Work Day 1

Hop on over to my other blog to see the results from our first work day at our house.

Click here.

Home At Last!

Our decision to uproot our lives in Indiana to live close to family in Ohio almost 15 months ago was a perfect decision and we do not regret it for one second. To make that decision though called for us to embrace some uncomfortable living and financial situations for awhile. {Remember, we moved 3 times in one year. It was borderline insanity!}

Finally we have a home of our own that is near our families and a stable job for Mike that he enjoys.

I don't know how to fully explain what all this means to me!

It's a real chance to feel settled for the first time in our almost 5 years of marriage. My heart is pounding with joy! Not too long ago I thought this moment was still years away for us, but here we are today receiving the keys to our beautiful home sweet home.

It is truly the works of God. It's the only way I can explain why all this has unfolded so perfectly. Mike losing his job was God working out a better plan for us.

I am now going to spend the rest of my days soaking in this great feeling of being home.

Play Til You Drop

Napping after a busy afternoon of therapy evaluations {Speech, Occupational, and Physical Therapy}.

Mickey D's

On Saturday we enjoyed a fun afternoon at McDonald's Play Zone with Cayman's cousins Sidney and CeCe.

Cayman tried a taste of a french fry...it was just Ok.

She really liked the ice cream...

but her absolute favorite was cuddling with Grandma Sue.

Helmets Aren't Awkward if You're on a Bike

Cayman's helmet has created quite an awkward experience for many people when we go out.

I miss the oooh's and aww's I use to receive. When I would be at the grocery store, there were a lot a smiles from people when they saw the car seat in the shopping cart. On their way passing by they would peek around to view the baby inside...and immediately "Awww".

We had reached a point where I felt "normal" to be viewed. Cayman's hair had grown out and elegantly hid her shunt. I had made many stylish hats that match Cayman's outfits. Most people just passing by had no idea of Cayman's diagnosis. And it felt good to be treated "normal".

For the first several months after Cayman was born I did not receive many of the excited shrills from people that I had seen other mom's experience when they just had a newborn. It broke my heart. I was such a proud mama and wanted to show off my baby.

Being a first time mom, I have really appreciated getting the chance to know what it feels like to be treated "normal" and have people oooh and awww over my baby. I did not fully realize how special that was to me until now.

I still receive smiles when people see the car seat but once they peek inside and see a baby wearing a funny looking helmet, they quickly turn away as if they just looked at something they were not suppose to.

No more oooh's and awww's.

People seem afraid to approach a different situation. I think people have good intentions. At least that is what I like to believe. I think people are afraid of offending so they don't step forward and take a risk.

We attended a new church this morning. After the service an older woman came up to us and these were her words, "I see your baby is wearing a helmet. What is her problem?"

I seriously felt like hugging the woman!! I am sure there are many other ways she could have worded the question more compassionately, but I truly truly appreciated the acknowledgement. Experiencing people's avoidance has been tough to bear.

I shared my heavy heart with Mike tonight and he made a valuable point that comforted me.

He said, "Perhaps it's good for us to be experiencing this now, while Cayman is still too young to fully understand. It will help us learn how to manage these kind of situations and be able to teach Cayman how to handle it when she's older."

That's true.

I am so grateful for my sweet husband, my dearest friend.

Cayman's Naturopathic Doctor

I have spent days...maybe weeks...thinking about this post and what to write. For quite some time I have been wanting to share our experience we have had with the Naturopathic Doctor we take Cayman to. The homeopathic approach to illness is a less traveled road and many are skeptical of it so I have wanted to choose my words perfectly.

Also, because the FDA does not approve of this approach to health it is bound by law that it cannot be said it diagnose, cures or prevents disease or other medical problems. So the information I share with you is for education purposes only and for sharing our life experience. It is not intended to substitute medical advice or treatment.

I do not profess to be an expert at explaining this very detailed field of alternative medicine but I will do my best to relay the information I have learned.

Some call it Naturopathy, Homeopathic, Holistic, Alternative medicine. It all means using a treatment of disease by the use of natural agents (vitamins, herbs, minerals, supplements, etc).

