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.

Some Pictures to Tide Over the Grandparents

A Little from Column A, A Little from Column B

Karsie has been experiencing quite a variety of food lately. She has pretty well learned the mechanics of eating/chewing even. In fact, one of the things that we have decided is that she likes the solid foods much better than the puree foods.

A while ago we asked a question on the blog about feeding Karsie and we said we would talk about our decision or something we were working on after all the suggestions you gave. Turns out, we didn't really decide anything. We did a trial run on not feeding her until she took something like a bottle (with a do or die time at 2:00 p.m.). In other words, we skipped her 10:00 a.m. feeding so she would get hungry enough to eat, which she does do when forced. Whatever she didn't take during that time we would absorb during her other feedings throughout the day. The first day was pretty good. She took the bottle and drank about 70% of what she would have to eat. However, the other days did not go so well. She didn't take the bottle at all and we had to cut our losses and feed her at 2:00 anyway so she got her fluids, which proved to be hard because we were giving her the whole day's worth of food in half the time, which made her uncomfortable. So, we shelved that idea.

Michelle has been drinking the special tea (this is being written by Kevin, so I don't know what it's called), eating oatmeal, hydrating herself, etc. in order to increase her milk supply. We're not really sure how it's going because Karsie does like to nurse and she usually empties Michelle, so we hope that it's working.

As far as where we go from here, it really looks like we're just going to have to wait until Karsie is on all solids with breast milk supplements and cut the G-Tube when she eats enough. Good news is that she LOVES solid food. She's been eating puffs like a pig for a while. She absolutely loves avocado and she can handle mangos. She is off and on with yogurt, but she can't get enough cheese (neither can her dad). She also has been introduced to other types of crackers that are kind of like the puffs, but they are bigger so she has to hold them and chew on them. She does very well with that and enjoys it. We're just going to have to wean her off the tube with G.I.'s help. There are other things we have yet to try, and we're still trying the sipee cup, but her interest is there and we may just have to be a little patient.

Karsie's Continual Academic Progress

Yes, you heard it here first: Our daughter is a genius! She has always done well on tests and she has passed yet another.

During her OT appointment today, which turned out to be a grueling hour mixed with physical therapy, she passed all of her goals they had set for her. This means that she is well on her way to the next phase where they will write out new goals for her. We're waiting for a call from Harvard any moment now...

Karsie's First Words

Karsie's first word was on Mother's Day! What was it?

"Dada"

Ironic little child.

A Milestone Made

We have now had Karsie home longer than she has been in the hospital - even counting the two returns we have had. We continue to be grateful for our little one.