Hospice Care

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

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

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!

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!!

January 2010 update

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