Wednesday, March 7, 2012

Answers and Acceptance.....Hard to Hear, Harder to Learn

Well, yesterday Tuesday March 6 we met with another neurologist, this time at Memorial Hermann Children's Hospital.  Don't want to get overjoyed with her being so "observant and knowledgable" to Olivia but I have to say I went in with an open mind and an open heart....I thought.  We met with her for a little over two hours.  She read through all the previous reports, looked over all the scans, ultrasounds, MRI's and lab reports.  While discussing Olivia's daily behaviours, problems and concerns, she showed me all the MRI's.  In between all of our brains, there is a thick membrane lining housing all of the nerves that connects our right side of the brain to the left.  It allows all the nerves to send signals back and forth properly, keeps everything in tact.  Well on the first MRI back in July of 2011, the radiologist noticed that the membrane was thin.  He quoted " concerned about the thinning membrane lining the corpus luteum"........was that EVER discussed when neurologist got the report, NO!  OK am I angry, thats an understatement. Then the last MRI that we had on February 24, 2012, reported that there was no lining......OK am I pissed off now, NO I have surpassed that emotion.  I told her am I supposed to be glad you found this! Why can't I just find out the first time what in the hell is wrong with my child....Im sorry I am so angry, frustrated, full of emotions that I've never even had before but you are talking about something that we could have known about a year ago.  Not that anything could have fixed it as the conversation went on and as her explanations of the days to come continued but still.  Why go to medical school, why take an oath, why have a practice if you're not gonna follow what you promised.   WHOA!! I just put my foot in my mouth.  I promised myself, I promised God that no matter what came out of the doctors mouth whether it was what I wanted to hear or not, I was going to accept the answer, accept the outcome and say what do I do next....You know it really is hard to do what you set out in your mind to do, or what others recommend you do when you're faced with your child suffering, living a "not so normal" life and feeling absolutely GUILTY over the fact that maybe you should have sought an outside opinion sooner,maybe you should have fought harder to begin with.  Maybe so, or maybe I should have shut up along time ago and listened to God tell me you are the mom and I am the healer.  You don't have the letters behind your name that say M.D.  you dont have the nail scarred hands to prove you CAN do it all, you just have my child to care for, my child to teach and raise and my child that I can heal on Earth or in Heaven....I am so humbled when the good Lord brings me to my knees once again because it truly lets me know the power of His love, His forgiveness and of His presence in my everyday life.

Needless to say, by the end of the visit with the doctor, I was pleased that we met with her, upset over some of the news but accepting of the fact that we have plans, plans in place for the days to come.  We have a strategy of how things will be with Olivia and how we are going to deal with her and the best of all, we actually have a follow-up appointment with her after all the future tests that are ordered will be done.    Olivia will have an MRI of the neck and lower spine, followed by a spinal tap to remove excess fluid so that the fluid from the brain can drain down.  She is going to start steroids an on/off regimen to help reduce swelling and hope and pray that the brain begins to breathe and realizes there is space and it can begin to grow.  Next she is going to start her on seizure meds for a trial period of 30 days to see if there is any change in behavior.  To see if she begins to sleep at night, has less screaming fits.  She is also scheduling a hearing test to see if there is any damage since the tumor is on the paratiod gland which houses the nerves.  She knows she hears us but the question is how well..The best news was all these tests will be done within the next few weeks and ALL results will be in when we go to our follow-up visit.  That was an answered prayer that wasn;t even prayed least by me, maybe one of my wonderful prayer warriors asked for that and if so I am eternally grateful!!

As far as dealling with Olivia, she is going to need to continue her therapies, she is going to need the extra pushes to grasp concepts, commands and everyday life as opposed to others....but we can handle it, we can handle anything....thanks to a very dear friend who helped me realize that it's going to be hard but not impossible.  Olivia has had an interview at a very good school that deals with children with autism and neurological disorders in hopes that this might be the place for her.  We have also had an interview with some therapists that can come into the home and do the same treatments that this school would do.  We are just waiting to hear back from both places and then praying that what God wants for Olivia that we will be open to and accept. 

Please continue to pray for Olivia.  All of this has been very difficult on her and on top of all the usual things we are currently going downtown to Texas Children's daily for whirlpool treatments for her excema and this will continue for quite some time.  That is hard but she is doing good on the treatments and seems to fight a little less each day.  Please continue to pray for sam and hannah as well.  This has been hard on them with having to be at the hospital lots more than normal, but as always they seem to adjust and it becomes a routine thats not even questioned.  As always, thank you so much to all of you who pray for my precious babies for their comfort, for their healing, for their peace.  Thanks to all the many wonderful friend who have been their to love on my babies, give them a little joy and give me a little help even if it is in the surroundings of Texas Children's.....we DEFINITELY have a wonderful church family, wonderful family and friends.  Thanks to all who pass along this blog and share and ask for prayers, it's greatly appreciated.  You all mean so much to me, those who are my nearest and dearest, those who are aquaintances and those of whom I have never met, you mean the world to me and my family for taking the time to read, pass along and pray.  I truly believe God hears all our prayers and I know He has already answered I just have to be patient and trust and have faith in Him.  May God Bless you all....all my love

