To all friends and family:
This blog is intended to keep all of you posted on information, updates, and thoughts from the Turner family as we work to bring Karsie into this world. To all who have been supportive through prayer, kind words, and hugs we both want to say "Thank you" from the bottom of our hearts. This has been and will continue to be a very trying time for us and every act of love from you has given us inspiration and strength.
-Kevin, Michelle, & Karsie-
We have given Karsie an email account so when she is older she can read all of the support that was sent her way during this time. Feel free to write a note to her or a prayer for her. Write to her at karsiegene@gmail.com.
Karsie had a great time at the zoo today! She really enjoyed all the riding around in her stroller!
Sophie met a few of the animals today too... but we didn't make it over to the giraffes.
Karsie almost was eaten by this giant predatory bird... good thing we were able to grab her!
An updated family picture in the turtle/duck area... the last one we took here Karsie had just been discharged!
Karsie and her godmother... celebrating a fun trip to the zoo!
Tomorrow begins our slew of appointments starting with G.I. and then surgery. We may or may not have any news about upcoming events. We'll keep you posted.
1. Karsie still loves bath time... and Kevin found his knack as a hair stylist! 2. Karsie had her first trip to the local ice cream shop... she didn't partake... but she had fun none-the-less! 3. Karsie is doing very well at PT/OT this week. She is getting much better at holding her balance while sitting unassisted. She has also begun practice on hands and knees. The therapists really believe we will be able to teach her how to crawl... and we are pretty excited about that. She will hold herself up using her arms for a couple minutes... it is amazing how quickly she is getting these new skills!
4. Karsie loves to be outside now that it is warmer. She has these awesome shades... and she finds them amusing. She also loves to go for walks and play in the sunshine! We only have a precious few weeks of spring before the temperature goes above tolerable... so we are trying to take advantage of the great weather! 5. Week of appointments... we are heading into a week of lots of appointments... on Tuesday we will see GI, and Surgery (Dr. Saenz)... and then we still have the usual PT, OT and hopefully speech appointments (speech was put on hold, waiting for some paperwork).
Karsie has a new cry. It's called "Feed me now or I will keep screaming!" We're not used to this. The following is our list of things to check or do when Karsie cries. 1. Put her to sleep 2. Stand her up 3. Change her diaper 4. Sit her up 5. Clean out her nose 6. Give her a binky 7. Play with her. Now there's a new element that we have come across. The other day we were out to dinner with friends and she started to fuss. She was chewing on her fingers, sucking on anything she could get into her mouth. She started to chew on any toy we gave her. To any normal parent this is an obvious sign of hunger. Not to us. We started checking her omphalocele dressing, looking at her G-Tube site to make sure it wasn't hurting her, all of what's normal to us. All the while, Karsie was practically gnawing off her arm in hunger. Had she drawn a chart that said FEED ME and had a picture of an empty stomach we still might not have gotten it.
Nevertheless, we get it now. Since her condensing, she has been figuring it out just fine...it's her parents that need help.
Karsie is halfway through her big condensing this week. So far so good. However, the biggest increases are yet to come. In two days she went from getting 33 mL an hour all day to getting 45 mL an hour at 10 a.m., 2 p.m., and 6 p.m. Two days after that she was given 55 mL an hour at the same times. She ends each feeding when she reaches 110 mL. Therefore each increase takes her less time to get to 110. Today starts the big increases. She is just starting to get 80 mL an hour, which will take her about an hour and 20 minutes to complete a feeding. The hope is that she is able to handle this and get hungry so she starts to eat by mouth more. If all goes well, starting Monday she will be increased to 110 mL an hour, which is where we will stop for the time being. This is really important for her, so we're praying that she handles it. If not, we at least have made an increase and we will back off and give her a bit to get used to the new increases. But here's hoping...
Yesterday we were at physical therapy and they were working with Karsie on her trunk muscles. Right in the middle of working she got real fussy and wanted to stand. Michelle helped her stand up as the therapist was moving mats around and Karsie lifted her right leg and stepped forward toward the toys. She really liked the singing block stacker. She has since done it three or four more times...with aided help from her arms of course.
It was a warm day for her 8 month birthday. So we have outside pictures. She is 2/3 of a year old! However, we've only had her for 1/3 all to ourselves. It's been a good time. Karsie has been handling the first part of her condensed feeding wonderfully. It's been nice having her off the tube for a few hours at a time. Tomorrow we increase again to two hours on. The big jump doesn't happen until Monday, but each increase is a bit interesting. So far so good.
