Some Fall Pictures

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.

Karsie's First Steps

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

New Dressing Supplies

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.

Two for Tuesday (or Monday)

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

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.

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.

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.

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.

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!!

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.

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...

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...

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.

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.

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...

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).

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!