Thursday, December 29, 2011

Nothing new to report

I realized the other day that we haven't updated this in a while. We just wanted to let you all know that the surgery has not been scheduled yet. We were to hear from the hospital last week but they still have not called to schedule it. Hopefully they will soon because this waiting is the pits.
Ruby and her friends playing at daycare

Wednesday, December 21, 2011

Meeting with the surgeon

Sorry it has taken so long to write about our meeting with the surgeon.  I know jason gave a little blurb but I think it was really late at night because his words were a little confusing and not his usual well written self.  So I am going to clarify a little of what the doctor said and what to expect.

So, we met with the surgeon on Thursday, December 15th in Stanford.  The appointment lasted almost two hours.  They definitely did not rush us through.  We had plenty of time to ask every question we could think of and the surgeon and his nurse gave us a ton of information that we would not have even though to ask.

I guess the best way to describe the appointment is to just walk through what Ruby will go through for the surgery.

First, we have to keep her out of daycare for about a week before the surgery so that she doesn't catch any colds or anything.  If she even has the slightest runny nose they won't do the surgery and we have to postpone everything, which could be super costly if our lodging doesn't have a good cancelation policy.  So we have to be prepared for that, but we are going to talk to the other parents at daycare and see if they can keep their kids home if they are sick for the week prior to us being away from daycare.  I know that may sound like overkill but we just need to get this done and don't want to have to make changes to such major plans.  So if your kids go to Connie's daycare, we will be sending a kind letter home asking to please keep your kids home for a couple days if they are sick the week before we keep ruby home.  She will be home with us and Oliver for the week before the surgery but the week before that could be when she catches something so we have to be as careful as possible. 

So after our week quarentine, we will go down to Stanford a few days before the surgery so they can do all the pre-op stuff and be sure she isn't sick.  I am not sure what that will include.  We will probably stay down there for the few days before the surgery, but that I am not totally sure about.  Oliver really doesn't like being in the car so the less driving we can do the better.  I have been looking everywhere for somewhere to stay but the only thing that keeps popping up is where we stayed before and it is super expensive.  So, I will have to keep looking.  The bummer part is that the place we stayed before is super convienient and really close to the hospital.  It felt like home, which was nice with all the crap we were dealing with. 

Here is where it gets interesting.  They are not going to do the surgery right away.  First they are going to expose her brain and put these thin rubbery mats on her brain tissue that has a ton of little electrodes connected to wires that monitor her brain activity.  This will give them a very clear picture of exactly where the seizures are coming from.  That will determine the extensiveness of the surgery.  If the seizures are coming from all over the left side, they will be doing the full hemispherectomy.  If the seizures are more localized they can adjust what they have to disconnect.  This is pretty amazing to me.  It totally sucks that she has to deal with the anesthesia twice and that during this testing with the electrodes on her brain, she has to be sitting in her hospital bed the entire time.  That is going to be very interesting.  I am not looking forward to that at all.  It could be anywhere from 3-7 days stuck in the bed. 

So, once the area of her brain causing the seizures has been pinpointed they can go back in and do the surgery.  The technology used during the surgery is also totally amazing to me.  They will be able to watch TV screens that have 3D maps of Ruby's brain so that the doctor can see exactly where to go. 

Once the surgery is done she will be up and out of the bed in a couple days or so.  They want to get her back to her normal routine as quickly as possible.  This of course is all going to depend on the outcome of the surgery.  She may have considerable weakness on her right side again and maybe not be able to walk.  It is unclear as to how severely she will be affected.  The doctors all seem to be very optomistic because she already had the stroke and has been working hard to get use by using the other side of her brain.  Although the doctors all say similar things, I still am totally terrified that she is going to wake up and freak out that she cant use her leg or arm.  I know at this point she knows what is normal and what is not.  This makes me really sad.  But I have to remember how far she has come and she will overcome anything that happens.  She is a feisty little lady and when she sets her mind to walking, she will be walking in no time.

All together, we will probably be down in Palo Alto for about three weeks or so, as long as all goes well.  Ruby will have to have her head shaved.  This also makes me super sad but the doctor reassured us that it is important to help keep the area clean and cuts way down on infection.  I know it will be hard to see my little girl with the stiches, scar, and no hair.  Honestly, it makes me want to bawl my eyes out.  I just want to run my fingers through her hair, put it up in cute little pony tails, and just give her kisses non-stop. I am sure it will grow back quickly, but that doesn't mean it won't be difficult to see her without any hair. :( 

We will be hearing back, hopefully this week to schedule our appointment.  I am still working on my second opinion, which we should be getting soon, through Children's Hospital Boston (Harvard pediatric medical school).  I guess we should feel pretty good about the opinions we get from Stanford and Harvard..... I looked into getting a second opinion from John's Hopkins but it was like $1K just for their second opinion and insurance doesn't cover that, so we are going to stick with our top two.  Hopefully they can agree that this course of action is the best.

