The County Fair

Looks like Sidney and CeCe had too many rounds on the Clowns.

Madison felt so cool standing on this tree!

I have only a single memory from my childhood of when both of my grandma's were together (they lived a distance from each other). That one time, seeing my grandma's talking to each other, I thought was the coolest thing. I wonder if that is what Cayman is thinking, reclined in her stroller watching Grandma Cindy and Grandma Sue talking.

The girls rode the carousel.

My heart melts over and over when I see these pictures of Cayman and Grandpa waving to each other.

Cayman was not a fan of the pigs. She is starting to show that she feels danger in situations and apparently the pig was not on her "safe" list. When the pig came near us every muscle in her body tensed up and she snuggled tightly into me.

My blogging friend and fellow Hydro Mom, Sara, along with her son Kadyn, were in the area so we made plans to meet at the fair. The last time we saw Sara and Kadyn was at Cayman's benefit dinner last summer. It was a great time catching up with them.

There's Daddy and Cayman mounting the many stairs of the tall Super Slide.

In the racing lanes it's CeCe, Daddy and Cayman, and Sidney in the lead.

Look close. Do you see that big smile on Cayman's face?

Oh yeah, Cayman liked it!

Another trip down, but with Mommy this time.


Even Grandma Sue had a turn sliding down with Cayman.

Cayman Says...

"Go Buckeyes!!"

Cayman's 1st High School Football Game

It was Daddy's old hometown
(where he grew up)
vs.
Our new hometown
(where we live now)

Hmmm...who should we cheer for?

video, crying

I consider "crying" an achieved milestone for Cayman.

Months would go by before we would hear her cry. I think the longest span was 6 months.

Her complaints were always in the form of a whimper or fussiness, and even that was pretty mild. Nothing close to a bellowing cry.

While I did heed the advice to enjoy it, I also kind of worried about it too.

I was not sure if it was just the care-free personality of an easy-going baby or if Cayman's brain was not developed enough for her to understand how to voice herself.

When we moved into our house in March (the day before Cayman's first birthday), that was the first time she had a room of her own. It was an adjustment, not for Cayman, but for me to have her sleep a whole room away!

She had always slept in a bassinet, crib, or pack-n-play next to my side. But when we moved into our house, we finally had enough space to give her a room of her own. I set up the baby monitor in that empty space by my side.

Usually her sounds over the monitor in the morning were quiet and soft, not always enough to wake me, so I set my alarm clock for the same hour that Cayman typically woke up at, 7 a.m.

One morning, in the middle of April, I woke up and heard the tiny sounds over the monitor of Cayman rustling in her bed.

I pulled myself out from under the warm covers, visited the bathroom, and then headed to Cayman's room ready to greet my smiling baby.

But I did not find her smiling. I was devastated by the sight before me.

Cayman was laying on her back and she had vomited...a lot. Part of it was mucus and it was thick in her mouth, running out of her nose, and her hair was soaked in it. She was trying to rub it away from her face with the back of her hand but only smearing it into her eyes, causing them to water and become blood shot.

The image of her tiny frame looking up at me, so helpless, even now thinking back on it, makes me feel like I got the wind knocked out of me.

She never cried, so I do not know how long she laid like that. It could have been just a minute, or several minutes. But either way, it freaked me out.

Cayman was sick because her shunt had failed.

A couple days later when we brought her home from the hospital, the pack-n-play was set up next to my side again and that is where she has continued to sleep each night.

During the day, Cayman takes her naps in her room, but at night she's by my side.

Cayman is older and stronger now. She's mastered rolling and crying, which gives me some peace about her sleeping in her own room again, once I bring myself to part with her that is. It won't be today, maybe not tomorrow, but soon.

I pray I never find her like that again but if I do I think she'll cry out for me. And that is a milestone I cherish!

video, nap time

Today's video doesn't contain any new fancy milestones Cayman has achieved. I just think it is a really cute video, that's all.

The parts that are my favorite are:

Cayman's little grunts...

the way she slaps the bed with her hand...

and peeking through the crib railings...

The cool little light therapy box Cayman has is made by Homedics that Daddy found on Ebay for her.

The first time we saw this light box was during one of Cayman's hospital stays.

All the crib mobiles were being occupied at the time and we thought Cayman might be bored just laying in bed. So the hospital volunteer brought to her room a light box that looked just like this one for Cayman to play with. Which was way cooler than any mobile!