Sunday, March 4, 2012

Jesus....He CAN Move Mountains

Well this past week has been crazy to say in the least.  I'm beginning to think that Olivia has the doctors soo stumped that the same answer to every question asked has become routine...."we will have to run some tests and see"  Aren't you tired of running tests?  I know I'm tired, Olivia's tired... I catch myself sometimes thinking I must be praying wrong, asking for the wrong thing or not praying enough because how can God hear my prayers and NOT answer them???? Helloooo my kids are suffering here, theyre your kids right? I want Him to intervene and He's not and I can't figure out why?   Well I have to say, that I realized once again what the problem is as God brought me to my knees like He has soo many times before.  As I sit in the doctor's office, or at  home on the other end of the phone, I hear what the doctor is telling me, what they are planning or wanting to try and I catch myself saying why?, can't we do something else, can you give me a definite answer this is going to make it ok?  Maybe this is God's plan and here I sit being a mommy and not 100% faith invested in God that I'm the one stopping what maybe could be the right intervention for Olivia?  It's hard to be facing the fact that what could help her may also be what could literally cause her to be worse off than what she is right now....I have to have FAITH, I have to TRUST but I'm human I want a definite.  I know that definitely, Olivia and Sam both will be healed completely one day.  Now whether that day is here on earth and I can rejoice or whether that day comes when He calls them home, I have got to learn to accept the no response at the end of my AMEN's, I have to learn to accept the "we will wait and see" answers.  Until I can throw up the white flag and truly say I surrender and say "yes" I'll go here, I'll see this doctor, I'll pick up these forms for bloodwork, I may never get the answers I want and God may never intervene because He wants me to see that He is working in their lives but I have to sit back, shut up and listen.   WOW that is soo hard for me to do.

These next few weeks are going to be pretty rough and I ask that each one of you who reads this, who believes in the power of prayer and who loves the Lord to please keep my girls in your prayers.  As for Olivia, her excema had gotten bad so for the next two weeks we are at Texas Childrens everyday for whirlpool therapy, on top of our other weekly appointments. We are waiting for a phone call anyday to see the neuro team at Memorial Hermann Children's Hospital for a second opinion on what will come of Oliva facing surgery.  The doctor at Texas Children's said the fluid on the brain without a doubt needs to be drained in hopes that it will not only relieve the pressure, make her maybe feel a little better but the big plus to doing that would be that the brain might begin to grow.  A shunt would need to be put in to do that but because her brain is underdeveloped, and with the malformation and the tumor being where it is, the surgery is risky and the outcome of her being better as opposed to being worse isn't good.  There is an option that is being talked about.  The doctor has talked about doing a spinal tap to remove fluid and then repeating an MRI four weeks from the spinal tap to see how things are looking.  That is alot less invasive, could give us some good results but could also do absolutely nothing and then we would be back to square one....

Also, Sam will have bloodwork done the week after next and a bone scan to see if so far there are any changes.  She still has several treatments to go before this round of 12 chemo and radiation treatments are done, but we are praying and hoping for the best.  There is only one more 12 rounds that she can do with an upped dosage for chemo and radiation before they begin to do the intravenous chemo.  Sam seems to do ok some days and others not at all.  She has begun to run fever quite a bit, and be very irritable which is understandable.  I can't even begin to imagine how she feels.

 Please keep both of the girls in your prayers as the next few weeks will prove to be very trying as we spend everyday at the hospital for treatments, see new doctors and learn of what is to come for the both of them.  I know that those of you who are faithful followers not only to this blog, but to the Lord will pray that His will be done in all things regarding Sam and Olivia.  Please pray that my mind be open and my heart be accepting to what is being said about my babies.  It is hard to sit and watch your babies suffer and be sick and hurt and not be able to do anything but PRAY.  They don't understand what is going on with them and all they know is sickness so they don't know that there is something so much better out there.  Even though that's hard to accept, I am glad that they can't comprehend they're differences.  Over all, they seem to be happy in their daily lives.  Please pray for Hannah to have peace and acceptance over things to come and to have the acceptance of others who may not know what is going on with Sam and Olivia.  Please pray for her to have compassion for all.  She has a hard time if we are out and people are staring at Sam with her mask on her face or Olivia bandaged from neck to her feet to keep her from scratching.  She gets angry that people say things.  I try to tell her they just don't understand but she always says I don't care!  I pray that she will learn from Sam....because Sam doesnt care!!! If someone says to her "why do you have that mask on" Sam being Sam simply says "I'm sick and I don't want your germs"  Couldnt have said it any better myself.  Im very grateful that Sam is so accepting that her mask is a part of her everyday wardrobe, just like her pink tutus or her cinderella dress!  God thank you for her teaching us all of acceptance in any circumstance....

Thank you to all who read and share my blog with your family and friends.  I am truly blessed to have you all who pass on the request to pray for my 3 sweet children.  May God bless you all.