Olivia's Hope

June 2011 Updates

2011-06-08T20:13:00.002-04:00

Olivia has had a wild spring so far. She actually had a moderate winter with only a few infections. In February she was not doing well again with tons of drop seizures. She was admitted to the hospital in March for seizures that we couldn't stop. The IV meds along with her sleep apnea sent her into pulmonary edema with some blood in her lungs. She had to go on the ventilator on her birthday of all days! It was the worst day!! She was able to come home a few days later and has been doing pretty good. She is slowly losing her muscle control and we are unable to keep her safe unless she is in her wheelchair. It's very sad for us because it really breaks her spirit a bit. We appreciate all of the prayers and ask that everyone continues to think of Olivia.

Oldies of Olivia

2011-03-20T17:01:00.002-04:00

January 2011 and 2010 Summary

2011-01-29T17:14:00.002-05:00

Hello friends and family. Sorry I have neglected Olivia's blog for so long. The good news is that she has been doing really well so far this winter and so there is not a lot of news. Olivia was able to return to school at the end of September. She is attending a new school in Holland and it is a great fit for her. She really loves going to school.

We were able to take her off of the full Hospice program and return her to the Hospice Pediatric Early Care Program. Hospice of Michigan is a wonderful organization and I'm not just saying that because I worked there for years. ;-) Seriously, our nurse Jill lives near us and would help us with anything day or night. Our social worker Sheila has been a huge cheerleader for us. Sheila did a beautiful hand cast of Olivia's hand for us and arranged for us to go to the circus and sit in a private booth upstairs. We also attended the Hospice birthday party and got to meet Duff Goldman from Ace of Cakes.

Olivia's health has been up and down but mostly stable. Her hair has begun growing back after her last metabolic stroke. Please keep her in your prayers that she will continue to be healthy. Olivia was also baptized along with all the children in September 2010. It was such a nice day for us. Thanks everyone for your support.

Hospice Care

2010-08-28T10:12:00.005-04:00

It's with heavy hearts that we are letting all of our friends and family know that we will be starting Hospice for Olivia on Monday. This is the program we have chosen. The last few days she has really perked up and we sometimes question if the timing is right but in the end we think it's better to be prepared. Only God knows her true time line. There is no urgency right now but her breathing at night is very erratic. Her neurologist feels that her disease and constant seizure activity has begun to break down her Cerebrum which is the center of function in the brain. At this point we are not enrolling her in school and we are keeping her home with us. If you would like to visit with Olivia and help keep her entertained (she is mostly confined to her wheelchair now) then give us a call. Please keep Olivia in your thoughts and prayers. Thanks. Kelly

Olivia Update August 22, 2010

2010-08-22T20:03:00.000-04:00

Olivia is doing well. She had a rough weekend as we are adjusting her medications. She is still weak and tired. We have had to help her eat, plus she has been in her wheelchair more often now than not. Here is a picture of her sleeping in the hospital while we were waiting to be discharged. She got a new pig from the book/show "Olivia". Notice she did not let go of her balloon while sleeping. Smile.

Hospital update 8/16/10

2010-08-16T21:55:00.002-04:00

Thank you to everyone for your prayers and well wishes for Olivia. Yesterday she began vomiting several times in a short period, she had right sided weakness and drooling. We had a feeling she might be having a metabolic stroke again. She could move all of her extremities but could not talk when I arrived at the ER with her.
By the time we were moved up to her room, she was doing pretty well. She had to have an IV dose of phenobarbital which made her breathing really rough during the night. A few times the whole team had to come in and we nearly had to put her on the ventilator to help her breathe. Luckily God was watching her and we made it through the night until some of the meds could wear off.
Today she has been stable and they are doing a continuous EEG to see what kind of seizure activity is going on. Hopefully she will be released tomorrow. Keep her in your thoughts and prayers please because it really helps. Thanks. Kelly
PS here is more info on a metabolic stroke.

Olivia's New Ride!

2010-06-02T23:57:00.004-04:00

Olivia loves her new wheelchair. We haven't come up with a name for it yet. Yes, her stroller and walker have names thanks to her teachers. Smile. The stroller is "the blue racer" or her personal one is "the pink racer" and her walker is "hot wheels". Help us come up with a cool name for her new chair.
More updates will be coming. She will be starting a new program this summer where she can swim and ride horses! We're so excited for her. The greatest part of having her new chair is that she does not have to wear her helmet to be safe and we can see her face again! Yeah!

