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?!

New

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.