Tuesday, April 24, 2012

Olivia's Visit to the Neuro Surgeon...

I wanted to let each of you know an update on Olivia. As you know she has done so remarkably well at adjusting to life as a “Fisher”. She has also kept up with us and unless you ever read her medical file you would never know she is a little girl with post operative spina bifida and hydrocephalus. (I love what her pediatrician said “we will look at Olivia not her lab results because they do not define who she is, she is Olivia, she is not her lab work she has shown us that”-we are blessed with an amazing pediatrician who sees “Olivia”) She has seen her fair share of doctors though over the past 2 months from dentist, to pediatrician visits (which included checkups, blood work, lab work and immunizations) as well as a full MRI of her brain and spine. This girl has been a trooper and we have had great reports back. Today was the big one, her appointment with the pediatric neuro surgeon. The results shocked us a bit so I ask for your prayers. To some extent I felt like I was listening to Greek because the terms used by the doctor were well over my head, but her is my interpretation in the short of what lies ahead.




1. Olivia has a tethered spinal cord. We did not anticipate this (although we know this can be something children with spina bifida have, we did not have anything in the medical report from China stating she had it). Basically this means tissue has attached itself limiting the movement of the spinal cord within the spinal column. The cord is attached at the area where her spina bifida repair was done. The good news is she is not having any of the symptoms of a tethered cord yet, but we want to get ahead of any symptoms emerging. The reality is that children between 5 and 9 grow very fast and this can trigger the onsite of these symptoms. But right now there is not a great strain being placed on her spinal cord but over time this would occur as she gets older if left untreated.

So what does this mean? Surgery. Olivia is scheduled right now (waiting for confirmation on the date) for surgery on June 25 at CMC-Main. As I understand it she will be there 3-4 days. She should have about a 3-4 week period until full recovery.

2. Olivia has hydrocephalus. This we knew. However, anticipated that although some of the ventricles are large since she again was having no symptoms they would want to monitor and see if maybe in 6 months they had gotten any larger. Doctor said honestly right now if asked pediatric neurosurgeons around the world what they would do with her on this you would get a 50-50 split. Some would wait since no symptoms. Others would say let’s do something to prevent what they believe any future symptoms. There is one area as he looked at the MRI that appears to have a blockage but he could not tell from the MRI. So he wants to get her through and recovered from the first surgery and then reorder another more detailed MRI of that area of the brain. The results of that will determine our approach here. He is thinking if that area is blocked as he suspects that he wants to go in to her same scar from the draining done in China in 2007 and run this tube down into that area to open it up so that things would drain (this would be in lieu of a shunt). More to come on this…

For now, how are Guy and I? Still a little shocked. Guy a little more emotional than me as would be expected with some negative history with spina bifida with his brother Jeff. I am not “feeling” the hit of it emotionally “yet” standing strong and just doing what you have to do you know? I think more of that will come later. I need to stay strong. Pray that I can do that for I will only be able to stand if I stand in HIM!

I covet your prayers for our family the boys especially Jonathon was very concerned when we told them tonight. Guy and I just to be strong for Olivia and walk by faith. And for Olivia, pray for God’s hand to rest upon her for I know he has great plans for her. God has been clear from the very beginning when we accepted Olivia as our daughter that she was our “eagle” and we hold on to the scripture God gave us for her life from Isaiah 40:31 “ Those who hope in the Lord will renew their strength. They will soar on wings like eagle; they will run and not grow weary, they will walk and not be faint” . So with that said we will hope in the Lord. Please join us in claiming this for Olivia especially in this season. Pray that the surgery goes smoothly and she comes through it well along with the recovery. Pray for no complications or side effects. Pray for God to guide the hands of the surgeon. Thank you all!



4 comments:

  1. We are thinking of you and praying that all goes well with your beautiful family!

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  2. Dawn I just wanted to say I wish u n ur family the very best n I will b praying for little Olivia that everything wil b ok!! All we can do like u say is hv faith & pray that God rest's his hands upon Olivia's surgeon that day, everything wil b ok I hv faith!! That's wht we need to do is hv faith n I KNOW U DO, look how far ual hv come, its been pretty neat reading about the journey w the girl's, emotional @ times happy tho but so awesome!! I wld Love to meet ur girl's somday, that wld b nice!! Take care n will b reading ur blog closer to the day n on the day of miss Olivia's surgery!!

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    1. wow - thanks for the encouragment and the powerful prayer in faith.

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