Little Miracle Baby

Fishy Watch

2011-08-17T14:08:00.001-05:00

We went with grandma to the doctors office. Carli was on fishy duty!

New puppy

2011-08-08T17:01:00.001-05:00

Carli has a new addition to her family. Think Honey likes Carli. It's almost like the she understands!

39.5 inches

2011-07-25T16:46:00.001-05:00

This kid is HUGE! We are estimating 6 foot tall. Any guesses as to when she will reach this??

Rolling on over!

2011-07-19T22:52:00.001-05:00

She is doing it!!!! Seriously and consistently. This kid is amazing! This summer has just been amazing for Carli. She has been working so hard with her nurse and I am so proud at what they have accomplished.

So, she is rolling several times a day from her belly to her back. Today she even went to opposite direction she's been going. Sooooooo stinkin proud!

Now I just have to figure out how to post the video from this blog app...

The photo is a long day of roll practice!

Last Day of School

2011-07-02T09:48:00.001-05:00

Carli has attended the Special Learning Center for therapies and daycare pretty much since she was out of the hospital. In Feb she started attending in a classroom with other children. She ha really benefited from the structured time. And of course she is a social butterfly like her mommy!!

This picture was taken the last day of summer school. :)

3 yr old and puberty?

2011-06-09T23:23:00.001-05:00

You read that right. We've been seeing a specialist about the possibility. For her third bday Carli got boobs! UHG! She was back at the specialist today and he feels pretty good about her lab work. It isn't uncommon for girls like Carli with brain injuries to begin going through early puberty. So far we are good. She's kind of hairy. Teenwolf I can deal with, periods...NO way!

Back Up and Running!

2011-06-08T08:45:00.001-05:00

Due to reasons for which I cannot discuss, my blog has been down for some time now. I am happy to say that we are back up and running!

I have so much to catch you up on about Carli!! Let's start with her iPad. With the help of amazing family and friends, we were able to purchase Carli an iPad. She uses it everyday to communicate her needs and wants. It is pretty exciting stuff to see! I'll get some pictures when she gets home from summer school with her nurse. SEE I told you, lots to catch up on!!

Understanding

2010-03-28T16:50:00.003-05:00

As a new mommy, you never really fully understand what it takes...until IT is needed.

Carli just got out of the hospital after a five day stay (third visit, second overnight this year). What started out as a UTI turned into a "we just don't know. It could be..." I sat in the hospital, mind you exactly two years from when she was first admitted, wondering what was wrong with my baby. It brought back so many memories. I actually felt bad for the resident who was taking care of us because I became an incredibly large ball of emotions and once even had to leave the room. What the resident saw as just a kid going through a normal sickness with everything "looking" okay, I saw as "no one is listening to me" and "why can't they give me answers."

After all was said and done and I look back over the last week, I realize life is really all about balance. I found myself completely tipped to one side forgetting that after all, Carli is just a little girl who CAN have just a normal virus. She doesn't have to have something major to land her in the hospital. An infection that keeps some children out of school for a few days, can actually send my child to the hospital for safekeeping.

Balance.

She's A Winner!

2010-03-25T00:11:00.002-05:00

Congrats to my little model! Carli won second place in the Kutest Kids Contest to raise money for the Ronald McDonald House in Columbia. This was the first year for the contest and in one week they raised $651. I am proud of ALL the models!

Vote for Carli and the Ronald McDonald House WINS!

2010-03-14T22:10:00.002-05:00

Two Years and Counting!

2010-02-28T19:14:00.003-06:00

Yesssssssssssssss! We have made it to two! Carli celebrated her birthday on the 21st. We feel blessed to have this little girl!

For Carli's birthday, we invited friends to paint unfinished pottery at Unique Creations in Jefferson City. It was fun to watch children of all abilities painting their little hearts out! Therapeutic for all!

School Girl

2009-08-12T20:42:00.003-05:00

We are excited that Carli started class The Special Learning Center (daycare really) two days a week. She started this week. I have to tell you that she has talked non-stop since Monday. I think this could be in her genes! I use to get into trouble ALL the time for talking in class. My mom could tell stories!

SO, she is doing really well. We are seeing WONDERFUL improvements in her willingness to attend to objects visually and her communication seems to have sky rocketed lately. She still isn't rolling over or sitting up, but we tested "muscle memory" activities today and she really took to them! More on muscle memory, visit www.neuroxcel.com/muscle-memory-therapy.php

Other than that, we have been busy this summer! Kari and I are taking our first vacation alone in Sept. I'm not sure if either of us are ready for it, but I think it will be fun! Colorado here we come!

Updates

2009-07-10T22:45:00.002-05:00

I have to apologize to those of you who follow Carli's story regularly. We have been so busy...I truthfully just haven't taken the time to write.

Carli is growing like a weed! She is getting so big! Today we visited the eye doctor. He doesn't want to see us again for TWO years! This is pretty good. Only thing is, we have always known that structurally her eyes are fine. It is the connection from her eyes to her brain that is the issue. But have no fear! We are working on this!

Carli got a stander today. (http://www.sosrehab.com/buffalostander.htm) This will help Carli to start putting weight on her legs. She still cannot sit up or roll over, but the more input we can give her the better!

If you haven't seen her in awhile, you wouldn't believe this kid. She's amazing!

Photos

2009-06-02T19:59:00.002-05:00

Carli had her pictures taken today! She is doing really well. She is moving more everyday...smiling all the time! You would be so proud of her!

March for Babies

2009-04-25T09:29:00.002-05:00

Tomorrow is the BIG day! We look forward to walking for a wonderful cause! The March of Dimes helps families like our to provide needed medical care. I am happy to do my part to pay back the favor!

I will post photos tomorrow!

First Easter Together

2009-04-11T20:15:00.009-05:00

Technically, Carli spent her first Easter (2008) in the hospital. Here are photos from our first egg-dipping fun this year!

First Egg

Happy Easter!!

Diamond Diggin' Diva

2009-04-06T21:38:00.003-05:00

Carli, Kari and I went digging for diamonds at Crater of Diamonds State Park. I had been promising Kari a trip, as she is a rock hound! We had the best time. The weather was perfect and we couldn't have asked for a better weekend. I highly recommend taking a trip to Murfreesboro, AR to dig for diamonds. I know you are wondering...did we find a diamond? No, but we found family time!

Oh...Puddin Head!

2009-03-24T19:39:00.002-05:00

This one speaks for itself...

We Love the PICU!!

2009-03-21T20:27:00.003-05:00

Carli is doing really well! It often reminds me of the people who saved Carli's life. There is nothing in this world that will ever repay the beautiful gift they gave me...Carli! So, because the task is so great...I feed them! :) Tonight it is sandwiches. I hope they know how much I love them!

Big Girl Eating!

Birthday Party

2009-02-27T21:53:00.004-06:00

It is hard for me to believe it has been a year! Carli had a fantastic birthday party. Thank you to everyone who helped us to celebrate a magical year!

