Extra info...

I just wanted to let everyone know that we are not giving up on Olivia. No one has accused us of doing that, it's just that I felt like I should address it so that we can express how we feel. Our neurologist wanted to gently steer us towards having to decide about making her a DNR in the future. We would never let her "live" in a vegetative state with no quality of life. I have the highest regard for life. Unborn life all the way through a dignified death. It probably comes from my years as a hospice nurse. For anyone who did not see the info on her disease I will re-post it here.

There is no cure and so far no real treatments. Seizure meds and Neurontin for her nerve pain is all we can do for now. Eventually her seizure meds won't work. We hold out all HOPE that God will cure her and she can live a full life!

December 2009 Update

Not much good news to report. Olivia is still her spunky self. Trying to play with the other kids and just be "normal" but unfortunately her body will not cooperate. We met with her neurologist today. She feels that at some point this fall or early winter she had another metabolic stroke and that is why her left hand is so contracted (she keeps it balled up in a fist). There was not one event like the first stroke when we felt like one side was worse than the other etc. She also witnessed her having constant head drop seizures and stated that it's possible Olivia has literally thousands of seizures in a 24 hour period. She is getting so weak that she needs constant care. We are going to try and apply for nursing care at home for her.

Dr. Chadahumbe is preparing us for the worst after seeing her constant decline. Rick and are are trying to wrap our mind around the fact that one of these times she will start to have seizures that we cannot stop. We will take her to the hospital where they will load her with IV seizures meds which will cause her to go into a med induced coma and the chances of her coming out of it are slim to none. She is just too weak.

We are going to do our best to enjoy her for as long as God will let us. We plan to have a wonderful Christmas with the understanding that one day she will be free to run and play without seizures.

New Pictures of Olivia!

My cousin Nicole from Aspire Studio took these beautiful pictures. Aren't they great?!

MEOW!

Olivia was a black cat this year. She had fuzzy ears, a cat shirt and a tail. At first she was upset because she did not have a real costume to put on, until I painted whiskers on her face. Next year I will try and work harder to find something that she can wear that still allows us to strap her in her chair. We put her "tail" in her chair and she really liked that. We went to the mall to walk around and trick or treat. Olivia kept yelling out "MEOW" to everyone. It was pretty funny.

Random Wish Trip pictures

Olivia watching the "fairy" take her star away to put on the ceiling.

The girls on our last night in their Ariel dresses.

Kenton playing with his "friend" in the mirror.

Disney

Hugging Pooh

Tired at the end of the day!

Isaac and Kenton

Mama and her girls at the "Twinkle La Ti Da Spa"

Isaac getting his"tattoo"

Olivia getting her "makeup" on.

Justin and Logan getting their "tattoos"

Meeting Goofy. Notice how long Olivia's hair is getting?

Logan with glasses he won.

Some kids were tired on the trip home in the RV.

We're Home!

We are back home and exhausted. Olivia had such a wonderful time. We have so much to share. Sorry I couldn't update on the road. They only had WIFI in the lobby and I never made it up there. I'll be working on some posts. Here are some pics to start with:

Tired after a day at Disney

Meeting Mary Poppins

Hugging her dog from her arrival presents.

Follow Olivia's WISH!!

Tomorrow night we will pick up the RV and head out for Florida during the middle of the night while the kids are sleeping. Yesterday Olivia's box from Make A Wish arrived with all of our goodies in it. Olivia especially liked her Make A Wish Barbie! She wore her shirt to school today. Thank you to Erica who is our wish manager that coordinated the RV rental and all of the little details! We are so grateful. Don't forget to check in every day to see new pictures. We may not be able to update until Saturday night, unless we stop somewhere with WIFI before Give Kids the World.

Olivia gets to ride a bike at school!

Olivia's physical therapist at school "Mrs. Gallery" was able to get a bike from Ambucs for Olivia to ride at school for exercise. She loves it and gets to ride it in the halls for recess when the weather is bad outside. We are so happy that she has it. This fall we are going to apply to Ambucs to see if she can qualify for a free bike. They sponsor children with disabilities who cannot afford to purchase an expensive bike like this one.

Changes for Olivia

Olivia has started first grade! She loves school and is doing really well. Her health has been great for the past two weeks with virtually no seizure activity! Praise God! We continue to pray that she will stay in good health for her trip to Disney that is coming up October 1st!