There were two reasons that we decided to call G.I. a little earlier than our appointment. First of all, Karsie's speech therapist (eating) wants her to be hungry for her to work with Karsie and this continuous feeding does not make Karsie hungry. Secondly, Karsie is moving...a lot. Today we actually found her under the rocking chair after approximately 30 seconds. It's pretty hard to have a moving child attached to a food bag, so we thought we'd call and see what could be done. G.I. gave us permission to start condensing...at our discretion (but for a week). Imagine that! Giving us some say in our daughter's health care! So we have made a plan for Karsie to condense her down to eating one hour on and two hours off by next Tuesday. So far so good. She is being fed for 2 1/2 hours and then gets a half hour break today. At night she is fed continuously. This should be interesting when it comes to eating by mouth now.
One year ago today we posted our first blog entitled "Introducing Karsie's Blog." We have since written hundreds more in honor of our daughter Ms. Karsie Gene, who has in our opinion the most miraculous story. For those who have not read Karsie's blog in the beginning we give you permission to forego spring cleaning in place. It's a pretty cool journey.
1. Appointments... Karse is now on the schedule for PT, OT and Speech! Our pediatrician wanted to wait until after she got her flu shot boosters... and the end of the flu season before sending her to all these appointments... and now that time has come... so Karsie will be going to 5-9 appointments a week! On top of all this... mom and dad will be doing the exercises with her at home too! She is going to be the workout queen!
2. Bug still loves bathtime... she loves to splash... and in her tub at home, she can use her feet to make some cool squawking noises... and this amuses her. She also loves to try to drink any water that runs down her face... or the water she can suck from the wash cloth!
3. There is Jaque the Peacock... and also Mortimer the Moose... and she loves them both! I think those huge eyes grab her attention!
4. Karsie LOVES to read books... she has a few cloth books and she will lay down with them and read them to us. She loves when we read to her... she loves turning pages... she loves looking at the pictures... she loves eating the pages. She has a couple pop-up books that fascinate her... and she plays peek-a-boo with the pop-up characters. I have been trying to get a video of her reading her books... but when she hears the camera turn on... she gets distracted... she also loves the camera!
5. She is standing... all day long... she just loves to stand up! When she has been sitting or laying down for a bit... she does this super cute little scoot and grunt thing... to tell us that she wants to stand up! She especially loves to watch herself stand in the mirror! She gets to excited to see herself standing!
Karsie had another doctor's appointment today. She weighed in at 14 lbs. 12 oz. Still good growth, but her spurt has slowed down as it does with most babies around the time they start becoming mobile and burning off the calories they consume. She measured in at 26 inches. She's right at/around the 50th percentile for length at her gestational age.
Karsie has also been given a slew of other appointments multiple times a week. She will be going to physical therapy and occupational therapy to work on her muscle building and working on feeding/eating. Hopefully this will strengthen her arms and help her improve her eating.
We're still alive. Promise. We've just had a busy week. Karsie has been keeping us quite busy.
While we have been just going day to day doing the normal baby thing, we are about to start back with appointments and checkups.
March 30th we have two appointments. One of those appointments is to meet with G.I. Right now we are maintaining the same feeding schedule we have been for a couple of months. However, we will most likely be starting to change her feedings and schedules this time. Karsie has been getting increasingly more mobile and she can't be dragging her bag around as she moves around. We also need to start getting her feeding on solids more often. The next appointment is with Dr. Saenz. We hope that we will have some information on upcoming surgeries as he will evaluate Karsie's growth and ability to handle the surgery.
April 8th we have an appointment with plastic surgery to talk about the tissue expanders, an appointment with neurology to follow up on her brain activity, and a "follow up" appointment with Children's Hospital to check her overall development. She will spend about 2 hours with various specialists to work with her and play with her to check on her development and milestones. This will be interesting to see how Karsie is doing and what obstacles we will need to work on next.
I meant to get this up last week... but Karsie has taken to scooting all over the place. In this situation... she had been playing in her gym for a few minutes... with her feet towards the kickboard (bottom) and her head at the mirror (top)... I went to grab her pears... and while I was in the kitchen, I saw her scooting around a bit... but then I came in and she was whining because she couldn't scoot any farther because she had run into the couch. I couldn't stop laughing. I have yet to catch the scooting on video... but I am trying!