Happy 1st Birthday

2009-02-21T19:08:00.003-06:00

Today we welcomed the first full year of life for Carli and don't you know we celebrated! It was a nice quite day alone with just the three of us. Tomorrow is the party! Here are some photos of Carli enjoying her day!

Carli Working It!

2009-02-16T21:14:00.002-06:00

We captured this video of Carli working her legs.

Do You See What I See?

2009-01-21T21:09:00.001-06:00

Carli had her therapy appointment today. She is working with OT and a specialist who focuses on her vision. The report from Kari was outstanding! Both of the therapists were completely amazed in her improvement. They hadn't seen her in three weeks with Christmas and Carli being sick. They said they couldn't believe how much stronger she is, her head control is fantastic, and they were really impressed with her eye contact. They both had mentioned that it seemed like she might be trying to process some of the activities they were doing with her. They thought her progress has been amazing in this past month!

Felling Better!

2009-01-18T18:59:00.003-06:00

Carli had the sickies! I am so glad that she is feeling better. It was so hard to be a mommy and sit back and watch my child feel sick and not be able to take it away. I was happy though that it was an "everyday" sickness. That's one for the record books!

Pizza Party Time!

2009-01-08T22:11:00.002-06:00

Because she has been doing so good, it is time to celebrate.

Carli hopes that the PICU night staff enjoys their pizza!

Pots and Pans

2009-01-04T21:06:00.003-06:00

At Christmas, Carli was playing with her cousin's pots and pans. We found that she loved the sound of metal clanging together! Today, Carli's grandma bought her the pots and pans!

New Year of Possibilities!

2009-01-01T10:56:00.003-06:00

Happy

New

Year!!!

Merry Christmas!

2008-12-25T20:50:00.004-06:00

Santa visited Carli and left cookie crumbs and a bit of milk behind...silly Santa!

Carli snuggles her new friend.

Hope

2008-12-22T20:41:00.007-06:00

I gave a small gift today to a friend. It was a silver ornament with a snowflake and the word "hope". When thanked for the gift, I couldn't help but reflect on this past year. It was because of this friend, because of you reading this blog, that I made it through this year.

Thank you for supporting our family over the last ten months. It is because of this support that we were able to find hope.

Carli has made beautiful strides in a positive direction. We know that she has so many wonderful experiences to come!

Christmas is coming...

2008-12-20T20:16:00.004-06:00

Kari and I love everything about Christmas. I especially love that warm feeling of the spirit of Christmas...the smell of baking cookies...the laughter of my sister and mom when we are making Christmas candies...

I cannot wait to share my favorite traditions with Carli!

New Photos

2008-12-17T23:31:00.003-06:00

Okay..you have to poke me. I cannot believe I have not blogged since Nov. 30th. Where has December gone?

Carli is doing well. She seems to be getting stronger. Today she had her photos taken and she pushed up all the way on her arms when she was on her belly. I couldn't be prouder!

Kari is teaching her how to "hug." She will squeeze her Snowie (a new snowman). She is trying so hard!

I cannot wait for Christmas. I know that Carli has no idea yet what is going on, but I love the spirit and feeling of this time of year!

Droooooooooool...

2008-11-30T21:07:00.002-06:00

Oh my gosh! I am sorry for those of you who check in regularly! I cannot believe I haven't blogged in a very long time.

Six maybe seven bibs a day. I wish these teeth would come through! Carli is drooling and gnawing on everything! It makes feeding time horrible. It is taking her forever to latch on and stay on her bottle.

She is doing well. I see so many little improvements each week in her therapy. That is, if she stays awake, we can see what she can do. I hear it is pretty normal for kids her age to sleep through lots of therapy. I hope tomorrow she has a good appointment!

Longer than Long...

2008-11-12T20:19:00.003-06:00

Holy buckets! Carli had a check-up today. She is 28.5 inches long. She had a huge jump on her growth chart. Her overall health is good. We would still like to see some more development, but it will come. Her head size didn't increase, which worries me. The doc says we know that her head isn't going to be a "normal" size due to the problems she has had, however I would like for it to continue to slowly grow with her. We go back in two months for another check-up to keep an eye on things. Have I ever mentioned that I LOVE Carli's doctors!? :)

Grow into a Butterfly

2008-11-09T20:59:00.007-06:00

In July, I listed somethings that Carli was doing. Here is an update (July in black, updates in orange)

Things Carli can do:

1. Hold her head up with trunk support - can hold her head up on her own.
2. Take all her formula by mouth in a normal bottle - eating solid foods (loves green beans and bananas)
3. Suck on a normal binkie - fickle binkie sucker. Won't suck on one at this time.
4. Coo when happy or upset and response to someone talking to her - I swear she has said "mom" a couple of times.
5. Recognizes voices (Mommy, Momma, Grandmas') - working on recognizing faces before anyone speaks.
6. Recognizes the difference between different stuffed animals - still loves bitty bird.
7. Move her fingers independently - moving all fingers, hands, arms in a semi-controlled motion.
8. Make faces which resemble happiness, but no full, ear-to-ear smiles - no change...still no smile or laugh.
9. Grasp my finger when placed into her hand, but will not reach out and grasp items - moving arms with closed fists towards objects as if wanting them. No grasping a wanted object.
10. Can turn her head from side to side and look around with trunk support - moving head from side to side without trunk support.
11. Can flip herself from her side to her back and needs encouragement to go to her tummy - showing progress; has rolled from tummy to back.
12. Can hold her head up at 90 degrees when on her tummy - holding her head up and looking from side to side when on her tummy; also pushing herself up onto her fists.
13. Hold or put weight onto her legs for a couple of seconds with Mommy help - can hold her weight on her legs for up to 30 seconds max; wanting to put weight on her feet and legs.
14. Responds differently to music verses talk - VERY interested in different types of music; has shown interest in piano, now she love singing voices (BIG response to opera).

New Toy and Bath Day

2008-11-05T21:32:00.004-06:00

Grandma bought a piano for Carli and she LOVES it! Today we had her on the floor and she tried over and over to roll over towards the piano. Kari even said she rolled over once but she didn't see it! RATS!

We have been very concerned with Carli's vision. Many of her doctors and therapists believe it is what's holding her development back. We have been focusing her therapies around visual activities. This new piano is really appealing and hopefully a tool that will help her! We see the eye doctor in a few weeks. We will be asking about cortical impairments vs. visual impairments.

Carli had a bath today. It amazes me how much she loves taking baths. Majorities of children I have known HATE bathes...she seems to love the touch and sound of the water. Her hair was crazy today!

Punkins for Sale...

2008-10-26T15:43:00.008-05:00

We ventured out on this fine fall day to enjoy the pumpkin patch at Peach Tree Farm (http://www.thepeachfarm.com/index.htm) in Boonville.

The air was crisp and cool. The sun was shining and the pumpkins were ripe for the taking (buying). A hayride took us around the farm and pond...Carli's first hayride! I strapped her to my chest and walked all around the farm looking at animals. The wind kept taking her breath away! A goat even tried to give her a kiss!

We pet the baby bunny and cuddled a puppy. We saw turkeys, donkeys, and lots of pumpkins and gourds. Kari picked out a GIANT pumpkin for us to carve!