Olivia Turns Eight!!

2010-04-01T13:28:00.000-04:00

January 2010 update

2010-01-10T22:04:00.006-05:00

Olivia had a rough November/ December 2009. She missed almost the entire month of school. She must have suffered another stroke or many strokes between October and December. They are considered metabolic (the body attacking itself) and there is no treatment for it. During December her left hand became very contracted and she kept it balled up like you see in the picture. We had to carry her and feed her. We were starting to prepare ourselves for the decline and look into getting nursing care. Just when we were starting to lose hope, Olivia did one of her famous rallies. She started to perk up shortly before Christmas. So far in January she is doing pretty well and recovering. She is back at school and walking well at home.

December 2009- note her left hand.

January 2010

Christmas 2009

Extra info...

2009-12-11T08:21:00.005-05:00

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

2009-12-10T18:33:00.007-05:00

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!

2009-11-20T15:17:00.008-05:00

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

MEOW!

2009-11-01T22:21:00.006-05:00

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

2009-10-19T22:35:00.022-04:00

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!

2009-10-10T10:55:00.007-04:00

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!!

2009-09-29T16:49:00.009-04:00

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!

2009-09-28T16:09:00.006-04:00

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

2009-09-22T23:10:00.006-04:00

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

2009-07-17T22:53:00.000-04:00

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

2009-07-07T23:30:00.000-04:00

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

2009-06-29T21:54:00.000-04:00

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

2009-05-08T23:32:00.000-04:00

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

2009-04-28T23:10:00.001-04:00

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...

Random birthday pictures:

2009-03-19T23:38:00.000-04:00

Here are some birthday photos of Olivia since she turned SEVEN today. I am missing her third birthday photos because I haven't found that disk yet. We are counting down from age seven to her first:

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.

School Smart Program

2009-03-18T00:39:00.000-04:00

Did you know if your child suffers from epilepsy that there are free programs from your local Epilepsy Foundation Center that can help teach students and staff about seizures and treatments. Here is our local Michigan chapter for infomation.

Purple Day

2009-03-18T00:32:00.000-04:00

March 26th is purple day in support of epilepsy. We are going to try to do a post and link Olivia's blog to their website which was started by a nine year old girl with epilepsy. You can read about it here.

Home again.

2009-03-13T22:48:00.000-04:00

Olivia was able to return home this afternoon. She has had a good night. The twitching has stopped but she still can't walk very well. Rick and the nurse helped her take a bath this morning so she came home with a few pony tails in her hair which she loved. She also got a Dora memory game, a teddy bear and some spinning tops which she had to show mom right away. We are optimistic that she can return to school next week.

She was so pleased that her teachers came to visit her that she was in awe all afternoon and grinning from ear to ear! She loves her teachers and LOVES school! Thanks for visiting her!

Starting to improve today.

2009-03-12T21:31:00.000-04:00

The only new thing to report is that she had a fairly good and uneventful day! They gave her IV meds early this morning for the seizure activity and it stopped them but made her very tired. She has slept most of the day and will probably be able to go home tomorrow morning. Thank you everyone for your prayers and kind words for Olivia. We really feel that it helps her to heal!

Rick spoke with one of the neurologists today and we found out two good points. #1 is that they do have a couple of patients with this diagnosis. One is 14 and the other 20, so it is possible to do well and much of it depends on the patient and their own symptoms. #2 is the fact that she does not have any liver problems is a big plus. Many of the kids who do not do well start out with poor liver function.

We are taking every day only one day at a time and praise God for each one that we are given!

Terrible News!

2009-03-11T21:28:00.000-04:00

First Olivia is not doing well today and for the past few days. She has been terribly twitchy and we are not sure why. It started out with her complaining of pain in her foot. We are not sure if she twisted it wrong or if it's neurological pain. This afternoon her twitching became much worse and we knew we had to take her in to the hospital. We called the neurologist to try and get a direct admit rather than going in through the ER. I knew something was up when our neurologist called us back instead of the on call neurologist.

