only concern was her head circumference size. They measured her and she was below the curve. She's met her developmental milestones, which is the most important, but it is something we're going to worry about. Tomorrow we see neurology, so he'll be able to tell us more about that. Hopefully it's not a concern.
Good job Karsie. That was a long appointment.

Quick Hits from the Week

2010-06-06T09:17:00.000-07:00

- Karsie got a new car seat this week. It sits up, and she's happy.

- We're on our way to see our pastor speak his final sermon as our pastor. We will miss him.

- Summer began for Kevin and Michelle. We now get to spend all day with Karsie

- Nana and "Grampa" came up for a wedding and were able to see Karsie

- Karsie's cough came back this week, so we've had to sit in front of the freezer a couple of nights when it gets bad

- Karsie got to go into work with Kevin for his final two days of the year. She got lots of attention.

- Time to prepare for our appointment blitz this week. We start tomorrow.

Tastes Like Chicken!

2010-06-02T18:57:00.000-07:00

Add chicken to the list of foods Karsie is fond of. Tonight she had a good ol' fashion meal. Chicken, mashed potatoes, and avocado. Mmmmmmm. She wasn't fond of the spice in the mashed potatoes, but she always loves avocados and we decided to let her try chicken. Good choice. When she was finished with the avocados she downed quite a few pieces of chicken. If there's one food that we want her to love to get her weaned off of the G-Tube, it's meat! Good job Bug!

On another note. Today she had one of her happiest days ever! She was just a pleasant little thing all day long. She's usually in good humor, but today was a little more so.

Thank You Auntie Becky!

2010-06-01T20:55:00.001-07:00

We love these pictures that Karsie's Auntie Becky took on her last day taking care of her until next year. Sorry we stole them - we'll pay for rights later. It's always such a relief to know that your child is taken care of by someone you trust when you are not around. That was every day Michelle had to go into work. What was a hard thing (leaving Karsie) was made so much easier day after day knowing we were leaving her with someone who loves Karsie and protects her almost as much as her own child. Thank you Becky!

Michelle worked her last day of work today. Kevin's done on Friday and then starts a pretty crazy week of appointments and such. We've got a G.I. appointment, a neurology appointment, and a OT followup to do all in the span of three days. Should provide interesting information.

We may have a video up soon of Karsie either walking or crawling. She's really showing an interest and learning the mechanics, so it may be soon (by soon it could be months, but she's working on it). Good luck Karsie!

Cuddles and Smiles with Loved Ones

2010-05-31T12:01:00.000-07:00

Giveaway...

2010-05-30T14:47:00.000-07:00

Many of you have asked about the stickers we use for Karsie's monthly pictures.

They are an awesome set from Picky Sticky... and Michelle has a giveaway going on this week at her blog. Check it out and enter to win a set of Picky Sticky stickers!!

pageturnercrafts.blotspot.com

"She's So Cute!!!"

2010-05-27T22:35:00.000-07:00

Dear Karsie -

Your mother and I are very aware that parents like to brag about their kids. At some time in your life, we're guessing in about 10 years or so, you will come to the conclusion that we think you're cute because we "have to". We will tell you the stories about how you were such a cute baby and for some strange reason, you will think "Yeah, that's just what all parents think about their kids." So let me just cover my bases now by telling you in just the past day I've had numerous people exclaim how cute you are. Not just your parents saying it - random people coming up and gawking at your adorableness (not sure that's word).

So for the record, it's not just us. I will save this for that special day when you need to hear this.

-Daddy

More News

2010-05-26T21:59:00.000-07:00

First of all, Kevin was given a wonderful gift and surprise celebration for Karsie by his work staff. They all pitched in to get Karsie a little gift...and she LOVES it. Kevin put it together in the afternoon and she stayed in it for hours and was upset when she had to get out.

