Update 6-21-10

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

We can hardly believe it!

San Diego Trip Recap

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.

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

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

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

- 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!

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!

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

Giveaway...

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!!!"

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

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

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

New Goals!

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.

10 Months!!!

'Tis the Season to be Allergic

Karsie and Kevin are suffering from the Bakersfield allergy season. Both have been hacking and uncomfortable. If the weather wants to get rid of all of its dust particles and pollen, it will not be too soon.

It's also the time Bakersfield turns from nice weather to mildly uncomfortable to "Holy moly I want to die it's so hot" all in the matter of a couple of weeks. It has hit that mildly uncomfortable stage during the day but fairly nice at night. Soon we will be letting Karsie hang out with just her diaper.

Karsie has been doing lots of cute things lately. She has learned to wave. She has learned to say "Yeah" in sign language thanks to her awesome babysitter. She also has learned to give kisses. All of which are fairly inconsistent, but when she gets on a roll, she knows what to do.