Olivia has tested positive for a terrible genetic disorder called POLG1 or Alpers' Disease. Most of the children do not live past age 10. It's a very progressive and degenerative disease. We are also worried because she has been complaining with her last few flare-ups of not being able to see and blindness is one of the possible effects of this disease. We are just so upset and sad for her.

We also found out that she apparently has some sort of a defect in her mitochondria that they have never seen before. As in EVER. No one else in the world has it because they have never seen that mutation before. I'm not sure yet what all of that means.

We could use prayers for Olivia and for our family tonight. She is at Helen Devos Children's Hospital. They are starting phenobarbital to try and stop the twitching/seizure activity.
I will keep you updated as we know anything.

There is a link about her disease here.

Not much to report...

2009-03-05T23:16:00.000-05:00

Olivia has been doing pretty good this week. She was able to go back to school and have a good week. Wednesday she had another MRI with sedation that went well. We don't expect to find anything out for a week or so. Olivia is getting ready to have her birthday party soon (19th). She wants another Dora party. We are going to try to do something extra special this year and take a couple of her friends to Build A Bear in the mall and then to have pizza.

Make A Wish Foundation is in the process of setting her wish to go to Disney up for us. We had requested to try and rent an RV instead of flying down to Florida so that is what they are going to work on. We are trying to go in early October. We will be staying at the "Give the Kids the World Hotel". You can view it here .

Olivia's new brother.

2009-02-15T22:22:00.001-05:00

Olivia has a new brother Kenton. She is so happy to hold him every day. Olivia's health remains fair at best. Some days she does really well and other days fairly poor. We are still hoping that she will adjust to all of the recent medication increases. She continues to complain of pain in her legs and headaches. We have a neurology appointment this week. She has also started to have trouble walking. She appears to walk very robotic and almost with stiff legs. Please continue to pray and think about Olivia daily!

More older pictures of Olivia.

2009-02-09T00:23:00.001-05:00

We like to show everyone older pictures of Olivia so that those of you who don't know her story can understand that she was a very normal baby. Her seizures starting just before turning two and we were able to keep them fairly controlled for the next two years with medications except she had a lot of twitching at times due to also having myoclonus along with seizures. Now that she is older, between all of the heavy duty meds, the seizures and her stroke, she has had some permanent brain damage and it just seems so cruel that her life is being robbed from her!

End of the Week Summary.

2009-02-09T00:01:00.000-05:00

Olivia came home from the hospital Tuesday evening. Wed. and Thurs. she did really well and by Thurs. evening she was very restless and anxious to return to school. We decided to send her to school Friday because she was doing so well and very bored at home. Olivia really loves school. She only made it through half the day because she was just too tired.

We got her home at noon on Friday and she went down for a nap. When she woke up we noticed she was started to have head drop seizures again. She continued to have head drop seizures off and on all day Saturday.

Sunday she woke up and I noticed right away that she was not doing well. She was twitching in her upper shoulder, head & neck and left arm. I got her settled on the living room floor watching cartoons with a snack so she could take her meds. They helped her to have a good morning without twitching but it started again after her nap and very strongly this evening. We spoke with the on call neurologist who basically said if the extra meds don't hold her we will end up back in the hospital with more IV phenobarb.

Please keep Olivia in your prayers still because it will be a while before she is truly stable and we think another hospital stay will be inevitable.

She's Home!

2009-02-03T22:31:00.000-05:00

Olivia is finally home tonight. We were able to stabilize her with some med changes that will hopefully hold her. We are going to do her MRI outpatient next week. Her seizure activity is minimal at this point and we are very grateful. We are glad that our neurology office works with us to listen to our concerns about doing an MRI right now and the circumstances around my due date. We love our new neurologist Dr. Madelin Chadahumbe! She really has a heart for Olivia.

Please continue to pray for Olivia as we are starting yet another new seizure med tomorrow. Including her supplements, she takes 12 meds daily - most of them twice a day and this will make it 13.

Hospital Update...