God made the body to be healthy. He made our bodies with their own ability to heal themselves but at times it just needs help in performing that job. When our immune system is weakened the body has difficulty healing itself and that is when we start to see symptoms, disease, and stress arise.

A specific prescription drug or a homeopathic remedy may be recommended for the same purpose but they get the job done in very different ways.

A drug goes in and does the work for the body. There's drugs for regulating blood pressure, cholesterol, seizures, depression, insulin, etc. A person may need that drug for the rest of their life to keep their condition under control. Generally, pharmaceutical drugs knock down the symptoms, but does not fix the root of the problem.

The focus of a homeopathic remedy is not on suppressing the symptoms, but healing the source of the problem. They "teach" the body what it was originally designed to do, which heals the body, so it's healthier and performing at its top best without the harmful side effects of drugs.

God answers our prayers in many ways. Sometimes He reaches down with His own hand and performs the healing Himself. Other times He calls someone else to be an instrument of healing for Him.

Cayman's Naturopathic Doctor, Greg Saunders, has been an answer to our prayers. I wish every person that is fighting for their health could go to this amazing man. There definitely needs to be more people in this world with his talent and ability. Myself or another member of my family have seen other Naturopathic Doctors in the past but, always in the end, we found ourselves back in Greg's office, simply because he's the best. We see results with him. Greg's knowledge and experience is profound.

I have known Greg for many years. I had not seen him for awhile but desperately found myself back in his office after Cayman's diagnosis when I was 22 weeks pregnant. I gave him the full story. He ran a scan on me and it pretty much confirmed every diagnosis in Cayman's body. It also confirmed I was indeed having a girl! I thought that was kind of cool that it can reveal every detail.

Cayman's condition could not be undone but Greg's goal was to help both Cayman and I have the best health possible. It was comforting to be doing something, anything, to potentially help Cayman.

I find it astounding with all of the anomalies she was born with, her apgar scores were 8/9. The medical team was amazed at how alert and responsive she was.

I think it is all because of Greg's guidance, the answer to our prayers.

Cayman was about a month and half old when we took her to Greg for the first time outside of me. It was very important to us to take her to him shortly after her stem cell infusion at Duke University. We wanted those cells to be able to work and repair to the best of their ability. Our thinking was, get her body working at its top best, and the cells would be most effective. Greg is the one I most trust to make that happen. So just a week after getting back from Duke we took Cayman to Greg. Since then Cayman has been off all prescription drugs, which is another part of her story that her medical providers marvel over.

In July of '08 Cayman had her second appointment with Greg. We were deeply concerned about her shunt. About every month she was in surgery for a shunt revision. Her neurosurgeon said it was the proteins in her body that were plugging the shunt. We took that information to Greg and he gave us a recommendation for a supplement and Cayman has not needed a shunt revision since.

Also, we have spoke with him about our fear of seizures which he could see on Cayman's body scan she was already having minor ones. From the first appointment he recommended certain remedies for preventing them and thus far Cayman has not had any seizures.

Doctors have said, "This baby might not live, she might not see, hear, talk, walk, learn, etc." Greg has always told us with such confidence, "Sure she will."

Cayman receives so much love by the whole staff at Greg's office. We look forward to these appointments that take place about every 3-4 months.

Cayman, very likely, will be compromised in life but I am convinced that if there is something out there that can give her a fighting chance at the best quality of life it is the guidance of Greg Saunders...

the answer to our prayers.

I keep all of Cayman's supplements in this bag. It makes it easy to grab and go if we are going to be gone all day. Most of the homeopathic drops she receives 3 times a day.
The drops have a very strong bitter taste. Many of the drops contain alcohol which help preserve the shelf life of the remedy and opens up the taste buds for better absorption but it burns in the mouth. If you have ever swished with mouth wash that contains alcohol it's that kind of burn. Trying to get a baby to take such nasty tasting stuff can be quite a challenge. So this is how we have overcome that; I dispense the recommended dose of each remedy into a shot glass (yeah, that's the humor of it). It has to be glass or plastic, never metal. Somehow metal disrupts the strength of the remedy. Sometimes I add just a little bit of water to the drops to help dilute the bad flavor. It has to be good water, never water from the tap. Then I set the timer for 15 minutes. In those 15 minutes the alcohol evaporates off, eliminating the burn sensation in the mouth.
I suck up the drops from the shot glass into a syringe. I then squirt them into Cayman's mouth and watch her make her adorable gross-face expressions.