She is wearing her new helmet and her new leg braces. She loves the braces for her feet because they have flowers and butterflies on them. Her helmet has also protected her face from many forward falls already.

Olivia is doing really well in Math and is so excited that she gets to ride a bike at school every day! Thank you Miss Gallery! Olivia loves her new teacher Miss Cumming and of course her helper and good friend Mrs. Gruppen! We are so thankful that everyone at school is so kind and takes great care of Olivia.

Early July 2009

Olivia is doing pretty well. She is finally enjoying her summer break. We have seen such a decline in her ability to get around from last year but she doesn't give up. She has been playing in the sprinkler, kiddie pool and the new Slip N Slide.

We are counting down to October for our trip to Disney. I have been purchasing special clothing for her to wear. I'm also working on getting a special custom made necklace for Olivia, Savanna and myself to wear. I will post about them after the girls get them.

Enjoying Summer

Olivia has been doing a little bit better this week. We are taking her for her new helmet fitting this week and we just found out today that she is going to be getting "AFO's" or Ankle-foot orthoses to help strengthen her legs. We're so happy that she is getting them and hope they will help her. She is losing tone in her muscles and is finding it harder and harder to walk.

She has been complaining that her teeth hurt when drinking or eating cold items so I'm going to get her in to see the dentist. I suspect that chewing all of her hundreds of pills a month are breaking down the enamel on her teeth. Until we see what the dentist recommends, I purchased a mortar and pestle to grind her pills down to a powder and give them to her in a liquid. I also bought a toothpaste for sensitive teeth.

She is enjoying the summer and likes to swim in the little pool- especially when I let them put bubbles in it. She likes staying up later and watching Dora on DVD. What's funny is that she is MORE anxious about getting BACK to school and can't wait for it to start! She is looking forward to taking a "lunch box" this year instead of hot lunch.

June 2009 Updates

Poor Olivia has had a rough summer so far. She's had daily head drop seizures in spite of three med increases. The med changes have made her even more unsteady than she was and also sleepy. A week ago she was coming down the basement stairs without waiting for me to help her and had a drop seizure. She fell from the last step right flat on her face. Isaac ran up to get me and I nearly had a heart attack when I found her. We had just gotten an order for a new helmet with a face guard a few days before this happened but it takes weeks to get insurance approval.
We struggle everyday with how to balance her safety without locking her up in her stroller and breaking her spirit. We truly believe that if Olivia cannot at least try to run and play with the other kids that she will give up the fight. It makes us so sad. All she wants out of life is to be able to play and read like a normal kid. Please keep her in your prayers as the summer is usually her best time of the year.

Olivia a week after her fall, doing her "bead work".

On a good note, she is enjoying playing in our new sand box and swimming in the pool. She also loves to do her "homework" daily and spends an hour at a time coloring everything just so. We are planning for her big "Wish" in October where we will all be going to Disney. We found out that Make A Wish was able to rent an RV for us to drive down and back in. Our whole family is looking forward to it. I can't say enough good things about Make A Wish and will be forever grateful to them.

Proof of God Through Olivia

Olivia after returning to our home.

Our family feels like we have experienced a miracle through Olivia that cannot be explained. Rick and I have debated whether we should write this down before we forget some of the details and so I decided to write it down.


The background:
First some background so you can understand the story better. Olivia was diagnosed with epilepsy at 22 months old. Since then she has had a spiral of events happen to her including a stroke, several long stays in the hospital and her diagnosis of Alpers' Disease which have all taken a toll on her brain. Olivia came to live with us at 22 months old while her mom Katie (my sister) was battling her personal demons. We became Olivia's legal guardian and she lived with us until May of 2006 when her mom was able to take her back into her home. Katie and the children were abused mentally and physically by Katie's boyfriend until October 23, 2006 when Katie was killed. Olivia found her and watched as the paramedics worked to try and revive her. When we brought her back home she had terrible night terrors for several weeks (we thought) where she would wake up screaming "My mom. my mom".

Katie is buried about 15 minutes from our house in the little town of Dorr, Michigan. The cemetery is called the "Dorr Cemetary". Olivia did not attend the funeral because she was too young, too fragile to understand. Olivia is behind her peers in some areas and fairly appropriate in other ways. She has a very innocent mind and when she tells a lie it's usually obvious to tell that she is lying. It would be something like "Olivia did you take that cookie?" She would say "No- not me" while giggling with her hand behind her back. She just doesn't have the mental capacity to come up with an elaborate story.