Karsie had a doctor's appointment today, which was unexpected. Like we said before, she has been coughing a lot and we've been needing to be attentive to it. A couple of nights ago we went into urgent care because of it. It was not really an emergency, but it was something we needed to have a doctor look at fairly soon and the offices were closed (how dare they?), so we took her in because she couldn't stop coughing. Turns out everything's fine and her lungs are great, but her vocal cords were swollen and were irritating her. She was fast tracked at urgent care and given a breathing treatment to help the swelling. So, no biggy, but we're still watching it. Darn croup.

Because of that, Karsie sounds funny. She's totally happy, but has that raspy voice like she's in the mafia or something. When she giggles it's hilarious! So back to the doctor's appointment...

We went in to check up on her today as we wanted Dr. Suen to look at her. Have we mentioned we love him? The son. Well, we like the dad too, but we see the son. Karsie loves Dr. Suen. She stares at him and makes him giggle at her. We think he likes her a lot...who wouldn't? She checked in at 17 lbs. 4 oz! Woohoo! She's getting close to that sitting up car seat. She may not have to wait until she's 21 after all. She also checked in at 27 inches long.

Other news: We had to change her G-Tube today, which was not fun at all. She has a pressure sore, which we and the doctors knew about, that was aggravated during the change and bled a bit. It wasn't a fun thing to see even though we were expecting it. It's not a fun sight to change the tube either. First of all, Karsie was full. We have to deflate the balloon keeping her tube in, take it out and quickly put the new one back in. During this transition, all the food in her stomach came out and we could see/feel her stomach deflate in that short amount of time. Gross! Anyhow, we got the new one back in and all is well in the land of Turner.

We'll say this for her: She keeps us on our toes!

Update

2010-05-24T21:18:00.000-07:00

We're alive and well. The good news for us is that we have been in a fairly rigid routine, which is good for Karsie. The bad news for our blog is that the routine really isn't news, so there's not much to report other than cute pictures and videos.

Karsie has been fighting a bit of a cough lately which comes and goes with the day. Today was the first day that we really noticed her having it all day, so we're watching her pretty close. However, she has strong enough muscles that have developed that she can cough a lot of the "gunk" out much easier than when we had to take her in.

We have a tentative appointment for plastic surgery in October. Seems so far away. In other words, nothing will happen surgically for her until at least then. Maybe if we can compression wrap her then her omphalocele will go in on its own and we will only have one surgery. Any of you know information on where to look or who to talk to about compression wrapping? Like what material was used, how tight to make it, what to expect, a doctor to call? We've been tightly wrapping it with her bandage and it isn't getting bigger, but it's definitely not going back in. Just curious.

We have a slew of appointments the first week in June. We get done with teaching early June, so it'll be nice to be able to be flexible with things. We see our doctors that we missed out on when we had to take Karsie in for her bloated stomach after Easter. Follow up where Children's Hospital measures her growth and strength, neurology, and G.I.

She continues to get cuter. She LOVES our dogs - animals in general actually. They play nicely together.

Until next time....

Kisses

2010-05-20T21:29:00.000-07:00

New Goals!

2010-05-18T10:00:00.000-07:00

Last week we talked about Karsie having new goals set for her by the occupational therapist. Today we got them along with the news that Karsie has almost reached her developmental age goals. Meaning Karsie is almost where she needs to be for her adjusted age. She's also doing things that are more advanced than her adjusted age.

Our goals are to get her to clap three times on her own, having her pick up and drop objects willfully, having her put objects into a container, reaching up to pull herself up (works with PT as well), and a couple others we can't remember at the time.

We're really blitzing the crawling at home because we can tell Karsie is getting frustrated with not being able to move where she wants to go. Arm strength is the key to our success, so we're having her spend lots of time on the tummy time mat and leaning her onto her hands.

Once we get to Karsie's developmental age goals, we think she will be done with OT. Amazingly that's kind of a bitter sweet thing for us. We are thrilled not to have to have two extra appointments a week, but we will be sad to say goodbye to the wonderful therapists as well as saying goodbye to the awesome help they have given Karsie. But for now, we must work on these goals.