It was a perfect fall family day!

Cleaning out the closet...

2008-10-19T20:44:00.003-05:00

Such a metaphor for life right now...

I was cleaning Carli's room today and came across this photo. It was the first time they let us hold her in the hospital. When I look back now, I realize the reason they let me hold her...

She has come so far!

Fishing

2008-10-14T15:11:00.004-05:00

So I haven't really felt like blogging. Maybe it is the weather, maybe it is my mood...maybe both!

We have been really busy around our house. We most recently got back from Roaring River State Park One of the events I work every year is the WOW Outdoor Recreation and Conservation School. I thought it would be good for Carli and Kari to go with me and enjoy the crisp fall air. Enjoy it they did!

Carli really loved looking up at the trees and clouds. YES, she is looking up. This is something she has just started doing!

www.mostateparks.com/roaringriver.htm

As you can see, we have introduced Carli to fly fishing at a young age! I strapped her to my chest and she kept reaching for the pole. She she would grab the line, I let her hold on. She didn't let go with every cast I made. She just kicked her legs and cooed!

Yesterday she had therapy. This was by far the best therapy session! Carli really is showing strength in her neck and back. She moved her head from side to side and pushed it up and back when on her belly.

I have always believed that fresh air and fishing does a body good! Even more reason to get out and play!

Blessed

2008-09-30T23:10:00.003-05:00

I have been thinking about how very lucky I am! After having my first birthday without the other half that made me whole (my dad), I have been reflecting a lot!

Just remember to make every day count!

Since Carli started solid foods, she has been making little improvements. Maybe it is coincidence, but she has started moving so much more. Tonight, when we were walking out of Target, the lights from the parking lot were very attractive to Carli. She started moving her eyes upward...UPWARD! This is a very new thing for her. She has always struggled to move her eyes anywhere but down...the lights brought them up!

Peas and Carrots...or Just Carrots

2008-09-24T21:20:00.005-05:00

Yes, we like carrots! This solid food game is fun! I love the faces. So far the only aversions are rice cereal and sweet potatoes. Everything else Carli seems to like. Green veggies next week! Those diapers will be fun!

Today we visited our friends at the hospital. Carli had a great time seeing her friends and speaking with everyone for the radiothon. If you haven't heard Carli's song, we will get a copy of it and I will try to upload it here on the blog (hopefully it won't turn out like the stinkin' vacation photos I have been trying to upload). I didn't cry nearly as much as I thought I would, but it was hard to hear stories about other children. When I started listening this morning, I was in tears. Stories of little ones not making it... I cannot even begin to express how very fortunate I feel to have my miracle baby!

THANK YOU CHILDREN'S HOSPITAL!!!!!!!!!!!!!!!!!!!!!!

Children's Miracle Network

2008-09-23T20:16:00.004-05:00

Join us as we help raise money for Children in Central Missouri!

Carli's song and story will be played for the Children's Miracle Network Radiothon between 2pm and 2:30pm on Wednesday the 24th and randomly sometime Thursday the 25th and Friday the 26th.

We will be at MU Children's Hospital for interviews on Wednesday as well.

Per the Children's Hospital Web site:

Children’s Hospital is teaming up with Children’s Miracle Network, Zimmer Radio Group and the Missouri Credit Union to host the “Miracles for Kids” radiothon Sept. 24-26. Local radio stations, 93.9 FM The Eagle, 94.3 FM KAT Country, 96.7 FM The Rocker KCMQ and Y107 FM will broadcast live from University Hospital’s main lobby from 6 a.m. to 6 p.m. Wednesday, Sept. 24 through Friday, Sept. 26.

The radiothon will feature stories about children and families who have benefited from the many services provided by the Children’s Miracle Network. All funds raised will help area children with special needs such as cancer, blood disorders, birth defects, trauma injuries, cystic fibrosis, kidney transplant and more.

Last year’s radiothon raised more than $221,000 in support of Children’s Hospital.

“All the money raised stays here in mid-Missouri to help local patients,” said Ted Groshong, M.D., medical director of Children’s Hospital and chair of the Department of Child Health at the MU School of Medicine. “The radiothon gives listeners an opportunity to learn about and support the miracles that happen for children and their families at our hospital every day.”

To donate during the radiothon, call toll free (866) 970-GIVE (4483) or visit one of the following Web sites: www.theeagle939.com, www.kat943.com, www.kcmq.com or www.y107.com.

"Stayin' Alive..."

2008-09-23T19:20:00.003-05:00

This finger thing is cracking me up! Carli has been moving her fingers independently. We were feeding her and she started pointing her finger and it made us laugh so hard!

Carli had her pictures taken today at the Special Learning Center. I cannot wait to share them with you. Which reminds me... I am still working on the best way to upload all of our vacation photos. I haven't forgotten!

I have had many people ask me how Carli is doing since our trip to the ICU last week (by the way...I love the ICU staff and our social worker!!). She is doing well. Her soft spot has been depressed (normal for her) and she is waking to eat. I have no idea what happened. As long is everything looks good, we aren't going to dwell. It does make me curious though, what if it happens again? I'd rather be overly cautious.

Another Trip to the Hospital

2008-09-17T21:22:00.005-05:00

Carli spent Monday and Tuesday in the ICU at the hospital this week. On Monday, I ventured to Mom's for Carli's therapy appointment. Carli would NOT wake up for anything. At that time, I figured that she was just tired. I told Mom to call me if she didn't wake up for her next meal. When she didn't wake to eat, I started to get nervous. After speaking with her doc, we figured that she was sleeping way too much and it was way to difficult to wake her... this lead to a trip to the E.R.

They decided to admit her to the ICU for close monitoring. They took pictures of her shunt, CT and ultrasound of her head, blood work, they tapped her shunt and took an EEG. The biggest concern was that her shunt was not working correctly. Everything looked fine. The EEG even looked slightly better than the last. It is still abnormal, but there is no constant seizure activity which means her meds are working!

SO...we have no idea. I am not going to over think the whole. I could "what if" myself to death. The best part of the whole thing was hearing that her nutrition (labs) was perfect and the results of the EEG. Comfort in knowing that her meds are working and not harming her liver!

We are back home and Carli seems to be acting "normal." Well, her normal anyway.

As a side note, when my father passed away, many of his memorial contributions when to the Ronald McDonald House in Columbia. Because we raised so much money, they created a name plaque in my dad's honor. Mom and Linda went to drop of toys at the House and saw it today. They said it created a wonderful feeling.

Squash

2008-09-09T16:42:00.003-05:00

Oh MY Goodness!! Do we love the squash or what? This is the first real food that we tried and she really did enjoy it! She is swallowing her food really well. She handles it good in her mouth from the front of mouth and pushes it back with her tongue and swallows. GO CARLI!

Carli got fitted for her Kid Kart yesterday. It will take several months for us to get it, but it will be a wonderful tool for Calri and her body. Here is a Web site that shows you what the kart looks like.

http://www.sunrisemedical.com/products/product_detail.jsp?FOLDER%3C%3Efolder_id=1408474395235859&PRODUCT%3C%3Eprd_id=845524441787895&ASSORTMENT%3C%3East_id=1408474395285139&bmUID=1220996766246

BLECK!