Helmet

Cayman's 2nd helmet fitting yesterday was successful. She now has her pretty pink helmet and does not mind wearing it too bad. She gets a little fussy sometimes but we are working up to it. Over the next week she only has to wear it part time, increasing the hours during the day til she is wearing it a full 23 hours each day.

Last night Cayman wore it to bed and it did not disrupt her sleep. I am very grateful for that.

She tires out more quickly but she maintains her head control well while wearing it. I am also very grateful for that. I do not want the helmet to slow her down.Cayman is not the only one adjusting to her helmet. Mike and I are too. Our cuddle times with Cayman feel so different. Over the last months we have spent a lot of time rubbing Cayman's head, stroking her hair, and kissing her forehead. It's not quite the same feeling placing your cheek against a cold plastic helmet, but I can guarantee that will not stop us from cuddling. She is such a snuggle bug. In this picture you can see Cayman's first tooth (it's on the bottom). She's already working on popping through her second.

11 Months Old...and a couple days

Every month I take a picture of Cayman laying on this bunny (a gift from her Great Aunt Linda and Uncle Martin). It has been a perfect way to capture how much she has grown over the months.

See...
11 Months Old

4 Months Old

Helmet Fitting A No Go

Cayman was suppose to get her helmet yesterday. We went all the way to Ann Arbor for her appointment to find out the helmet needs to be revamped so that it stays perfectly clear of her shunt. The clinician was very nice and worked hard to remold the foam to lift the helmet away from the shunt but after many tries he still felt nervous about it. So it's back to the drawing board.

I did not get a great picture of Cayman in her pink helmet, but here's what it looks like. I think she's cute!
Also here's a video of Cayman clapping. She will never cease to amaze us at how well both sides of her brain work together. It's simply a miracle! (Remember, she's missing that middle portion that connects the two halves of her brain.)

Happy Birthday Blog

Happy Birthday to my blog!

One year ago today, I sat at my computer desk in my in-laws basement and created this blog.

I am thankful that I did. I have met and connected with so many families because of it. People sharing their thoughts, prayers, and care for us has touched and changed my life.

The blog has been a perfect way for me to record my feelings and happenings, which has been great therapy for me.

At the time, I had no idea that this blog would become such a big part of my life. This past year's journey has been full of so many sad moments and happy ones too. I am glad to have it all documented.

So on a day like today I can go back and read what I was feeling one year ago and be completely reminded of how far we have come...how far God has brought us.

My strength and understanding how good and faithful God is has bumped itself up to a whole new level. I was fearful and uncertain about so many things and how they would turn out. But everything is more beautiful than my mind's imagination could stretch. God was working a story and a plan in our lives much greater than what we could author. At times when we were hurting the most, we looked to Heaven and asked if He was still watching over us. I see now, God never turned His back to us. And He never will.

Do I think God could have healed Cayman and just called it a day? I absolutely do. Do I ever wish things were different? Sometimes. Do I want Him to be glorified more than I want things changed? Yes I do. Suffering in vain is the real tragedy.

To read my very first blog entry click here.

11 Months Old!!

Cayman is 11 months old today!!

A picture photo shoot soon to come!

One of My Most Favorite Sounds

I can't imagine a better way to share my 300th post with you than to share the sweet sound of Cayman's laugh. Not only does she find tearing paper funny, she now finds her Daddy hilarious too.

Just to Clarify

I want to stress a very important point that I'm not sure was clear in my recent post What Should I Say?.

Mike and I never took offense to anything that was spoken to us even if it did not quite come out right. We knew the heart of each person. We knew they were offering us support and that meant so much.

I wrote that post simply because it's a question that keeps popping up. Like I said before, I do not know if I have the answer. I no way feel I am full of wisdom but I do think there are definitely better ways to say things.

I enjoyed reading the responses and getting a more in depth perception of what goes through our minds during such a time.