Ruby still has not had any "drop seizures" in a few weeks now.  Thank you God!  Aparently if she were still having those, this would be a completely different surgery and much more serious, if that even seems possible.  The "drop seizures" were the ones that were making her completely black out and fall, often hurting herself.  I am so thankful those are gone.  It was making my life so stressful and it also made me super sad whenever I would see one.  Again, Thank you God for relieving her of those.  Please pray they never return.

Thank you all so much for your love and prayers.  Also, thank you SO much for all who have donated to us.  We would be sunk if it were not for you.  This surgery is going to cost WAY more than we ever expected, so I am glad we started looking for help early.  There may be another fundraiser sometime in February but i don't have any details on it yet.  As soon as I do I will post it here.

Thank you again and please continue your prayers for Ruby and our family.  They are powerful and we appreciate them so much.

Thursday, December 15, 2011

Getting closer

So we made a trek down to Stanford today to meet with the surgeon, and we feel it was a pretty good meet.We werer taken back by some of the stuff that he wanted to do/proposed to doing, which now sounds like a good idea but hearing things for the first time is pretty gnarly. We basically are in a holding pattern until we hear back from the hospital for further dates for the procedure. I am in a torn position of happy to be getting things going and being done with this chapter of our lives and Ruby being able to live a NORMAL life finally, but on the flip side I am deathly afraid of whats to come...2 weeks of a watchfull eye from us and the doctors before and after the surgey is fine, it just KNOWING what is going to happen....outcomes are down the road, but cutting into our babys head like this is not a game or picking out what shirt matches your pants type procedure. I can look at the WHAT is to be done and need to look at the OUTCOME or the long term benifits of this. This too shall pass and we can be on a speedy and smooth road to recovery. I am sure Sarah will want to write more about the appointment so I will leave it up to her, as for now, I just really wanted to say things are going, and they are going good.

Tuesday, December 13, 2011

Amazing weekend

So many of you may or may not know but my brother, Josh and a ton of his friends had put together a benifit for Ruby this past weekend down in Las Vegas. I was always a little hesitent about having people do things like this just cause I am not used to being on the recieving side of these, but always on the helping side. I said go for it and boy did him and his friends get things done!!


The benifit was a 20 dollar donation and you get a Ruby June tattoo with a little red ruby about the size of a quarter. They also did a small car / bike show, silent auction and raffle. I figured that there would be a bunch of people coming to the car show and get a bite to eat, and MAYBE a hand ful of people would get the little red ruby. Once I had got to see what the tattoo was going to look like, I thought " well, people would get the ruby, but in no way would they get her name over the top of it too!" Boy was I wrong!!!!
I was SO blown away on the ammount of people that had either came through to say hi, some to donate, and a ton of people to get the tattoo. I had figured around 10 people would have made it through for a tattoo, but if I had to take a guess, I would comfortably say at least 80 - 100 people came through. Out of that bunch of people wanting a tattoo, I would say 20 got ONLY the ruby, so that means there are 60 - 80 people walking around with Ruby June's name permantly inked on them. I was amazed and everyone had the same answer when I asked "are you sure you want the name." They all said " its for a great cause, why wouldn't I?" I was amazed at how many people even got the tattoo as a 1st one too. From about 1 pm on saturday till 8-9pm that night and 2 to 8 on sunday was a pretty steady stream of people and I was honored when Chris from the shop asked me to set up my equiptment and be a part of giving the tattoos. here are just a couple of pics of people getting them......
Here is also an idea of a few places people got them, I kinda picked some of the more extreme ones, I would say MOST of them ended up on peoples arms or legs but I would say there was a few of each of these places done....minus the last one that was the craziest and the best!!!

After it was all said and done, this is everyone that made this last weekend possible, in total there was a great deal of money raised but more importantly was that these are the people that stepped up to help a perfect stranger and family. There is no way to express in words the appreciation, love, and new friendships that were built over the weekend and they all hold a special place in our hearts. These are the people that give us faith that there are still good people willing to do good things for another. We can't thank enough Chris and the crew at Pokers Tattoo, Margie and Jenny and everyone at Deadmans hand Tattoo supply, Tail Draggers car club, everyone that I forgot to mention, you know who you are, everyone that came and got a tattoo, and my brother "uncle Josh"




I am and will always be at a loss for words for this past weekend, looking back at what I just wrote, There is no way to describe the feelings, and amazement that I experenced and am blessed to have gained all these people into my "extended family" Thanks again!!!