There was one detail that bothered me so deeply beside the obvious loss of my sister forever and that was the fact that her purse was missing. The boyfriend had cleaned the apartment out of everything of value; we are assuming while Katie lay dying because they were able to get a small heartbeat back on her and the coroner stated if they had called 911 sooner she may have lived.
I was terribly disturbed by this for some reason that I can't explain. I feel as a woman that my purse says everything about me. It was missing and no one ever found it. The children's Social Security cards, their medicaid cards, her wallet with any money that she may have had, her keys- just anything that was hers was gone! I told everyone how upset I was about it and could not get it out of my mind.

I have only been to the Dorr Cemetery twice since Katie died and my mom has not been able to go there even once. It's just too hard for us. My mom avoided driving through Dorr for months and months afterward.

The Story:
One afternoon Rick and I were driving through Dorr with the kids to go to Grand Rapids and as we passed the Dorr Cemetery Olivia stated "Hey- my mom lives there! My mom lives there!" The hair stood up on my neck and arms. I looked at Rick and asked him if he heard her? He said to me "She said the same thing a week or so ago when I took her to a doctors appointment but I didn't know she was pointing to the cemetery until now."

I immediately called my mom & step dad to see if they had taken Olivia there. My mom stated "Of course not, I have not been there yet since Katie died and I haven't even driven through Dorr"
Next I called my dad and step mom. Same thing- they never took Olivia there or drove past it with her.
Next I called my step sister and step brothers. No one went there or drove past there with her.
In fact the no one had taken Olivia anywhere except us since her mom died at that point.

We could not explain how Olivia knew that her mom was buried there. No one to this day can explain to us how she knew her mom was there. She has no understanding of what a cemetery is and has no idea where Dorr even is. There IS NO EXPLANATION for it!

We asked Olivia how she knew where her mom lived now. She looked at us like "Duh, don't you know?" She stated plainly "She comes and gets me." We said "How does she come and get you?" She stated "She comes and talks with me and takes me with her when I am sleeping"

A few weeks later she had her last dream where she woke up crying. The next morning we asked her what she was dreaming about and she stated "My mom has a new room and only I can go there- no one else, just me and mom; and mom showed me her new purse."

She stopped waking at night and did not mention it anymore. Two years later on Memorial day was the first time we took the kids to the cemetery. Olivia walked all around and seemed to have no understanding of what the place was and never mentioned anything about her mom. We tried to explain to her that Katie was buried there but she did not seem to get it. We asked her if she has ever been there or remembers that place and she said "No".

I'm sure for someone reading this it may not sound as miraculous as it did to us. For someone who doesn't know Olivia in person it may seem like "Wow, that's a great story but probably not true." I understand, I would probably think that way too, but for our family, we cannot explain how she knew her mom was buried there and we cannot explain how Olivia knew about her mom's purse being gone. We never talked about any of those details anywhere near her.

As a family we have come to the conclusion that no matter what some may say about it, we feel that God allowed Katie to have contact with Olivia to help her. Even if Olivia came up with these dreams on her own to soothe herself after her mom's death, it does not explain how she knew where her mom was buried. She can barely tell you her address- and that's on a good day. Praise God for working in mysterious ways!

April Update

Not much new to report. Our family has been very sick with the stomach flu. Olivia had it for one day, but has complained of stomach aches for several days without getting sick. Olivia also had a bad cold before the stomach flu and I had a bad case of regular influenza (no not the swine flu) which I hope she is not coming down with. She has an appointment with an ophthalmologist next week and her neurologist May 14th...

Olivia's Birthday History!

Olivia's birthday history starting from her 1st birthday at the bottom and going up to her current one. I haven't found the disk with her third birthday party yet. She had that party at a pizza place.  

 Olivia's 10th Birthday (Madeline) Party!

Olivia's 9th Birthday was just awful. She was in the hospital with seizures and on the ventilator.

 

 Olivia age 9

 Olivia's 8th Birthday!

Seventh Birthday:

Sixth birthday party had a daisy/flower theme:

Fifth birthday was a Dora theme of course!

Fourth Birthday picture with Great Grandma DeKraker:

Second Birthday

First Birthday! She had her own chocolate cake.