Saturday, February 25, 2012

"Come to Jesus....And Rest"

Here is an update on Olivia and an overview of what has been the last few weeks.  This has been a hard day for me to sit and update the blog about my precious little livi.  We have had such an emotional roller coaster the last two weeks.  I have felt like I've been in a bad dream.  As some may know, Olivia had a very bad episode in the pediatricians office last month.  It was enough to make the dr leave the office and personally call in a referral to the developmental neurology clinic to get Olivia seen.  Well, I am so blessed to not only have a wonderful pediatrician, but have great friends and family of God because by prayers...answered prayers we had an appointment in just 4 weeks, when others wait 6-12 months!  PTL! for the answered prayers for a speedy appointment, but what was to come, I was not prepared for.  I know that God never gives us more than we can handle.  I know that God chose me, but why?  What makes me the choice for this job....Do you ever wonder what requirements God sees that we have for why he chooses those of us with "special" babies?

We have an absolutely wonderful developmental neurologist, I couldn't have hand picked a better one.  We saw her for over two hours our first visit.  She sat down with me, talked about all the problems Olivia was having, referring back to all tests, dr visits etc.. Little did I know, she was going to tell me something I did not want to process.  As she pulled up all of Olivia's scans, MRI's as plain as a cloud in the sky you could see Olivia's brain on the computer.  There it was, damage in her frontal lobe, an excess of fluid surrounding her brain.  She was diagnosed with external hydrocephalus.  The scan shows her head is growing like it's supposed to but her brain is not so the fluid is filling up the space where the brain should be.  The news I never wanted to hear was being spoken Olivia needs surgery.  The neurologist said herself that surgery was a definite.  Olivia will need a shunt put in to drain the excess fluid from her brain to releive the pressure.  The most disturbing of all of this was what came next.  Olivia has been getting radiation every week, several scans done on her head and not ONE person noticed the changes that were going on.  It's a real stone to swallow when you hear the dr say she is disgusted that not one dr has mentioned this when it was in the last radiology report.  My heart much has my baby much more does she have to suffer??  We had a follow up MRI yesterday and are waiting for the report to be put in and we will then be seeing a second neurosurgeon outside of Texas Children's for an opinion on operating on Olivia.  The surgery is risky.  The neurologist said that the risks of operating on Olivia could cause more damage to what is there, that there is no guarantee at 100% that this would help Olivia.  Also, with the other problems going on there is risks as well to operate on her now.  So what do you do?  How am I supposed to sit, drink coffee and watch Olivia daily waiting not knowing what's going on inside and wondering is she going to be ok until she's OK enough for the surgeon to operate????

Too much, I'm tired!  I want her fixed, I want her healthy, I want her to be normal....Well, alot was put into perspective from a very near and dear friend and family.  She is fixed, she is healthy, she is normal.  This IS who God intended her to be.  This is never a decision I want to be put in as a mom, but I have to know that she is in God's hands, she is His child and she is going to be ok.  I know that God gives me the strength, I know God is where my faith and trust and are put and now I have to know that no matter the outcome, if it's His will and if the decision is what He wants me to make, I can handle tomorrow.  Through all of this, I have thought back to one of my favorite old hymns....I Surrender All....All to Him my blessed Savior, I surrender all....That's all I have.  I don't have the answers, I don't have the healing powers,  I don't have the guarantee.  All I have is GOD....And God has it all.

I ask all of you who follow this blog, who are reading it for the first time, who know us and who don't to please PRAY.  I truly believe in the power of prayer.  We have a long road ahead and I know that as people pray for God's will in Olivia;s life to be revealed to me, to the doctors we see that as I stay open to His will that I will recieve His answer.  Things will always fall into place, in His time and that there is never a doubt about anything when you are doing His will.  Thank you to all who pray daily for my girls, for my family and for the doctors who care for them.  It means alot to me that I know I can call on everyone to pray and I dont have to wonder is it being done?  Please keep us in your thoughts as we anxiously wait for the test results, for the follow up with a new surgeon, and ultimately for the decision set before us.  I know I don't need to worry because God is in control, but I'm human and a mommy and it's hard.....Even though it was under some not so pleasant circumstances, I have truly enjoyed getting to see some of my church family last week.  I enjoyed the prayer circles, the laughs, the cries and the joys.  Thank you to all who help with my girls, who have taken time out of your busy schedules to visit with us, meet us at hospital, to pray and to love them.  You all mean so much to them, to me and to my family.  May God bless each of you and again I say Thank You and love to you all...

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