Sunday, December 11, 2011

Thank you for your support and clarification

I want to thank all of you so much who came out to Poker's Tattoo in Las Vegas this weekend.  There was a great turn out.  I am sure Jason will write more about this when he returns from Las Vegas. 

I came across a posting that came up when I googled the event.  It said that I had to quit my job to take care of Ruby and that Jason had been laid off and that is why we were asking for help with her medical expenses.  To clarify, Jason and I both have jobs.  I was laid off two years ago but now am back working and Jason has had his job for like ten years and actually just made Captain for Pinecrest Engine 32.  Amazing how information gets altered over time.  That is actually the main reason this blog exists.  I want to make sure that the information going around is accurate and straight from us.   

To be honest, we haven't actually asked for any of this.  The fundraising has been taken on completely by others, except for the shirts.  It has been truely remarkable.  I really didn't even think the shirts would sell like they have.  I thought we would slowly sell a few here and there.  Boy was I wrong.  As soon as we said we may need some assistance people have really come forward to help in any way they could.

The cost of lodging in Palo Alto is quite expensive and also, since I am new to my job, I don't get any paid time off.  All the time we will spend with Ruby in the hospital and the few weeks after the surgery, I will be off without any pay.  Those are the things that truely frighten me.  We do have health insurance but that doesn't cover the behind the scenes costs that go along with major procedures such as this.

The outpouring of support, both financial and emotional/spiritual, has blown me away.  I know that part of living in a close community is that you build relationships and close ties with others around you, but until now I really didn't fully appreciate it or really understand it.  As a teenager I always dreamt of getting away from here, living some glamourous life in a city somewhere, and starting new.  As I got older, and especially after having my two beautiful children, I am so thankful to be here near my friends and family.  I can't tell you enough how much I appreciate all of you who continue to hold Jason and I up during this emotionally exhausting time.

People keep telling me that they don't know how I am staying so calm and "together" during all of this and I have to say that it is because of you that I can do it.  I am not saying that I never lose it, because I do.  I just know that "this too, shall pass".  I will soon be able to look back on this nightmare and Thank God that it is over.

Friday, December 9, 2011

A small victory

Today we met with Ruby's neurologist to go over the results from her PET scan that was done in November.  The results were as the doctor had expected except for one thing.  Ruby must have had a seizure while the test was going because they were able to see the exact area her seizure was coming from.  With this information he believes that the best course of action is not the hemispherectomy.  He is going to consult with the neurosurgeon before we meet with him next Thursday to voice his reccomendations that he do a less drastic "resection".  He wants to disconnect the front and middle lobes, where the seizure was shown on the scan and also the area that was damaged by the stroke.  This will leave the rear portion of her left side.  This is a good thing, although he did say that we may have to go back in and do the rest if it doesn't work at ridding her completely of the seizures.

I was really excited that Ruby really hasn't been having the larger seizures and can attribute it to nothing short of a miracle.  I was really praying that he would say we wouldn't have to do the surgery after all, but that wasn't the case.  So, we will be heading to Stanford once again to meet with the neurosurgeon to discuss the pending surgery.  Now that it has been reccommended that she have a less drastic surgery, I am much more willing to do it here at Stanford instead of traveling somewhere far away. The surgeon here has been working as a pediatric neurosurgeon since 1971, so he is very experienced.  He is also the head of the pediatric neuosurgery department at Stanford medical school.  I don't imagine that title is handed out to someone unless they really know their stuff.

Here is a little blurb about Dr. Edwards. http://neurosurgery.stanford.edu/pediatric/me.html
Here is a little about the hospital
http://neurosurgery.stanford.edu/pediatric/overview.html

I really do love Stanford.  It is a great hospital and they really do try hard to make it comfortable for the whole family.  Not only that, but it is a great little city.  The neurologist today said that we would likely be at the hospital for 7-10 days for the surgery, depending on the amount of therapy Ruby would need afterward.  He said that because of her stroke the impact from the surgery would be much more minimal than it is for other children who have otherwise undamaged brains.  Since she already has been working to make up for the part of her brain that was damaged by the stroke, she has built the bridges in her brain to make up for many of the functions of the left side. 

