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.

Olivia's new brother.

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.

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.

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!

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.