2008-09-02T21:44:00.002-05:00

Last Friday was Carli's swallow study and to see if we could start baby food. She still didn't pass with thin liquid, however we can still give her thickened formula. This also means that we can give her baby food because the consistency is perfect for her.

This past weekend we started with rice cereal. You can see by the picture how Carli REALLY feels about her first bite!

Look at What I Can Do!

2008-08-29T21:19:00.003-05:00

We are SOOOOOOOOOOOO excited! Carli just started doing this...

Boxes at Christmas time...

2008-08-19T20:23:00.002-05:00

Why is it that you can buy your child the most expensive gift and as a baby all they want to do is play with the box? It is the simple things! We have bought Carli many different things to help her along in her development.

Teetheres...frozen...hard...soft...what does she chew on? A spoon! A baby spoon! It all started with my fork. We let Carli smell different foods in hopes that it will help her cognitive development. I was eating a piece of vanilla pound cake and let her smell my fork. I wiped it clean and then put the cold fork against her face. The reaction was unforgettable! This led to me running the fork gently over her lips. She loved this! Kari got a baby spoon and put it in her mouth. She went to town chewing on it. She screamed when we took it away!

Speaking of screaming, Carli is starting to make new sounds. It is fun to hear Carli form these sounds. She is using her tongue more when she is cooking. She is making "nnn" sounds. Very exciting stuff!

Alabama...Mississippi...Tennessee...Arkansas...Missouri

2008-08-17T20:44:00.005-05:00

HOME! We got in late last night. We are all very exhausted. I need a vacation from our vacation! Everyone in our house pretty much slept all day...lazed around in our p.j.s!

Carli doesn't have any appointments until her swallow study at the end of the month. This is where she will be evaluated for her ability to take solids! I see strained peas in our future!

We have lots of photos to post. Here are few of what's to come...

Lazy Days...

2008-08-15T11:37:00.002-05:00

We have been enjoying ourselves on the beach! Carli loves the sea air. We had received an umbrella stroller from a very generous co-worker and have been using it instead of the cumbersome travel system. Carli loves being able to sit up-right and see everything going on around her. Yesterday we were in a shop and she was just cooing and cooing. Everyone in the shop got a kick out of her sounds!

I hate that I cannot post photos from the island. Connectivity is sketchy! I promise that I will gather them and put an album up when we return. I am hoping to have this up by the end of the weekend!

Oh, by the way, only one issue while we were here...Carli's g-tube button had a blowout! Auntie Linda was holding her and we heard a pop and the button came flying out of her belly. It scared the heck out of Linda!!! Luckily we had the emergency button with us and was able to replace it immediately. I called and had a new back-up button shipped to us. It was here within two days. What a way to learn to change the button!!

Fun in the sun!

2008-08-12T21:26:00.002-05:00

The wind was blowing extremely hard today at the beach. Carli wasn't sure of what to do with the breeze hitting her face. After packing three beach chairs, a child's wagon, boogie board, four beach umbrellas, three sandcastle sets, three bags of towels and clothes, two coolers, and one giant inflatable whale, we decided it was too windy to sit at the beach. We hauled everything back to the pool and took turns walking to the beach to look for shells.

Carli loved the pool. We found a crab in the pool (the pool was filled with salt water...very interesting!) and rescued it to the sea!

Auntie Linda found lots of jelly fish and even a dime!

Tomorrow we are headed to Gulf Shores!

We are having troubles downloading photos to the blog. Keep looking for them, we will get them loaded eventually!

Finally on Vacation!!

2008-08-10T22:38:00.002-05:00

After 18 hours of driving, 4 poopy diapers, several feeds by mouth (mommies included) and one VERY interesting stop in Arkansas, we finally made it to the beach!

Carli zonked out early and after an hour of unpacking, we went for a nice quiet walk on the beach.

Stay tuned for more photos! We will be here until Saturday!

Four days...

2008-08-06T20:22:00.003-05:00

until we reach the beach!

Swimsuit...CHECK

Sunscreen...CHECK

Baby beach tent...CHECK

Sand castle building supplies...CHECK

Life jacket...CHECK

Beach umbrella...CHECK

We can't wait for sand in our toes! Keep checking back for beach pics!

**BTW - the sand castle in the photo is not our doing...please lower your expectations for the castles we will be building! :)

Glow Worm

2008-07-31T22:11:00.002-05:00

Today...she REACHED! Kari witnessed her reaching out with open hand towards her glow worm. She did it twice. After looking at her hand, she reached out for her little friend.

I cried!

Sleepy Day

2008-07-30T19:35:00.004-05:00

Little Miss "I Like to Stay Up All Night" was up until 4:30am today and slept all day. Some how she has her sleep schedule all mixed around. Other than that, she is doing pretty good. We are still battling daily seizures, but hopefully we can figure out her meds.

Do you have children? Do you remember when your child found their voice? HOLY COW! Carli loves her own voice. Last night she didn't need anything. She had a clean diapie, was fed; she was good. She was screaming fun squeals at the top of her lungs. It was pretty funny!

Hopefully laughter, giggles and smiles will happen soon!

The picture is Carli practicing holding her bottle. She has a hard time gripping big objects.

Making Progress

2008-07-28T21:05:00.007-05:00

Carli had a pretty good day with her seizures. She had only 5 and all around 5 mins! Her OT (occupational therapist) came today. Carli did REALLY well, she is showing excellent head control. Her OT had a fun chair to show us and I think we are getting it. It has lots of ways to position Carli to get good stretches.

I am so proud of Carli's progress. She is reacting strongly to a vibrating teether (she pushes it away from her upper lip...probably because of the teeth coming in). When her OT put the teether into the palms of her hands she would grip. So, she put rattles in her hands, put the teether to her hands and she grasped the rattle. She held on to them for a long time and even shook them...barely! It made me cry. It was all VERY good!

I thought I would catch you up on the things that she can do:

Things Carli can do:
1. Hold her head up with trunk support

2. Take all her formula by mouth in a normal bottle

3. Suck on a normal binkie

4. Coo when happy or upset and response to someone talking to her

5. Recognizes voices (Mommy, Momma, Grandmas')

6. Recognizes the difference between different stuffed animals

7. Move her fingers independently

8. Make faces which resemble happiness, but no full, ear-to-ear smiles

9. Grasp my finger when placed into her hand, but will not reach out and grasp items

10. Can turn her head from side to side and look around with trunk support

11. Can flip herself from her side to her back and needs encouragement to go to her tummy

12. Can hold her head up at 90 degrees when on her tummy

13. Hold or put weight onto her legs for a couple of seconds with Mommy help

14. Responds differently to music verses talk

WAHOOOOO!!!!

2008-07-24T18:55:00.004-05:00

The test was NEGATIVE! The scary test that we were waiting for finally came back. It was the result we were hoping for and many people were praying for! Negative! I cannot even tell you how fantastic this is!

