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

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?!

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.