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.

School Smart Program

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

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.

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.

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!

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...

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.