Carli has been taking every feeding by mouth. She is taking five bottles a day. She even took seven ounces tonight and begged for more! Dr. M even told us that we should think about another swallow study to see if she is ready for solids. SOLIDS!!!!

Squished peas here we come!!!!!!!!!!!!!!!!

New Vest

2008-07-21T19:28:00.002-05:00

Carli got her new vest today. This vest helps to keep her chest stable so she can work on getting her head, neck and shoulders strong. She is so adorable in this vest. She works so hard to keep her head up. She enjoys being able to look around. I see a difference in her face when she's upright.

Toofies!

2008-07-20T21:20:00.004-05:00

We have three teeth! No kidding! We hadn't been using our fingers to do mouth play; we have been using the nipple of the bottle. I was completely shocked when I stuck my fingers in there and found three teeth! One of which has already cut through and the other two are not far behind!

We have seen a decrease in seizures, however some of them are still very strong. It would be great to see them lessen!

She is getting more and more vocal. Today she talked back when we made sounds at her.

Looking at Kari holding her...she is the length of Kari's torso. She is getting SO big!

Progress!!

2008-07-19T20:25:00.003-05:00

Carli had a head ultrasound on Thursday. The report says:

"THE SUPERIOR SAGITTAL SINUS IS PATENT AND NORMAL FLOW IS SEEN WITHIN IT". That means that that blood clot is gone and the Superior Saggital Sinus is completely open with NORMAL flow!

What a huge step! There are so many hurdles to overcome, but this is a great one! We are also excited to announce that Carli has been taking four of her five feeds by mouth...through a normal bottle!

We are still waiting for some very important labs to come back. No news yet.

Art in the Hospital

2008-07-12T22:14:00.004-05:00

We are actually home tonight. We were able to leave the hospital today. With a new diagnosis, possible cause and new medicine in tow, we arrive home late this afternoon. Of course, it is always good to be home.

Today Carli and I painted! I asked the Child Life Specialist at the hospital for some finger paint and paper. Carli did some great artwork. She really seemed to like the slime of the paint on her fingers. Messy, but fun!

Tonight, another new step! I prepared Carli's formula in an Advent bottle instead of the old Haberman. She took right to it...BIG STUFF! She took the entire feed like a Rock Star!

I find myself not really wanting to talk about our trip to the hospital...just makes me want to cry. All I can say, is keep praying for her!

Back in the Hospital

2008-07-10T19:24:00.003-05:00

Yep. Back in the hospital. Carli was admitted yesterday. We went to our doc appt to have her blood drawn. While in the clinic, she had a severe seizure that the doc did not like. She called the neurologist and he had Carli admitted right away.

After an EEG, it was determined that Carli has infantile spasms (http://www.answers.com/topic/infantile-spasm?cat=health)

Short of the long, these are rare seizures that are very hard to control with severe delays even severe mental retardation, possible autism.

Today, was not a good day.

Sleeping Baby

2008-07-06T21:26:00.002-05:00

We are getting into a little routine. Every night Carli gets a bottle by mouth at 8:30pm. By 9pm she has her g-tube feeding and by 9:15pm she is asleep. See photo for proof!

Oopsie Daisy

2008-07-05T23:13:00.003-05:00

So what was an oopsie daisy became a WOWSERS! We went to watch the fireworks with the family. So like good mommies, we packed everything we could think of...warm clothes, extra blankets, socks, hat...you name it. We had chairs, blankets for ourselves and camera. We even double checked ourselves. Once we got settled into our viewing spot, it was time for Carli's dinner. Ummm...where the pump? Yes, I had forgotten the one extremely important piece of equipment needed to feed Carli through her g-tube. One thing I did have was her bottle...she took her entire feed by mouth. I gave it to her slowly so not to upset her belly. She took it well! I am so proud of her!

Consistancy!

2008-06-30T21:27:00.002-05:00

Still taking the bottle! I cannot believe it! Holy Cow! Tonight she even screamed for me when I took the bottle out and wouldn't give it back. I let her take two ounces and then I just had to stop. I didn't want her to get sick with her tube feeding.

She is getting so big! This past week at her doc appointment she weighted 14 pounds 14 ounces and was 25 inches long. She is still on the small size for her age, but I swear we are going to buy a bra for those cheeks!

Today at her physical therapy, her therapist said that she could tell we have been working with her. Unfortunately, it looks like we are going to have to get splints for her hands. Children (even adults) with brain injuries tend to make fists and tuck their thumbs. Carli is no different. Most of the time her hands are in this position except when she is sleeping her hands are open and loose. Hopefully the splints will make a difference.

**Photo - Carli with Aunt Linda

What a Weekend!!!!!!!

2008-06-29T17:17:00.004-05:00

Are you sitting down? I hope so if you are at a computer! Carli had the best weekend EVER! We have been working so hard with Carli and feeding her by mouth with a bottle. Well, this was our weekend...she DID IT! After several minutes of struggling yesterday, she just sort of figured it out. I didn't want to stop feeding her!!! Today we tried a couple of times and she was too sleepy, but tonight..WHAMO...she did it again! She would have taken her entire feed if I would have let her. I am so proud of her!

Fantastic Day!

2008-06-24T19:33:00.003-05:00

Other than four month shots, Carli had a WONDERFUL day today. We spent the entire day at the hospital running from office to office for appointments. Our first appointment was with the cardiologist. When Carli was first admitted to UMCH they noticed she has a hole in her heart...a perfect murmur. At the time, it was the least of our worries. Now, the smallest of issues has been the first to be fixed! Today, her cardiologist gave Carli a "perfect heart!" You have no idea how it feels to hear something like this. Even the littlest thing like a murmur, which over time usually corrects itself, but to hear that she get a check plus. It is an amazing feeling! I would love to hear something like this from her neurologist. I know that this wish is a long shot, but hey, you never know! The photo is Carli having her EKG done today.

On another good note...so sometimes I am not the brightest crayon in the box. We finally put two and two together! If Carli will suck fine on her Haberman nipple, maybe she will suck from the Haberman feeder. I could not find the other pieces to ours, so I ordered a new system online. Can you believe one bottle costs $25? It is worth it! Tonight, she took right to it. It was the best bottle feed I have seen her do since before she was ever admitted to the hospital. After 1/3 of an ounce she fell asleep. I know she is going to rock this bottle! We also increased her feeds today. We increased by 50cc a day (this is a bit over an ounce and half). She is such a big girl!

First Time Away

2008-06-21T20:22:00.002-05:00

Mommy's first time away...it truly was painful! I had to work the Katy Trail Bike Ride, a big event that I put on each year for MO state parks. Carli stayed one night with Grandma and was a big girl! She even slept (mostly) through the night. She is on this kick of waking up at 2am and staying up until 5am or so. BLAHHH! So, I had the baby blues while I was away, but I think I did pretty good!

Nothing really to report. There hasn't been much smiling, but she is really holding her head up well. She has days where she can find her fist and bring it to her mouth, but just like with tracking, some days she can and some days she cannot.

