Wednesday, December 29, 2010

December Memories

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

Hanging out with friends... in a box.

Teaching Uncle Todd a thing or two about the piano.

Family night-time zoo trip.

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

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

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

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

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

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

Wednesday, December 15, 2010

December Happenings


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

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

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

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

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

Wednesday, December 1, 2010

Development

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

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

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

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

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

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

Next up...Thanksgiving.

Tuesday, November 30, 2010

G.I.



video

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.

Monday, November 29, 2010

Swallow Study


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

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

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

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

Next up...G.I.

Sunday, November 28, 2010

No Post November

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

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

1. Karsie's terrible 2's coming early
2. Karsie's G.I. and swallow study
3. Update on development
4. Thanksgiving

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


KARSIE'S TERRIBLE 2'S

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

Monday, November 8, 2010

Sick Little Bug

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

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

Well, enough of the rambling.

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

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

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

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

Monday, November 1, 2010

Karsie Gets Ready for Spring Training

video

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...

Wednesday, October 27, 2010

Time for a Post

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.

Tuesday, October 19, 2010

Update 10/19

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...

Tuesday, October 12, 2010

Saturday, October 9, 2010

A Sick Week

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?

Wednesday, October 6, 2010

More Walking

video

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...

Saturday, October 2, 2010

Wednesday, September 29, 2010

Update 9-29-10

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.

Sunday, September 26, 2010

Karsie's First Steps

video

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

Saturday, September 25, 2010

Wednesday, September 22, 2010

Hello? Yes, We're Here!

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.

Monday, September 13, 2010

Two for Tuesday (or Monday)

video

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.

video

**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.

Wednesday, September 8, 2010

Tuesday, September 7, 2010

A Clarification

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.

Saturday, September 4, 2010

Quick Hits from the Week (9-4)

-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.

Saturday, August 28, 2010

Rash Decisions - and Cute Pictures




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.

Tuesday, August 24, 2010

It's About That Time Again...

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.

Sunday, August 22, 2010

Happy Un-Birthday!










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!!

Tuesday, August 17, 2010

Update on Issues

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.

Saturday, August 14, 2010

Update 8-14-10

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...

Tuesday, August 10, 2010

Copy Cat

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...
video

Wednesday, August 4, 2010

Update 8-4-10

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.

Friday, July 30, 2010

Post Appointments/Pre Birthday Party

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.

Monday, July 26, 2010

Back from Vacation

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...

Saturday, July 24, 2010

Grand Teton National Park

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).

Wednesday, July 21, 2010

Yellowstone

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!