Monday, November 7, 2011

An overview of the past two years

I got to thinking the other day that many people who read this blog do not know the whole story and it is difficult to search through past rantings to find the information about what is truely going on with our little Ruby.  So for all of you who don't know the whole story, this one's for you....

Ruby was born a smiling happy healthy baby (or so we thought).  There were no major complications and she was born with no signs of any problems.  She was alert, breathing great, and all her tests came back normally.
As time went on Jason and I started to notice that there were certain things that seemed a little off.  She only ever used her left hand and she seemed to only ever want to look off to one side.  I took her to a couple different doctors and asked about these things but they said she was fine and that she was probably just left handed.  Well, I know that children do not show a dominant hand until WAY later in life.  She should have been using each hand equally. 
Thankfully our family is very involved in our children's lives and my mother in-law enlisted a friend of hers (the local pediatric physical therapist) to come take a look at Ruby and see if she saw anything out of the ordinary.  Immediately she did.  We then took Ruby to another pediatrician and he agreed.  We were referred to a pediatric neurologist at Lucile Packard Children's Hospital, part of Stanford University Hospital.  Within a couple weeks we found ourselves sitting in the office of Dr. Donald Olson, pediatric neurologist.  After a brief examination he concluded that he thought she had suffered a stroke sometime when she was very young, likely before she was born.  This was absolutely shocking to me.  I had never in a million years thought my perfect little girl could have had a stroke.  Babies don't have strokes... Well apparently I was wrong.  Babies do have strokes.  The technical term for what her diagnosis was is "Cerebral Palsey".  This is a very gereral term for any type of brain injury.
We then scheduled an MRI and had that test done in January of 2010.  The results came back confirming what the neurologist had thought.  From there we were given a prescription for physical and occupational therapy. 
Ruby started doing the therapy right away through our insurance and a couple months and many hundreds of dollars later, we were able to get enrolled in a program for children with special needs, which thank God is free.
About eight months later we started to notice what looked like little shivers when Ruby would wake up from a nap or in the morning.  We brought it to the attention of her PT and OT and they agreed that we should see the neurologist again, that it may be a type of seizure.  In January of 2011 we had a video EEG done that confirmed she was having seizures.  I was eight months pregnant with Ruby's little brother Oliver, so sitting in a doctor's office with Ruby all hooked up to machines was quite a challenge but she was so amazing.  I am constant amazed by her wonderful spirit.  I just love that little girl so much!! 
Ruby was prescribed medication and over the next ten months we tried many different types of medication, but none provided any type of relief.  Then we started noticing what looked like little twitches during other times of the day.  She would just go black for a moment.  So, again we met with the neurologist who set us up with another EEG the first of September 2011.  This one lasted for 2 days.  We followed Ruby around with wires all taped to her head to monitor her seizures.  We were lucky to stay in a great condo that we were allowed to stay in for free thanks to my step dad's neice Theresa (thank you Theresa).  It was a great setting and so comfortable.  Ruby was so amazing and such a fantastic sport about the whole thing.  I just couldn't believe how wonderful she was during the entire time.  By the way, all her tests and doctor appointments are done at Lucile Packard Hospital in Stanford.  It is an amazing place. 
So, the EEG revieled that they were seizures and the location was widespread over the entire left hemisphere of her brain and since the medication is not working and the seizures are getting worse, the doctor reccomended a "hemispherectomy".  This surgery disconnects or removes the entire left hemisphere of the brain so that the area with the seizure activity is gone.  WHAT??!!  I know right.  This is crazy!  That is exactly what I was thinking and still think.  I can't believe anyone could survive with such a drastic surgery but I guess it is done all around the world for seizure control and since Ruby already had a stroke it makes her a good candidate for the procedure since much of her left hemisphere is already damaged or non functional.  Even though I know that, it still is unreal.
The next step will be a PET scan (look that up it is amazing).  That is this week and then after that we meet with the neurosurgeon to get his opinion and then we will be going to UCSF to get a second opinion and we have a neuosurgeon at Boston Children's Hospital that is going to do a teleconfrence second opinion for us.  We are getting all our bases covered for sure....
Late last week I realized we were going to need some help covering the medical expenses and also all the associated costs with having a child in the hospital.  I saw these cute shirts and thought maybe a few people would be willing to buy one to help us out.  I splurged and bought 17 shirts.  I thought that would last a while and we could slowly add the money to ruby's medical expense account.  I was way off.  We have already sold all the first order and most of the second.  On top of that we have many donations and amazing people come forward who want to help us.  At this point I am not even sure how much things are going to cost us but I do know that we have spent a ton of money on medical expenses and special equipment (Ruby's leg braces) this year.  I never ever ever would have thought we would be asking for help.  I never could have imagined things would turn out this way. 
I thank God every night for the miracles in my life.  I also know that every moment in my life has been for a reason.  I was so angry when I lost my job and then soon found out it was God's plan that I be home with my little girl and also with my wonderful son.
So that is our life in a nutshell.  I look forward to the day when I can write a long post like this all about how wonderfully my family is doing and not about all of our challenges.  Thank you all so much for your love, support, and prayers.  We are all so lucky to have such a wonderful family and community standing with us and holding us up when we feel weak and giving us words of encouragement when we most need them.  Thank you all so very much.
With love,
Sarah

3 comments:

  1. Sarah, Connie helped me raise Robert and I have a background in neurological disorders. Others would know more than I, but, I think that as her brain damage was maybe before birth or very early she has been developing skills on the other side of her brain. Like developing handedness, I believe, that in these early years the brain is extremely plastic. So my conclusion would be that she will not be like she has lost an entire hemisphere, but much less because she has been programming the good side all her life. All the great work you have been doing will serve her well. My experience would be that no one knows what her prognosis is. But since her birth I have been looking at pictures of this gutsy little lady. She has a great family. You are doing an incredible job and Connie is a great natural teacher and nurturer. Also, I was raised with a handicapped brother and because of my parent's attitudes I believe it was only beneficial to my life and determined my professional life. So don't worry about little brother. Linda

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  2. I am a friend of Matt and Carly Alley's. When I heard this story, I wanted to do something. As a mother and a Pediatric Nurse, my heart goes out to you and your family. It sounds like you are doing all the right things, and Ruby and Oliver couldn't have asked for better parents. Thank you for sharing your story. I will keep you all in my thoughts and prayers. The mind of a child is an amazing thing. Ruby will persevere.

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  3. Sarah, I was wondering if I could get in touch with you in email. My son had a stroke in utero and is left hemi, he has infantile spasms (seizures) and we can't get them to stop with meds. We are talking about surgery now. I'm feeling very overwhelmed and can't find anyone that has a similar story... until now! Here's the weird thing, our pediatric neurologist is at Lucile Packard children's hospital as well.

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