We are still working on the bottle. She took half an ounce the other night. We accidentally thinned her formula too much and she seemed to like and take it better. Our therapist gave us new thickening stuff with flavor.

Hopefully this work!

Found Her Fist!

2008-06-12T20:48:00.004-05:00

Last night Carli spent about an hour losing and finding her right fist. She also decided that she likes how it tastes. In the past few weeks, she has also decided that she no longer wants to suck on a binky or the bottle. It is like pulling teeth to get either in her mouth. This scares me a bit. I don't want her to be turned off from this. We have even tried adding sweet flavor to her formula and that doesn't even work.

TURKEY! Tonight I pulled out "ole faithful"...the Haberman (see April 6th posting). Once I stuck it in her mouth, she started sucking right away. She's so fickle!

Summer Time

2008-06-11T21:26:00.002-05:00

I KNOW! I am so horrible. My computer has been away being "fixed". The letter "v" popped off in the middle of my typing. I can't imagine that I type that hard!?

So, it is summer time and what better way to celebrate than in the pool? Here is Carli in her first swimming suit in her first swimming pool with her first dose of sunscreen and umbrella. Can you say overprotected? Nahh...safe!

I called Carli's surgery RN to make sure we could immerse her in the pool. I guess I shouldn't have phrased it this way, because I think I scared him! He told me that we could only let Carli in the water up to her neck! He also told me to tease Kari and tell her that we could only put her in the water one leg at a time! It was rather funny...even more funny that Kari believed me for like two seconds!

Hope you are staying cool!

Pop Up Little Weed!

2008-06-03T22:45:00.003-05:00

She's growing like a weed! Let's see...just under 14 pounds, 25 inches long and 39.5 inches on her head. She's growing too fast! hehehe. I mean, she is right on schedule, but I can see her filling out every day!

Today, Carli took several good sucks off of her bottle. The first few really choked her up, but the more sucks she took the better her swallow. I was so proud of her. We tried a new bottle too. We used the Soothies bottle with a #3 nipple. I also didn't thicken her formula as much as the therapist had first ordered. Carli seems to handle the less thickened liquid.

Hopefully it won't be long and she will be taking more of the bottle!

Tonight she sang along with Kari and me on the karaoke machine. She really loves music...she sang and cooed the whole time!

Carli's Party

2008-06-01T16:33:00.004-05:00

I am thankful to everyone who came by to see Carli. We had a great time and enjoyed everyone's company. Here are some photos!

My First Sleepover

2008-05-28T20:50:00.002-05:00

Carli's cousins Lexi and Beau came for a sleepover. We had planned to put up the tent and have a camp out but the weather turned out to be too cool and windy. Instead, we put our sleeping bags on the floor and created a nest! We roasted hot dogs on the fire, made s'mores, played "Deal or No Deal" and watched movies and ate homemade popcorn. It was fun!

Carli got to see the doctor and got a check plus! She was so happy to see how much Carli has progressed. Carli even impressed the doctor when she was down on her tummy and held her head up almost to 90 degrees. Her head control is really coming along. Tonight she held it up for almost three minutes!

She now weighs 13 pounds and is at 25 inches long...which means she is fast growning out of her pjs! DARN, I need to shop for more baby clothes! hahahaha!

Silly Mommy

2008-05-26T19:16:00.003-05:00

So, last night Carli wanted to be up every hour, on the hour. She is usually good about sleeping through the night, but last night was different. We started a new feeding schedule today and are now on a maintenance feed. That means that Carli doesn't have to feed continuously through the night. After waiting up completely stupid and after only a few hours of sleep off and on, I got up to start Carli's feeds.

I put her down in her bassinet, pulled the covers up cozy and started the feed. After an hour, I checked the pump to make sure it was paused and counting down to the next dose. Pulling the tubes up, I noticed that everything was all wet. At times we have trouble with a small port, where we give meds, staying open and spilling formula. No, that was closed. AH HA! Silly, Mommy! I everything in order; I just forgot to hook it to the baby!

Formula everywhere!

Carli is having her first camp out with cousins Beau and Lexi. With rain, this should be fun!

New Tricks

2008-05-24T07:24:00.003-05:00

Carli's cold is doing much better. I am still amazed at how much snot one little baby can produce!

Yesterday, Carli started bring her hands to her mouth. Not all the way, but half-way which is great! She is also attempting to bring her hands to objects. Kari bought a toy to attach to the carrier that strings across from handle to handle. It lights up and has fun colors. This morning, Carli brought her hand up towards the toy when it would stop moving.

WOOHOO! Go Carli!

Giggles?

2008-05-21T20:20:00.003-05:00

Carli has been smiling quite a bit. Not a full face smile, but the corners of her mouth have been turning upwards. It is SO cute! Monday she even gave out this sound that sounded like a laugh. She loves Kari. Kari sings to her and she responds by cooing back. It is the most precious thing I have ever seen. Today, Kari put on Bob Seger and Carli seemed to enjoy his music. She cooed the entire time he was singing.

Carli had physical therapy today. Her therapist said that Carli had made good improvement since last week. She could tell that the extension in her neck was better and was tracking with her eyes to both sides. Next week we would like to see better reaction to some oral stimulation. She wasn't too interested in what the therapist was doing, but after working with her a bit, I am sure Carli will get use to the feeling!

A Time for Firsts...

2008-05-19T14:12:00.002-05:00

Let's see, first ER trip...first cold. I am sure we have lots of "firsts" coming our way!

Saturday night was pretty darn scary. Carli decided that she didn't feel very good and tried trowing up. Because of the procedure she had done with her g-tube she cannot. Therefore, she was having troubles breathing. ER doc said that all her vitals were good and a chest x-ray was normal. Thank goodness!

After all of that, today Carli has a horrible cold. She is very fussy. I suppose I am too when I don't feel good.

Feel better soon Carli! :)

Inability to Communicate

2008-05-13T19:31:00.003-05:00

Carli continues to make these funny movements. We are guessing it is seizure activity. I got a camcorder to record what she is doing (good and not so good). It is so much easier to have the actual thing on tape than to try to explain what I am seeing.

Carli never makes the movements when anyone but Kari or I are watching. Silly goose! She is doing these movements 3-4 times a day over the last two days, but today it wasn't nearly as frequent. Not much of a "routine."

It's kind of like when your car is making that CALUNKING sound and when you take it in and you explain the sound as a CAHUNKING sound and of course it doesn't make the damn sound... it's like that! I am sure to everyone I am kind of like the human in the Far Side cartoon. Everyone else just hears, "Blah blah blah."

First Mother's Day!

2008-05-11T07:36:00.003-05:00

She passed...she passed! Carli passed her swallow study! She had her study on Friday and passed with thickened liquids. We are now able to give Carli formula with rice cereal by mouth. She isn't doing all that well with it, but at least we get to try! I think she has yet to master the coordination of sucking and swallowing, but we will continue to try and go slow!

I am proud to say that my first Mother's Day gift from Carli was that she decided she wasn't going to suck on the Haberman nipple and go back to the "natural flex" binky! I did the happy dance all over my mom's kitchen! You have no idea how excited I was!

WAY TO GO, CARLI!

