Friday, September 30, 2011

MRI results from January 2010

I thought you might be interested to see the MRI scans we had done after we got the innitial diagnosis in January of 2010.  It really blew me away.  The light colored area on the scan show the stroke affected area which is now scar tissue.  It is not totally clear to me exactly where the seizures are coming from.  I imagine the doctor knows but what he has said is that they are coming from the entire left side of the brain.  These scans look like it is her right side but they are looking up from below, so it is opposite.



The scan below is a frontal veiw so it is as if she is looking at you.


It is just amazing to me that anyone could survive a stroke of this size, let alone thrive and have very few side effects.  She has had multiple development assessments and as far as they can tell, she has no delays in any area besides the weakness in her right leg and arm.  The human brain is an amazing thing.

Oh, check this out: One Patient's Story

Thursday, September 29, 2011

Clarification

After talking to a few people I realized that I have not been very clear about Ruby's current situation, mainly her seizures.  I want to clarify the type of seizure she is having because I think I really freaked some people out.

Ruby is experiencing "Juvenile Mayoclonic Epilepsy"  "The hallmark characteristics of juvenile myoclonic epilepsy are the presence of myoclonic jerks that occur on awakening from sleep either in the morning or from a nap. These jerks are the most prominent seizure type. They are typically described as shock-like, irregular and arrhythmic movements of both arms. Sometimes these movements are restricted only to the fingers making the patient or individual look clumsy or prone to dropping things."  This informatoio is from Epilepsy.com

So, thankfully she is not having huge seizures.  They are not the kind that you probably imagined with her laying of the floor "seizing".  She just has little jerks or sometimes, lately, she looks like she actually blacks out for a second and will usually fall as a result of it.  These are the ones that are more worriesome.  She has minorly hurt herself but they do seem to be coming on more often and stronger.  She will have ten to twenty of these little jerks a day along with the little black out type ones too.  Regardless of the severity of each seizure, the sheer number of seizures she has every day is what makes it a problem.  They have progressed and that is even with trying a bunch of different medications.

I just read about a new treatment that is in the trial stages where they use magnetic pulses to help the brain from misfiring and to keep the brain waves normal without having to use any drugs.  It has been shown to be effective for both seizures and depression.  The device can be implanted and be a life long cure without having to take any more meds.  Anti-seizure medication is really strong stuff and has affected our little girl in many ways.  We have tried five or six different types of medication, some have caused personality changes, her appetite has been majorly reduced, and all cause drowsiness.  It really makes me wonder if she is walking around in a fog all the time.  She does seem tired nearly all day and it is so sad sometimes.  I hope so much to find some type of cure for this that doesn't change my little girl. I am going to continue to search for new potential options and hope that we can get these tests done soon so we can move on with this.  All of the "unknowns" are really difficult. 
Keep us in your prayers.

Tuesday, September 27, 2011

Researching, researching, and more researching

So, I found out today that there are hospitals that can do second opinions over the phone.  I have been trying to find out where the best hospitals in the country are for epilepsy care and surgery.  I found that Children's Hospital in Boston ( http://www.childrenshospital.org/az/Site842/mainpageS842P0.html ) is the number one in the nation for epilepsy research and pediatric neurosurgery.  So, they are going to give us a second opinion after Ruby has her next test, the PET scan.  It is quite an amazing hospital.  We are going to be able to have a consultation over the phone and see what they think.  I am starting to feel a little more confident in the care she will recieve, whether at Lucile Packard Children's Hospital, UCSF, or if we have to fly across the country.  Hopefully other hospitals will also be able to "teleconference" with us so we don't have to drive all over the place. 
It is tough navigating through all this news without Jason here.  He has been fighting a fire in Texas for a week and has not been able to be here with us.  I can't wait for him to come home.
On a lighter note, Oliver is officially a crawler.  He is getting around really well today.  That was really fun to watch, especially since it was such a challenge and so much work to get Ruby to that point.  It really makes all of his milestones even more amazing.  It just is wonderful that he is able to do all of these things without any help.  Just set him on the floor and there he goes.  It also makes me really appreciate how far Ruby has come and how desperately I want to keep her current level of physical and mental capabilites intact.  I would just be crushed if she had to start all over again after a major brain surgery.  I hope and pray that she will not have major setbacks but my heart just aches at the thought of her losing even the tiniest bit of herself.  She has such an amazing personality and beautiful smile.  I just can't imagine if any of that were taken away.  This is why I am going to search the entire world if I have to, to make sure she gets the absolute best possible care.  Someone, somewhere knows of a better way to do this, and I will find him/her.