The other big development is that Karsie has learned how to tolerate tummy time... she simply turns her head to the side and rests. This means that she is able to stay on her tummy for longer... but she isn't developing her arm muscles as well. We are encouraging her to go up on her arms... but we have a stubborn one who likes to fight us on this! We figure she will get there... she just likes to move at her own pace.
Despite the massive amounts of rain, changing Karsie's nap schedule/routine, and even though we know that she won't remember any of this, Karsie had a great time at Disneyland yesterday. And so did we.
The picture that everyone has to get at Disneyland.
Kevin and his mom had to get a pass right away just inside the park and it started POURING. I believe you people that read this blog that live outside of California would just call it "rain" but for us that live here we call it the end of the world as we know it as it fills with water.
Karsie's first official Disneyland ride: Snow White, which in Kevin's opinion is the scariest ride in the world, but we subjected Karsie to it and she seemed to enjoy it. Kevin did take the time to teach Karsie about how noncompliant the ride is with the basic elements of plot in literature. He told her that the entire ride is rising action as the witch seems to be the main character, and it abruptly ends with "And they lived happily ever after" - never even mentioning the prince or showing Snow White after the witch was introduced. Karsie is now informed.
Karsie outside of Snow White.
Our next ride was Pinnochio, which we have no picture. We then went on the carousel. Grandma Turner has a picture of Kevin and Aunt Mandy on a horse at Disneyland, so we had to get this picture with Karsie. Karsie and Kevin actually rode on a bench along side of a guide dog named Cecil. But afterward we got this picture.
Grandma and Karsie on the Disneyland carousel.
We decided the ratio of wait time to ride time is the worst on Peter Pan. However, it was in line of this ride that we discovered Karsie has cut two teeth!!! She also fell fast asleep.
Karsie and Daddy in line for Peter Pan
Karsie, Kevin, and Grandma Turner after Peter Pan.
Where it all started. About 8 years ago Kevin proposed on this very bridge to Michelle. Now there is an addition to the bridge picture.
Kevin, Michelle, and Karsie on the "Wishing Bridge."
Nana met up with us in the afternoon and we walked over to California Adventures. We went to "A Bug's Land." We thought that was fitting as we call her Bug. We also bought her a hat since her hat we brought did not have warmers for her ears.
Nana, Michelle, and Karsie on some kind of Bug ride.
After a long day, after Grandpa Carlos joined us, we left to go see Uncle Todd and Aunt Christine. It was a very fun day!
1. We might have to change Karsie's nickname from Bug to Scooter! She has learned the art of scooting. While laying on her back, she uses her little legs to propel her in the direction of her head. It is super funny to watch her try to get out of her play gym... or scoot all over the floor!
2. Karsie is quite the little chatterbox. She is getting more and more talkative. She talks to all her toys, to mom, the fan, dad, her feet, her food bag, anything in her line of site. She is especially talkative when she rides in her carseat. She has two toys that she tells all kinds of stories to!
3. We have been having some issues with Karsie's g-tube this week. It started leaking a little last week (meaning food would leak out through the hole in her tummy onto her skin). We always keep some gauze right there to absorb any possible leakage, but hardly ever have problems. So last week we changed the button (it was 3 months old and GROSS). The new one fit well but still leaked a little. We called the GI nurse and she instructed us to add another 1mL of water and then use an ointment to protect her skin. This has solved the leakage and Karsie's skin is thankful for the ointment!
4. Karsie doesn't like sweet potatoes. She gets the shivers with each bite. It is cute.
5. This morning... Karsie gave quite the toot... and then she laughed at it! When she is all grown up and reading this, I am sure it will be embarrassing... but I laughed SO hard when she laughed at her own toot. How hilarious is that!
Karsie went to the doctors again today to continue getting her RSV shots. This was number 2 of 3. When there she was weighed, looked over, and given the shot. Other than screaming (which was promptly finished when she was picked up) everything went well.
Weight: 14 lbs. 8 oz!!! - This prompted the doctor to say "Wow. She really has been catching up. I'm curious to see what she looks like on the growth charts." For her real age (7 months/1 week) she is in the 5th percentile. This doesn't seem like much but it is huge. She has NEVER been on the growth charts for her gestational age let alone her real age. For her gestational age (6 months on Monday) she is in the 25th percentile!!! She's catching up.
