Fishy Watch

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

New puppy

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

39.5 inches

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

Rolling on over!

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

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?

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!

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

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!

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!

Two Years and Counting!

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

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

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

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

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

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

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!

This one speaks for itself...

We Love the PICU!!

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

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

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!

We captured this video of Carli working her legs.

Do You See What I See?

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!

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!

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

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!

Happy

New

Year!!!

Merry Christmas!

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

Carli snuggles her new friend.

Hope

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...

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

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...

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...

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

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

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...

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...

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

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

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

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

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..."

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

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

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