Flowers and Baby Steps

2008-05-06T20:51:00.003-05:00

Today Carli helped Kari and I plant flowers. Carli even picked out a hibiscus for Kari for Mother's Day. Okay, so not really, but it's fun to think she did! We have had a rather uneventful few days. Carli is doing well. She is starting to tell us more about her wants. She is using her voice more and more. She has different cries and noises and we are starting to figure out which is which.

She still is sucking on the Haberman and nothing else. Friday is our swallow study. Hopefully Carli will do well so we can introduce the bottle again. Baby steps!

Baby Model

2008-05-04T16:56:00.002-05:00

Carli had her pictures taken today by Aunt Linda. She is such a good baby!

Purpose

2008-05-03T20:27:00.004-05:00

We got to see the neurologist earlier than expected. He is a fantastic doctor. He keeps us grounded, yet gives up hope.

He said that the future for Carli looks challenging. She most likely will have trouble moving (walking...arm movements) and learning. He said she will have probably have moderate disabilities.

Even though this isn't new news, it is so hard to swallow. I wake up every morning just hoping and praying that she will prove everyone wrong (she has so far!). I can only hope to think that she will continue to improve and amaze everyone. That's only half of me. The other half is pissed off at the world and wants nothing more than to scream, fight, punch... you name it.

Carli is a beautiful little girl. She has a purpose in life...she was given to us this way for a reason. It is difficult to find that reason at the moment, but I will keep focusing on that.

EEG

2008-04-30T20:31:00.002-05:00

Yucky news... I guess we knew what was coming, but you really just try to block out the bad and focus on the good. Like, Carli is really sucking on her binky and trying to smile when we play patty cakes. Today, we got a knock backwards. Carli's EEG was, as we expected, abnormal. She had lots of abnormal spikes. I'm not sure exactly what this means, but we will be seeing the neurologist next week. I am sure he will explain it to us.

What is an EEG?
An EEG (Electroencephalogram) is a test that measures the electrical activity in the brain, called brain waves. An EEG measures brain waves through small button electrodes that are placed on your child’s scalp. http://www.chkd.org/HealthLibrary/Facts/Content.aspx?pageid=0357

My Little Aviator!

2008-04-29T21:37:00.004-05:00

Doesn't she look like it? Or maybe she looks like she is going to play water polo, or maybe a sky diver!

She is the best little baby! She did really well during her EEG. She pretty much slept through the entire thing. I know it sounds like she sleeps a lot, but it is more like we do everything during her sleepy times. I guess it worked out for the better for this test.

No results yet, but it shouldn't be long.

Stay tuned!

Addiction

2008-04-28T21:35:00.003-05:00

Baby clothes! I cannot help myself. Every time I walk into a store I have to go to the children's isle. I cannot stop the compulsion to spend money on the most adorable baby girl items. I never had this problem with Beau (my now eight year old nephew...however I still do this with Kari's nine year old niece). I knew I would be in trouble if I had a girl. Even the other day when someone offered me clothes from a child who had grown out of them, I couldn't say no!

If anyone has a solution for this problem, please let me know...

Tomorrow is Carli's EEG on her head. We are needing to find out if these funny movements are break through seizures or what. I was watching her today and I am not sure what it is. I can almost put money on the fact that Carli will not do it when her neurologist looks at her!

Bad Blogger!

2008-04-27T20:37:00.007-05:00

I have tried to make sure I write a little something every day, but I am WAY behind! I will try to make up for it today!

Today was the March of Dimes walk and of course Carli wanted to sleep! Even though the weather was icky, the turn out was pretty good. We did the abbreviated version of the walk because of the rain, but I was still proud to be part of the event. I was even more proud that my daughter was the Ambassador baby for The Schaefer House. They had a moment of silence for babies who had passed. I cried thinking that Carli could have been one of those babies. Scholastics was a sponsor of the event and they were selling books to raise money for March of Dimes. Being the lover of children's books that I am, I couldn't resist! I bought ten books!!

Carli has been doing really well. She may be having break through seizures, but we cannot be sure. They are adjusting her medication. We are spending at least two days a week in Columbia right now, which is havoc on the old gas tank. We won't get into that!

Rolls! This kid has rolls! I love the ham hocks she is getting around the thighs. I think my favorite roll is the one on her wrists (see above picture). Yes, she has wrist-rolls! I love it!

We are finally home! The house was absolutely a mess! I spent all of yesterday cleaning and organizing. No one has done anything here since I had Carli. You can ONLY imagine! I finally found the floor under the dust and lady bugs (DON'T ask!). It feels good to be home though. You begin to appreciate your bed, even though it's lumpy!

Stay tune for the next blog about my addiction to...

Significant Improvement

2008-04-23T19:50:00.002-05:00

That is what the report says...Carli's ultrasound shows significant improvement!!!!!! This is such a nice surprise! Our doctor's appointments were all very good today. Carli will start on bolus feeds very soon. This means that we get to try another swallow study in TWO weeks!

I am so proud of the progress Carli is making. She will have an EEG soon. Keep your fingers crossed!

Truly a Momma!

2008-04-22T22:08:00.003-05:00

Okay, yes, I have become a mother! I was driving down the road and all of a sudden Carli started making this very scary sound. To me, it sounded as if she couldn't get her breath. I about ran off the road trying to bend my neck around to see if she was turning blue. Finally, I got safely off of hwy 179, I slammed the van into park and ran around to see what was causing Carli to make this funny sound.

I stared at her forever. She wouldn't make the sound! I stroked her face, checked her belts...nothing. I got back in the drivers seat and took off. Again, she started with the funny gasping sound. Kari and I think that maybe she was getting car sick. When she had her g-tube surgery, Carli also had a procedure called a "nissen." Described below. I guess you could say that I probably over-reacted to the whole situation, but I am a new mommy!

Columbia University Dept of Surgery http://www.columbiasurgery.org/divisions/surgical/gerd.html
The operation for treatment of Gastroesophageal reflux disease (GERD), [nissen] fundoplication, involves constructing a new "valve" between the esophagus and the stomach by wrapping the upper portion of the stomach (the fundus) around the lowest port of the esophagus. As the stomach becomes distended during a meal, the wrap compresses the lower esophagus, preventing reflux. Fundoplication also involves repair of a hiatal hernia (if present). For patients who have other problems contributing to or accompanying their GERD, such as a swallowing disorder, a shortened esophagus, or gastric outlet obstruction, there are variations to this surgery so that there is a better overall control of symptoms.

VP Shunt

2008-04-20T20:41:00.004-05:00

Carli has a shunt that was place in her head that allows fluid to flow from her head to her tummy. The shunt has a tube that is placed into the ventricle and at the other end, tubing that runs down her neck just under her skin into her tummy.

Since Carli has had her shunt, she has acted like a totally different child. I am thankful for her surgeon and the amazing work he has done!

Growing Like a Weed

2008-04-19T19:12:00.003-05:00

Can you believe how fat this girl's cheeks are? This picture was taken today and I swear she's gained a pound in the cheeks alone!