Also, I want to thank you all so much for your support.  It has been a true nightmare.  Something I never ever could have imagined and it is totally unreal.  I feel sort of in a fog, like I am going to wake up and find out that none of this is real.  But unfortunately it is and I don't get to wake up.  While I am in this fog I really do appreciate all the love and prayers we have been given.  I know it may be awkward for you out there too.  Not knowing what to say or what may be a strange question to ask.  I want you to know that you should not feel weird.  Ask anything you want.  I appreciate your interest and welcome any questions or comments or prayers.  I was thinking that this may be a good way for any of you to ask questions you may have because I think they will stay on the bottom of the posting and you can read what each other have asked because I am sure you probably have similar questions.  I will try to answer them quickly but sometimes it is hard to get on the computer.

Thank you all again so much for your love.

Below is one of my favorite video clips.  It was one of the best moments of my life, so far.

Monday, September 26, 2011

Many challenges faced and more ahead

Ruby June- Our little track star

 I guess the best place to begin writing what has happened in our life is to start from where I left off. After Ruby's diagnosis of a prenatal stroke in December of 2009 we have had a series of tests and lots and lots of therapy. 









In January of 2010 Ruby had an MRI to see what the stroke looked like.  It was much more significant than I had imagined.  The center of the left hemisphere of her brain had become scar tissue due to a lack of blood flow in utero.  She still was not crawling or able to get to sitting without assistance.  We started therapy in Feb. 2010 and she has been improving more and more every day.  She took her first steps right before her second birthday in April 2011 and now is running and can jump really well.  It is amazing.



In January of this year (2011) we had to take Ruby back down to Lucile Packard Children's Hospital because we were noticing something that resembled a seizure so we wanted to have it checked out.  She was hooked up to an EEG machine and monitored for 8 hours.  During that time we recorded 26 seizures.  The doctors then prescribed medication and she has tried five different kinds that have not been able to control the seizures. 


In February 2011 we were blessed with the arrival of our son, Oliver.  He is so funny and super strong.  He just took his first "crawls" yesterday.  He is a real delight to our entire family.  He and Ruby get along wonderfully and she just thinks he is the funniest thing ever.



On Tuesday, August 31st we went down and had another EEG done.  It was 48 hours and I was amazed that Ruby was such an amazing sport about it.  In the top picture you can see her all hooked up and her head wrapped up.  We had to follow her around for two days and push a button every time we saw a seizure.  There were quite a few.   We finally met with her neurologist on Friday, Septemeber 23rd and got the results.  First of all he did an exam that showed she has no peripheral vision on her right side, which was news to me.  Then he tells us that the entire left side of her brain is not functioning.  It was a complete shock because Ruby is really smart and if you didn't know her well you would never even know anything was wrong besides her braces and her hand in a fist.  But because the meds aren't working and his thougths that the left hemisphere of her brain is not functioning he reccommeds a Hemispherectomy to get rid of the seizures that have started getting worse over the last few months.  This was quite a shock.  That is probably the most drastic type of surgery there is.  I can't even believe a surgery like this is possible. 

Ruby in her TUTU

At first I was just thinking "let's just do it and get it over with".  Now I am thinking "If we have to travel across the US, we will find an alternative to this insain procedure".  We finally have accepted all the challenges in Ruby's life and are seeing great strides and then WHAM-O.  A potential HUGE step backward and potentially life altering surgery.  She could have all kinds of complications both physically and mentally.  I say "no way".  Unless all the neurologists and neurosurgeons in the US say that is our only option I will be hunting down alternatives.

So, this is where we are now.  She has to have a PET scan and then we have to meet with the neurosurgeon.  After that I will begin working on getting 2nd, 3rd, ...8th opinions on the matter and deciding what to do and where to go from here.  I really don't know what else to write but will try to keep this updated.  I am sorry if I am not personally telling each of you what is going on, especially those in the family or close friends, but it is really hard to even talk about. 
So keep up in your prayers and I will try to keep this updated as more information come up.