I'm not sure who had more fun playing with the light box, her parents or Cayman herself.

I just love it when Cayman pushes up her head as far as she can to get a peek out into her room.

video, therapy

Here's a video of Cayman 'working her stuff' at therapy this week.

video, "If You're Happy and You Know It..."

Today's video is Cayman performing to the song "If You're Happy and You Know It".

Posting a video of me singing for all to hear is something I thought I would never do but here it goes anyways...

video, koosh ball

Cayman seems to be over her tactile defensiveness. Most of her sensory aversions have been with her hands. She did not like to touch anything unfamiliar, temperature or texture different than what she already knew.

She is now open and willing to explore new things. And she's having a blast while doing it.

......................................................

***Cayman set a new P.R. (Personal Record) in sitting at therapy today. Approx. 2 minutes.

Video, banging two toys

Holding two toys, one in each hand, was always a real challenge for Cayman.

From the beginning, her doctor warned us, that with Cayman's brain injury, it would be a challenge for her to use both hands simultaneously. It could be years before she ever conquered such a task.

I cannot find the words that capture the depth of our excitement with Cayman's performance in this video...

Video, Belly Floor Scoot

Cayman has taken another leap in her development. She is doing new things and showing a greater understanding of the world around her. Mike and I have had a blast watching her.

To show you what I mean, I will be posting videos of Cayman this week.

The first video I share with you is Cayman's "belly floor scoot".

She no longer uses just rolling to get to where her heart desires. She now scoots on her belly too. She does this forward, even backwards, to the right, but never to the left. Our little running joke is she's like "Zoolander". You know, the character in that goofy movie about the male model that can't turn left.

Have a look...

Give Cayman a little bit of time and she soon has that box of toys looking like this...

Swinging with Daddy

So safe in Daddy's arms.

PonyTails

One morning, when I was combing Cayman's hair, I noticed how long it has grown.

"I wonder if I could get some ponies in there." I thought to myself.

Indeed, it is long enough!

Now it just needs to thicken up so the ponytails stay in for more than a few minutes.

"Uh-oh, I'm getting hungry, Mommy."

"This better be the last picture! My foot is beginning to look mighty tasty! "

"Seriously Mom, no more pictures!!"

Bummer...

Kids have gone back to school...

The weather is beginning to cool off...

The sun is setting sooner...

It seems that the dog days of summer are almost over.

Bummer!

Meet Jill and Matthew

***To read Jill's rendition of our time together click here.

A Good Day

Today is going to be a good day.

It is a day that has been marked on the calendar for the last couple weeks. I've looked at this day, counted down to this day, but quite honestly, have dreamed of it far longer than just the last two weeks.

Today I will drive to the airport and pick up my very good friend Jill and her son Matthew.

Matthew is only two months younger than Cayman and eye-catchingly handsome.

Jill and I love to joke and toss around the dreamy idea that someday Cayman and Matthew will marry and we will be in-laws to each other! We will be the kind of in-laws that will go shopping together, plan Saturday afternoon barbecues, and think of clever things to do that will drive our kids crazy.

The only problem is, Jill lives in Nebraska and I am in Ohio. So we have a few location details to work out but other than that we have decided that Matthew and Cayman are betrothed.

Listen to how perfect they are for each other...

Both were born with hydrocephalus and the most romantic part is Matthew has an extra pair of ribs and Cayman was born missing a pair. They are a perfect match!

In all seriousness, we do not know what the distant future will be like for our kiddos, but keeping room for silliness and "normal" dreams makes life fun.

When Jill and I "met", we were both pregnant with our hydrocephalic babies. We were walking the very scary and unknown future together. I have wondered at times, if it was harder for Jill because she is a labor and delivery nurse. Sometimes ignorance can be bliss.

But it was during those tough times, that our friendship was born. There is great camaraderie in pain.

I would not want to walk this journey without Jill's friendship. Her encouraging words, witty sense of humor, or just her listening ear has made my days brighter.

So what makes today more special than all of our days talking on the phone, emails, facebook chatting, or blogging?

Today, Jill and I get to finally meet face to face for the first time!

Yeah, it's going to be a good day!



***when I return I will share pictures!

Oh So Cute

Cayman is a little peanut. She's lean but long.