2009-02-03T11:07:00.000-05:00

There is no real news yet which is good. She is stable and in regular room. They never even started her EEG yet. Not until 1pm today. The EEG staff stay just so late in the hospital to do them unless they are called in STAT and apparently because she wasn't having full tonic/clonic seizures she wasn't really an emergency. She also got bumped off the rotation today for an MRI so that will not be until tomorrow.

Do I sound a little crabby and impatient? Yes- I am because they are sitting up there doing nothing but "monitoring" her and giving her phenobarbital while I'm taking meds to try and keep the baby from coming. They also don't even recognize her drop attacks unless Rick points them out to them. Apparently it's normal for a child to be sitting in the bed watching tv or coloring and then suddenly slump over?? Unless they increase one of her meds to see if that will hold her then it's sort of like giving the med while she is there and sending her home blind (without knowing if her regular meds will hold her which will end in us having to turn around and do it all over again). I even wonder why we are going to put her through another MRI with sedation if it's only going to show the " leftovers" of a stroke and not tell them much more than last time.

Please continue to pray for Olivia that we can get some answers for her and get her stable enough to come home without having to turn right around and be admitted again.

Prayers needed for Olivia!

2009-02-02T17:11:00.000-05:00

We are back in the hospital with Olivia. She went to see the neurologist today and they sent her right over to the hospital for a direct admit. We are not sure what is going on yet, but she is starting to show signs of having another stroke. She continues to complain of "Not being able to see" off and on for more than a week now. She is unable to tell us what she means by that; if it's blurry vision or if she cannot see at all.

We will keep you updated as we can. They are starting her EEG right now and they are going to be giving her phenobarbital as well to stop the seizures. We just pray that she does not have to go on the ventilator.

Olivia update

2009-02-01T22:47:00.001-05:00

Sorry it has been so long between updates on Olivia. Our computer was down for nearly two months. Here are some random pictures and updates on what's happening with her from December 2008 and January 2009.

Updates:
1. We have had some really specialized blood work done which could take up to 3 months to find out the results from. It is to help narrow done what the future could bring and to verify the type of seizure disorder that she has which we believe is Progressive Myoclonic Epilepsy.

2. We are waiting for her walker to be delivered soon so she can use it at home to keep her balance. We will be calling it "Hot Wheels" just like they do at her school.

3. Jan, Feb and March seem to be her worst months health wise and this year so far is no exception. She managed to go through Nov & Dec with only an ear infection and strep throat which is very good for her, but now she is not doing well at all. We have increased her regular seizure meds and we are covering her with an extra (Valium type) med to help her get through but it's not really working.

4. Our adoption of Olivia is final. She is now "officially" our daughter forever as of December 17, 2008. She is now Olivia Ann Eding!

She is having head drop and regular drop attack seizures several times an hour, all day long. She is complaining of not being able to "See" at times which is new and she also had and episode last weekend of seizure activity in her left arm, left side of her face and neck which left her arm paralyzed for almost 10 minutes afterward.

Please remember Olivia during this rough time and pray for her recovery. We are hoping to avoid a long hospital stay this year.

Olivia on Santa's lap.

Adoption day December 17, 2008. She is waiting her turn to use the gavel.

Olivia's turn to bang the gavel and say "It's official"!!

Savanna and Olivia with their princess hats for Christmas.

Snow fun outside in January.

Christmas 2008

2008-11-29T23:18:00.001-05:00

Some funny pictures and baby pictures of Olivia

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Her 1st Easter with her pink coat on.

Her 1st Easter.

Her first birthday party and her own chocolate cake.

After digging in to her chocolate cake.

Here she is at her second birthday party.

Here she is at age 2. This is what her hair would look like if we didn't put gel in it and her pony tails. We used to call her Fluffer.

A new diagnosis...

2008-11-10T21:06:00.000-05:00

We have more upsetting news. Our neurologist informed us that they have come up with a new diagnosis for Olivia. It's called "progressive myoclonic epilepsy" or PME. Her mitochondrial problems fall under it. It's very disturbing news as it causes patients to decline mentally and physically. It can move really fast or at a slower pace depending on the patient, but there is no way to tell. Here is a link with more information.

October 2008 updates...

