Sunday, February 15, 2009

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!

Monday, February 9, 2009

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.

Tuesday, February 3, 2009

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.

Hospital Update...

There is no real news yet which is good. She is stable and in regular room. They never even started her EEG yet. Not until 1pm today. The EEG staff stay just so late in the hospital to do them unless they are called in STAT and apparently because she wasn't having full tonic/clonic seizures she wasn't really an emergency. She also got bumped off the rotation today for an MRI so that will not be until tomorrow.

Do I sound a little crabby and impatient? Yes- I am because they are sitting up there doing nothing but "monitoring" her and giving her phenobarbital while I'm taking meds to try and keep the baby from coming. They also don't even recognize her drop attacks unless Rick points them out to them. Apparently it's normal for a child to be sitting in the bed watching tv or coloring and then suddenly slump over?? Unless they increase one of her meds to see if that will hold her then it's sort of like giving the med while she is there and sending her home blind (without knowing if her regular meds will hold her which will end in us having to turn around and do it all over again). I even wonder why we are going to put her through another MRI with sedation if it's only going to show the " leftovers" of a stroke and not tell them much more than last time.

Please continue to pray for Olivia that we can get some answers for her and get her stable enough to come home without having to turn right around and be admitted again.

Monday, February 2, 2009

Prayers needed for Olivia!

We are back in the hospital with Olivia. She went to see the neurologist today and they sent her right over to the hospital for a direct admit. We are not sure what is going on yet, but she is starting to show signs of having another stroke. She continues to complain of "Not being able to see" off and on for more than a week now. She is unable to tell us what she means by that; if it's blurry vision or if she cannot see at all.

We will keep you updated as we can. They are starting her EEG right now and they are going to be giving her phenobarbital as well to stop the seizures. We just pray that she does not have to go on the ventilator.

Sunday, February 1, 2009

Olivia update

Sorry it has been so long between updates on Olivia. Our computer was down for nearly two months. Here are some random pictures and updates on what's happening with her from December 2008 and January 2009.

1. We have had some really specialized blood work done which could take up to 3 months to find out the results from. It is to help narrow done what the future could bring and to verify the type of seizure disorder that she has which we believe is Progressive Myoclonic Epilepsy.

2. We are waiting for her walker to be delivered soon so she can use it at home to keep her balance. We will be calling it "Hot Wheels" just like they do at her school.

3. Jan, Feb and March seem to be her worst months health wise and this year so far is no exception. She managed to go through Nov & Dec with only an ear infection and strep throat which is very good for her, but now she is not doing well at all. We have increased her regular seizure meds and we are covering her with an extra (Valium type) med to help her get through but it's not really working.

4. Our adoption of Olivia is final. She is now "officially" our daughter forever as of December 17, 2008. She is now Olivia Ann Eding!

She is having head drop and regular drop attack seizures several times an hour, all day long. She is complaining of not being able to "See" at times which is new and she also had and episode last weekend of seizure activity in her left arm, left side of her face and neck which left her arm paralyzed for almost 10 minutes afterward.

Please remember Olivia during this rough time and pray for her recovery. We are hoping to avoid a long hospital stay this year.

Olivia on Santa's lap.

Adoption day December 17, 2008. She is waiting her turn to use the gavel.

Olivia's turn to bang the gavel and say "It's official"!!

Savanna and Olivia with their princess hats for Christmas.

Snow fun outside in January.