At 17 months old she can fit into a pair of size '9 months' jean shorts.

These little shorts are my favorite on her. I just love the way her chicken legs look in them.

Am I right when I say "Oh so cute!"?

Insurance Bills

Twenty-One Months Ago...

I became a patient of the High Risk Pregnancy department at South Bend Medical Hospital after discovering our precious baby girl would be born with hydrocephalus.

Twenty Months Ago...

our first of many insurance bills from the High Risk Pregnancy department began to roll in.

One Week Ago...

that first bill came for the last time!!

For almost two years we have been fighting the insurance company to pay for a very expensive bill that should have been covered under our plan.

For twenty months we kept receiving the same bill in the amount of $866.70.

For twenty months we kept appealing that same bill.

The site of that South Bend Medical Hospital's logo for almost two years, pushed me. It pushed me too far.

Normally I am very mild mannered and leave the confrontational calls to my husband. He naturally handles such matters with grace and wisdom.

But two months ago, when another bill from South Bend came in the mail, I decided that was enough! I was determined to get to the bottom of this.

I looked at little Cayman and said, "Mommy needs to learn how to handle these kind of things on my own!"

I picked up the phone, said a prayer, and dialed what was the first of many phone calls that have taken place between me and the doctor's office, me and the insurance company, and even a conference call between all three of us.

{Those three-way calls are interesting. I felt like I was on 'The View'...women talking all at once.}

After hours on the phone, over two pages of accurate note taking, and a new found confidence in myself, the insurance company paid their share of the bill!

I happily cut the doctor's office a check in the amount of $43.93.

My out-going mailbox!

"Good-bye forever pesky bill!!"

Father, Daughter Bonding

Daddy's favorite video game...

NCAA College Football

Daddy's favorite little girl...Cayman

Put them together and Daddy is as happy as he can be!

Adding to his pride, Cayman loves the video game too!

"Touchdown"!!


But when Cayman can't keep her little hands to herself, and messes up Daddy's game plays...

She's forced to play with her own controller.

Sitting, Part 5

We have been encouraging Cayman to reach the milestone of sitting unsupported since January. That is when she sat all by herself for the first time. It was only brief but it was long enough that she was proving her strength and ability to do it.

But then she regressed. She would cry and resist every time.

It's been a mystery.

We have done exercises, stretches, and massage. A set of x-rays were ordered and ruled out the theory of any spine or hip malformations.

So last week, I took Cayman to her first appointment with a chiropractor.

A low quality cell phone picture because I forgot my camera.

I was a little nervous about it. The thought of having her tiny spine manipulated made my own back cringe. But with everything else we have tried with little gain, I thought it was too important not to explore this modality for her.

The appointments have gone great. The doctor is a wonderful, gentle man. He talks to Cayman and watches that he gains her trust before he sets about his work.

He discovered the same shift in spine and hip alignment as Cayman's physical therapist did.

He uses a device called an activator to adjust Cayman's spine.
The activator is a tension rod with a rubber end. With a click of the release button the rubber end quickly, but gently delivers a light, controlled force to Cayman's spine.

At the first appointment, Cayman thought it was hilarious. The first click startled her, making her jump but then she laughed after each click of the activator, completely relieving mommy's jitters.

Cayman will continue to see the chiropractor a couple times a week and we are hopeful that it will help her become more comfortable in sitting unsupported.

........................................................

Cayman's physical therapist, Jodi, had a new idea on how to help Cayman sit independently.

A Benik trunk brace.

Front

Back

This brace was made for a little girl that out grew the need for it so the family donated it to the center. Jodi thought it looked like the right size for Cayman and it is!

I am so grateful to the family that donated it. These braces can come with a high price but because of their thoughtfulness Cayman can use their brace for free.

Since the addition of this new body brace and the chiropractic treatments, Cayman has sat independently for nearly 30 seconds. It has not been an event that she has duplicated again but we still count it as progress. And I even got it on video!

Here is Cayman's exciting progress in sitting...

sitting, Part I
sitting, Part II
sitting, Part III
sitting, Part IV

Teaching Cayman to Brush her Teeth

Does Cayman like getting her teeth brushed?

She likes it!

Oh wait, she doesn't like it!

So does she like it or doesn't she?

Who knows?!

She can change her mind as quick as a wink.

I am so thankful for that little mind.

"Thank You God!"