The hair on her bald spots are finally starting to grow in. I wonder if her hair will grow in differently there than the rest of her head? That would be awful if it was a different color on half of her head! Oh well!

Nature Outing!

2008-04-18T18:27:00.002-05:00

Carli had her first visit to the Runge Conservation Nature Center today! I love that place! Some of my favorite memories have happened there; some of my favorite people work there too! Carli got to meet Robin and Alane and received lots of lovin'. I tried to keep her awake to show her the fish, but she kept snoozing until Ms. Robin started snuggling her.

I cannot wait for her to experience Haunted Habitats and all the other events at Runge. I know she will grow to love the nature center as much as I do. If you haven't been there, I HIGHLY recommend it. There are nature trails, programs and events for all ages...BIG kids too! You can stand nose to nose with a giant frog and travel through a cave. I'm telling you, this place is cool! For more information about the nature center, visit:

http://www.mdc.mo.gov/areas/cnc/runge/

Walk in the Park

2008-04-17T19:32:00.002-05:00

Today we went for a walk in the park. It was a beautiful day! Carli, Kari and I met up with Aunt Teri and Carli's cousins, Lexi and Myah. We enjoyed walking and identifying birds, flowers and other wildlife! I cannot wait for Carli to run and play on the swings with her cousins!

G-Tube

2008-04-16T20:01:00.018-05:00

Carli had her first evaluation with her in-home physical therapist today. Of course she was asleep! The therapist worked her range of motion and tried to get her to track with her eyes just before she was completely out, but it was useless! :) She did show us how to stretch Carli on an exercise ball...how cute was that? Can you imagine a tiny baby working out on a HUGE ball? She did like it when we lightly bounced her on it and she didn't even mind lying on her back to stretch out her hips! I cannot wait to get her on her tummy on the ball! We will have to wait until she is cleared from her surgeon who placed the g-tube.

I am sure, if you've never seen or experienced one, you are wondering what a g-tube, or feeding tube, is or looks like. Carli has a little button, Mic-Key Button, that was placed on her left side which is connected directly to her tummy on one end and to a pump on the other.

You can see in the picture that there is a tube that hooks into the button like a key (hence the name Mic-Key Button). The other end is hooked into a pump that forces food at a selected rate to Carli's tummy. Since Carli cannot take anything by mouth, we also use this system to give her medications.

This surgery was done laparascopically. You can see on Carli's tummy spots where the scopes were placed during her surgery. They also went in through her belly button.

Just under the tube, to the left of the button, you can see a few strips of tape. These are covering the area where Carli's neurosurgeon placed the tubing for her shunt. Maybe in the next blog we'll get into that!

We Got a Lunker!

2008-04-15T21:06:00.003-05:00

Ten pounds seven ounces!

Carli weighed in today at 10lbs 7ozs! Her doctor was SO proud to see her improvement! She was very alert for her appointment and was even showing Doc how she sucks on her binky! She had to have blood drawn to check to make sure she is in a therapeutic range for her phenobarb, but other than that she was looking good! It is hard to believe we have come this far. I know she still has a long road ahead of her, but this baby is amazing! Tomorrow is her first in-home physical therapy appointment...I hope she can stay awake for that!

Music

2008-04-14T22:55:00.002-05:00

Carli is fascinated by music. Ever since I was pregnant, Kari and I have played all sorts of music for her. When we arrived in the PICU, we have had music playing. This hasn't stopped since arriving home. We have found that Carli is very fond of the piano and even ponders the sounds of the bag pipes (her grandmother is Scottish...she was testing out Carli's affinity to her roots).

Everyone has taken notice of Carli's long, beautiful fingers. "Maybe she will play the piano." Carli's great grandfather was a magnificent pianist. Maybe she will take after him?

Little Shopper in the Making

2008-04-13T22:20:00.002-05:00

She's a show-stopper...or should I say shop-stopper! This family is full of girls who LOVE to shop and Carli is no different. Okay, right now she's no different, but I don't think she stands a chance with my sister and me! I think her other momma will balance it all out! I am sure Kari will rescue her from us; I just know it!

So down the isles we go. Every where we turn there are "ohs" and "awes". She can't help that she's so cute! :) One little girl said, "Mommy, look a baby! Is she real or is she fake?" She must look like a doll! I couldn't agree more. She does look like a doll!

March of Dimes and The Schaefer House

2008-04-12T18:20:00.005-05:00

Carli is excited to announce that she gets to be the "inspiration baby" for the Schaefer House during their efforts to raise money for the March of Dimes "March for Babies" walk on April 27th.

Carli will be walking with her Mommy Andrea, Aunt Linda and Cousin Beau and many others. You can join us if you'd like! The walk with take place at Memorial Park in Jefferson City at 1:30pm. Our goal is to raise at least $300 in donations.

The Schaefer House (http://www.theschaeferhouse.com/) is also selling raffle tickets ($1 for 1, $5 for 6 chances). Winners will receive Schaefer House gift certificates.
For more info or to enter the raffle, contact me at: little.miracle.baby@gmail.com

To read Carli's story or to make a contribution to the "March for Babies", visit:
www.marchforbabies.org/little_miracle_baby

*To type in the address, place an underscore ( _ ) after "little" and "miracle".

STOP...Stroller Time (Insert Hammer Music Here)

2008-04-11T18:43:00.002-05:00

Okay, I know it is suppose to be easy open with one button, but why is is to difficult for me to open the darn stroller? It is like the Cadillac of all strollers; it is a carrier, car seat and stroller in one. The silly thing was so big I had to buy a van to put it in! So today I tried it out for the first time and it took me and my mom like ten minutes to figure out how to open it! I am sure we looked hilarious in the parking lot!

"The most astonishing thing about miracles is that they happen." - GK Chesterton

I'm a Little Show-off!

2008-04-10T21:02:00.000-05:00

So, today Carli got to show-off at my work. She had a slurry of on-lookers. I felt really weird to be back in the office, but it was wonderful to be able to introduce her to everyone! We have had amazing friends and support through this trying time. Kari and I are extremely lucky!

This little one has had many people praying and sending positive thoughts our way. I received so many cards from co-workers that the volunteers at the hospital were commenting on the mail Carli was receiving.

I am looking forward to the future!

14 Binkies

2008-04-09T23:36:00.000-05:00

Yes, another blog about binkies. As I type this, we currently have 14 binkies in a drawer...

Kari and I found ourselves out buying more. We keep trying to find "the right one." We found one tonight that might do the trick and get Carli sucking/swallowing again. Carli seems to like the haberman, sooo we looked for binkies that were long. The one she seems to be interested in now is the Gerber Natural Flex.

Wish us luck!

First Night...Alone...Without Nurses!!!!

2008-04-08T11:01:00.000-05:00

We did it! We gave her meds, changed her feeds and even got sleep! I didn't quite know what to do with myself without having nurses and doctors waking me up every five minutes. And no monitors to watch...no beeping sounds... I almost had to find something with an alarm to set off so I could attempt to sleep (hahaha).

I am sure it will take some getting use to, but I am SO thankful to be home with my family and my baby girl!