I was fearful, that after reading that post people might be thinking, "Oh crap! Was that me? Did I say that to them?" It's really not a situation like that. We have never been angry with anyone and we love all of you!

*hugs*

Little Mirror

Cayman loves this little compact mirror. It came in a toy purse that she got for Christmas from Grandma Sue and Grandpa.

Mostly she chews on it, but lately she has started to look into the mirror as well.

The first day she did this, Cayman was quite occupied chewing on her mirror and gazing into it at the same time she did not notice me standing next to her. I peeked over top of her til I could view Cayman's image in the mirror and my image was reflected back to her. I held that pose with an anticipating smile on my face waiting to see if Cayman would figure it out that she was viewing me in the mirror. She intently and very seriously stared into the mirror, then suddenly burst out laughing.

I guess she figured it out!

What Should I Say?

A few months back, Mike and I were approached by a couple asking for advice on what to say to their friends that were about to have a baby born with a pretty serious diagnosis.

That's a good question.

I'm not sure if I have the answer or even if there really is an answer. I have some thoughts...mostly things that I liked what people had said to me and how they treated me. I also could make a list of things that I did not like said.

I realize in tough situations, each person grieves and processes differently. So my thoughts may apply to the next person or they may not. That right there is why you should never judge. To each, their own.

The only behavior I feel is unacceptable in your grief process is if you're hurting yourself or other people.

In our time of grief, Mike and I promised to stay kind to each other even at the height of our stress level. That can be difficult to do when a person is sleep deprived and stressed but it's so important. We weren't perfect at it, but it's a situation that doesn't require perfection in order to do a good job. There were times we spoke to each other more harshly than intended but we were quick to realize our wrong and quick to forgive each other. A simple, "I'm sorry, let me change the way I said that." is all it would take to restore the love.

Probably the one phrase Mike and I heard the most when I was pregnant was: "God does not give you more than you can handle." We got so tired of hearing this!! If that is true, that God does not give more than we can bear, then we felt we were maxed out. He better not dish out anymore.

Another phrase I heard that I did not like was, "you must be such a strong person for God to allow this to happen to you." My response to that was, "Well then I wish God would look upon me as weak."

I really appreciated the times when people affirmed my feelings. I felt encouraged and supported, not judged by that. One woman said to me, "I have thought about the fact that this must be extra scary for you, with Cayman being your first child." That was true and something I had not shared a lot about. When my feelings were affirmed I felt safe and found great comfort in talking with someone that listened with a non-judging ear.

A lot of people seem to fall under the assumption that they need to say something positive that will ease the burden. There is nothing that can ease the pain.

I always appreciated the people that found a healthy balance between not making light of the situation while not handing out pity either. I understand that that is a fine line. They were the people I felt the most safe with. It was scary for me to leave the house and be around people after word of Cayman's diagnosis was out. I didn't want to be stared at, picked over, evaluated, and discussed. It bothered me when I could obviously see people steer clear of my presence because they didn't know what to say. It was yet another reminder of our sad news.

I enjoyed receiving hugs and compassionate smiles...oh and I can't forget the cards that were sent in the mail. I'm a sucker for good 'ol fashion snail mail! I feel loved every time!!

Well that's about all my thoughts for now. There's lots more that keep coming to mind but really there's one staple you can always fall on that is right, and that is be a non-judgmental ear.

***To my readers that have been in a situation of grief, do you have anything you would add of what you liked and/or did not like said to you?

Bryson Needs Your Prayers

This beautiful little guy is Bryson. He's 4 months old. I heard about him just this morning. Bryson has been diagnosed with cancer. The tumor is so large on his kidney that they have to shrink it with chemo before they can remove it. Overall the preliminary report does not look good. My heart just breaks for this family. I feel my spirit in constant prayer for them.

I call on you my precious prayer warriors. Cayman has been surrounded by your faithful prayers for so long and I marvel everyday over the miracle that she is. Will you please pray for Bryson too? And his parents. It must feel like they are caught in a nightmare they can't wake up from.

Thank you!

The Super Bowl

Thanks to "Aunt" Tammi, Cayman was an Arizona Cardinals fan!