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Olivia as a cheerleader

Halloween 2008
Savanna and Olivia

1. We took Olivia to the University of Michigan to meet with a doctor in the neurology dept. The trip was fun and she enjoyed staying in the hotel, but we don't have much new to report. We definitely didn't like the way they run the clinic because we spent 1 1/2 hours with a young resident and 10 minutes with the specialist that we went there to see. I don't think you can make a great determination on a child in 10 minutes, esp. when you hear her history second hand from a resident instead of from the family. We will continue to look for new tests and new ideas though. We are going to consult with a new specialist in Houston that specializes in mito disorders and we'll see what she can come up with.

2. Olivia has been approved medically for a wish from the Make A Wish Foundation. We are so happy for her, but it's very bittersweet. We are thinking that she wants to go to Disney.

Paws With A Cause.

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If you or your child has epilepsy and you think they would benefit from a dog, be sure to check out these websites.

1. Paws With A Cause is a wonderful organization that trains dogs to be a long term companion for people with different types of disabilities. They actually train dogs for people with seizures. Here are some things to keep in mind when thinking about applying for a dog. First of all your child needs to be age 14 to qualify. Secondly, there is a 2-3 year long waiting list (currently) so they allow you to start applying at age 12. Third is that not every training center trains dogs for seizures, in fact it looks like they are very few centers in the US. There is no cost to receive a dog, but you would be amazed to know that it takes almost a full $20,000 to fully train a dog (through donations)so you are definitely receiving a wonderful gift.

2. If your child has certain disabilities and is not yet 14, you can apply for a Service dog through Paws With A Cause- if they are age 8 or older. These dogs have less training than the ones above, but are still wonderful. The cost is free to receive one and it costs $10,000 to train one. They have a 1 year waiting list.
Thanks to Sara for this great referral!

If you are a newbie to mitochondrial disorders please read!

2008-10-13T23:08:00.000-04:00

First let me start by stating that it is really hard to find out your child has a mito disorder, esp. when a lot of us have no true diagnosis. One thing to remember is that you are your child's best advocate and no one will tell you everything you need to know in one place. Always research as much as you can. Here are just a few things to get you started:

1. Visit this site to learn as much as you can.

2. Did you know that a mito diagnosis (even if you have one but the exact one is unknown) you qualify to join the Muscular Dystrophy Association? They can help you with multiple things including helping with equipment that you cannot afford or insurance won't pay for. They also have summer camps for children 6 year old and older. They have local chapters for you to apply at. Check them out here.

3. Your child can also qualify for the Make A Wish Foundation or other wish granting foundations. This was a real revelation for me because it reminds you how serious this disease is. Check them out here.

4. See if there are any clinical trials in your area by checking here.

5. Join a local support group. You can find some here.

6. Read through all of my links on the side and they will lead you to hundreds more.

7. Do you have your child on supplements or a "cocktail" of supplements? They usually consist of something like this: Co Q 10, Riboflavin, L- carnitine, and other high dose vitamins. If not then talk to your doctor right away to see if they apply to your situation. You can learn more here.

8. NEVER give up hope that something will help you and keep trying.

Devasting results of a metabolic stroke...

2008-10-08T11:01:00.000-04:00

This is Olivia during her metabolic stroke. She had two days of vomiting which is why we had to place the NG tube for meds to go down. She is also hooked up to IV and a cont. EEG. She woke up to discover that she could not move her right side at all. She was terrified and screamed and cried. We took her home with right-sided weakness, but she was regaining feeling. She was also in terrible pain as her right side had feeling return to it until we got her on medicine for nerve pain. Can you imagine the pins and needles feeling of a whole side of your body numb?

Late February 2008.

This is a few days after returning home from the hospital. You can see in the following two pictures how her right eye is barely open. She is right handed so she had to eat with her left hand for a few weeks. She still has some right-sided weakness.

Post stroke.

See her right eye is still weak.

This is Olivia at her 6th birthday party just three weeks after returning home from her stroke. Her recovery has been amazing and she is pretty much back to her baseline, the problem is that we can't predict when/if another stoke will strike and there are no meds for it or cure.

Introduction to Olivia

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Riding her bike with her pink "soft helmet"

Olivia at Savanna's birth.

Sleeping in.

Christmas 2005

Rocking at grandma's house.

Fifth birthday party.

Birthday balloon- Dora theme of course!