Other things to be happy about: Obviously from the video yesterday she has started to figure out her legs. Yesterday evening we were holding her up and bouncing her and she was able to stand on her legs with minimal support for a few seconds at a time. So exciting!
Karsie has also been doing better with tummy time on her new mat. She is learning how to move her hands under her to support herself and look around. Most kids get this much earlier, but we think she's doing well considering she hadn't been put on her belly until she was 5 months old.
Things to still work on: Eating. Karsie is definitely taking advantage of her G-Tube, but she is learning to eat solids. So far she only breast feeds about once a day and she eats solids two times a day. Even though she attempts the solids she sometimes has a meltdown and will not eat or eats very little. It's still a bit of a struggle.
Karsie has been quite fun lately. She is really developing a personality. We went to get our taxes done yesterday and she waited in the waiting room and in the actual room for over an hour and just chilled. (P.S. What the heck California???? You sure as heck better balance that budget this year with all those crazy taxes we're paying) One funny thing that happened - not really funny but amusing to us - was she started to really gag hard in the waiting room in front of a bunch of people. Karsie gags pretty good about once or twice a day where she gets secretions in her throat that bother her and she can't cough it out. To someone that doesn't know Kasie's situation that had to look scary. Karsie had a couple while she was there and the people just stared at her for the longest time. We got a kick out of just sitting there nonchalantly and patting her back fully knowing that Karsie was okay, just working stuff up. Surprisingly enough no one made a comment or asked if she needed help.
We were off by two days. On the 19th (last night) Pinky completed itself! The last part of the scab fell off and the omphalocele is now completely skin. As you can see the skin is still very fragile looking and there is healing left to do, but it's all skin now! It's so amazing to think that just 6-7 months ago this was all open and exposed. It's amazing what the human body can do.
1. On Wednesday, Karsie turned 7 months old! We continue to be amazed by her strength and growth... and we are having so much fun with her!
2. Karsie has a few faces she makes on a regular basis. This one is "judgmental face." We laugh super hard when she makes it because it looks like she is judging us... we try to get her to crack a smile and most often she won't... she is giving us practice for her teenage years!
3. Look at that mess! She tried to help feed herself and ended up with food all over her face, legs, hands, and all over Dad too! She ate over an ounce of rice cereal though! She loves her cereal!
4. Play time with Dad! She loves playing... she loves talking and especially singing songs. Her favorite songs are songs that incorporate her omphalocele... you know... the classics... "Head, Shoulders, Knees and Toes *Omphalocele*"
"Touch Your Toes to Tour Omphalocele"
"This is My Liver..."
5. Who ever heard of eating bananas from a spoon? Karsie prefers to eat her bananas like a big girl... so we stick them in this cool little mesh bag for her to gum and suck on! She likes to be able to hold her food and this is perfect because we don't have to worry about her getting a big chunk in her mouth!
Karsie is holding steady with her breathing. Last night she woke up 2 times and needed to be suctioned. One of the times Michelle gave her a breathing treatment and Tylenol. This morning her fever was gone (98.2*) and she woke up talking and giggling! She seems to be feeling better. We headed in for a follow up appointment with her pediatrician. He listened to her and watched her breath (looking to see how hard she was working to breath). He said she was more-or-less stable. This is decent news. He said to continue with albuterol breathing treatments every 4-6 hours and the steroid breathing treatment twice a day. He also wrote a prescription for the oral steroid in case she starts to seem a little worse. If things get worse we will go in for a follow up appointment whenever needed... otherwise we won't go in until next week when Karsie gets her second Synagis (RSV) shot.
We are really praying that all these medicines will help her feel better and breath better.
In other news... Karsie is 7 months old today! That doesn't hardly seem possible! Her personality is really developing and we are having so much fun with her. She is a really fairly happy girl... she whines more than cries these days... and she talks all the time! She is her mama's daughter! She talks to her toys and to us and to the side of the bed... she talks to anything she sees... and she has a lot to say! She has even started talking in her sleep! Last night (twice) when getting her breathing treatment, Karsie was asleep and she started talking to the nebulizer! We tried to get a video of it but it was too dark and we didn't want to wake her. I am hoping she will give a repeat performance today and we can capture it on video! She is now eating rice cereal, bananas and sweet potatoes... though she doesn't care as much for the sweet potatoes. We will be introducing pears next... just as soon as she is over this icky breathing mess. She can take a full ounce of rice cereal and enjoys it most. Karsie still hates tummy time... and gets downright mad when we force it on her. She however loves playing in her jumper... she doesn't jump but kind of spins in circles and chats with the attached toys. She still loves her play gym. She has gotten so strong that she can kick the kickboard out of the velcro. She pulls on her musical toys and makes them play or jingle. She has also become Houdini in her bed... we always put her to sleep with her head near the wall; each morning we find her in new positions. Often she is completely upside down or sideways. Karsie lights up our lives... we are continually amazed by her strength. We are so blessed by her!
Last night was a little rough. Karsie woke up in the middle of the night and was pretty congested. It took a little while to get her calmed down but she went back to sleep.
Today she still had a pretty runny nose but she seemed to be feeling okay. Then just a little while ago she got a bit fussy and we took her temperature. She was running a temp of about 101. We called the doctor and they told us to come in. The doctor said that the breathing is a little concerning as her wheezing is back so we were put back onto the medicine that Karsie had when she came back from the hospital. Hopefully this will clear everything up.
We have been down this road before and we hope the path is a little different this time as last time she had to go to the hospital. We'll see how it goes tonight but we're praying that Karsie's congestion clears up soon.
1. Pinky is so close. That last part of the scab is being real persistent.
2. Rice cereal still seems to be Karsie's food of choice, which makes sense. The flavor is probably as close to breast milk as all the foods we try.
3. Karsie is ever so slightly starting to stiffen her legs when put upright. She is still slow at it and not real strong, but it's coming.
4. Karsie has started to really talk. She's been working on her "M" sounds, which really sounds like "mama" if we didn't know she has no idea what she's saying. She also is working on her "B" sounds. She's still being stubborn with her "Omph" sounds which we're trying to get her first word to be "omphalocele." We'll see how that goes.
Things Karsie still needs help with:
1. Legs - while we see improvement, her legs are still pretty weak.
2. Neck - we also see huge improvements during tummy time. She is able to lift her head for a few minutes and even look around. Her endurance has improved a lot too, but it's still weak.
3. Cough - Karsie still has a lingering cough, which the doctors told us could happen after the hospitalization with RSV. She has one or two real good gags a day due to the phlegm being caught in her throat.
1. As many of you know Karsie was dedicated this past weekend. One thing we did not mention was a gift that Karsie's aunt Christine and uncle Todd gave her. For many years, when the little girls in Aunt Christine's family were dedicated or baptized, they were given a bracelet as a gift for the special occasion. They all still have theirs. The night before Karsie was dedicated she got her little bracelet and wore it the entire day.
2. Yesterday Kevin peeled off almost all of Karsie's scab on Pinky. What is left now is maybe as thick as a thin nail and as long your pinky fingernail. We're probably looking at another two days or so before we will be taking a picture of a completed Pinky. The human body is amazing isn't it?
3. Today Karsie ate like a champ. We have been giving Karsie little tastes of solid foods lately. All of which we are making here at home...even the upcoming food. Thank you food processor. She has been eating on a rotation of bananas, rice cereal, and sweet potatoes. Today was rice cereal. She downed about two table spoons without too much trouble. She has a tendency to get overwhelmed with the texture and gags, but she didn't do too bad today especially considering she ate a ton of food for her. Up next: pears.
4. This didn't happen this week, but when we were down in San Diego Karsie got to meet baby Matthew and Garrett for the first time. Matthew is another baby we have been praying for and, if you click on his button to the left of Karsie's blog you can see his story. He's a cute little thing. It was Matthew's birthday and Karsie was able to celebrate with Matthew and his family.
5. Karsie's talking has been getting much more developed. So much so that it has made quite a funny situation with her toys. She frequently talks to them. She coos and smacks and grunts at her toys. They, in turn, do nothing. So she talks a little louder. She gets to the point where she gets just frustrated enough that it's cute and she starts to scream at them. They have yet to respond to her.
Karsie had a great time at the zoo today! She really enjoyed all the riding around in her stroller!
Sophie met a few of the animals today too... but we didn't make it over to the giraffes.
Karsie almost was eaten by this giant predatory bird... good thing we were able to grab her!
An updated family picture in the turtle/duck area... the last one we took here Karsie had just been discharged!
Karsie and her godmother... celebrating a fun trip to the zoo!