I can rationalize all I want about how it is okay and how we know it is the best thing for her but it still scares the hell out of me.  They are going to have to cut her open and it just scares me to death.  They can't do any laproscopic or minimally invasive surgery.  I know it is stupid to think of things like her having to have her head shaved, but I am really scared to see my poor little baby girl with her beautiful hair shaved and huge black staples in her scalp.  I know that the hair will grow back and the staples come out soon after the surgery, but I just can't imagine seeing her like that.  And then to throw in the real fears that I don't dare speak of.... It is just one of those things that makes me feel like my heart has been pulled out of my chest.

But, on the other hand.... It really was a victory today for Ruby.  It is unlikely she will have to have the full hemispherectomy.  Thank God she had a seizure during the test.  It really was unlikely for that to happen because her seizures were not very frequent but because of that they were able to see the area causing the seizures very clearly.  Once again, someone up there has been looking out for us and helping me take care of my little girl.

Thank you all so much for your prayers and your loving words.  The journey already has felt so long but it truely hasn't even begun.

Wednesday, November 30, 2011

No other reasonable explanation...

I can hardly believe that Ruby now has had at least a week with no seizures.  Well, I shouldn't say that.  She still has a few minor little twitches when she wakes in the morning and after naps, but her neurologist was not concerned with these.  It was the larger ones that he was mostly concerned with.
I don't even know what to say about it besides the fact that I thank God and all of you who have been praying for Ruby and my family.  We have seen some significant changes for the better in Ruby and I can only say that it must be a miracle.  I know that a week may still not seem like a long time but for us it feels like an eternity.  It makes my entire chest ache to think of all the heart ache we have been experiencing watching our little Ruby black out and hurt herself over and over every day.  It has been a wonderful vacation for my soul.
The neurology office just called as I was writing this to confirm our appointment to see Ruby's neurologist on the 9th of December.  This is where we will get the PET scan results and hopefully she will not have had any more seizures and we can discuss what other options we have instead of surgery.  I just can hardly think of this as an option.  I have been trying so hard to accept the surgery and wrap my head and heart around it and now if her seizures are truely gone there is a chance she won't have to do it at all or maybe something less drastic.  I know, I know... I can't let myself get too excited.  There is a chance this break in seizure activity is a fluke, but maybe not.  Maybe not......  Dear God, what an amazing gift that would be to Ruby and our family. 
The idea of having someone cut into your baby's head and "damage" their brain on purpose is just pure insanity to me and for the last few months we have been doing everything we could to accept that insanity as our reality.  I just beg you all to continue your prayers for Ruby and thank God every day for blessing our family.

UPDATE: After picking Ruby up from her grandparent's house today, Bill reported that he did see her have a seizure today. So, there is one..... Let's hope we continue to see a decline in the number of them. That would truely be a miracle. 

Monday, November 28, 2011

The Power of Prayer

I want to thank all of you who have been praying for Ruby and our whole family.  I know it is powerful and it is wonderful to report that we didn't see any seizures for a few days.  She normally was having about five or more a day.  It is too early to get really excited but I just wanted to thank all of you who have been putting her in your prayers.  It would truely be a miracle if these seizures went away on their own and we no longer had to worry about surgery.  As I said, it is too early to get my hopes up, but at least we can celebrate a few days with no injuries or heart break when she falls and hurts herself due to the seizures.
Please continue your prayers for her.  We still have a long road ahead.  We will be getting the results from her PET scan in a couple weeks which will determine what our next steps will be.
Thank you all again so very much for your love, support, and prayers for Ruby and our family.

Friday, November 25, 2011

Not out of shirts....

So sorry for the confusion but Jason didn't know I had ordered another round of shirts.  We now have every size in the white shirts.  They are available directly from us or at Caffe'  Blossom in Twain Harte.  Please share this information with your friends and family.  I know there were more people who were interested in the shirts but we ran out a couple weeks ago. 

Here is Ruby right before we gave her the anesthesia for the PET scan. 
You can see the MRI machine at the end of the bed.
Thank you all Very Very much for your help and support. 

Thursday, November 24, 2011

Out of Shirts!!!!


Well, we have been overwhelmed with the tshirt deal for Ruby and are out of them for the time being...we are going to finish sending out the ones ordered, and I will contact everyone that had ordered a black one too, once they come in. So, sorry to anyone that may have missed the boat on he shirts, and hopefully we can get more down the road for everyone that wants to purchase one. Thanks again for all the support, its very humbling and amazing at the same time. Happy thanksgiving to everyone out there, we are very greatful to have so many freind like all of you!!!

Saturday, November 19, 2011

Shirts at Caffe' Blossom

For anyone still interested in buying a shirt, you can now pick one up at Caffe' Blossom in Twain Harte.  While you are there, be sure to try some of Hetty's delicious coffee and treats.... Yum!
Thank you all so much for your love and support.

Ollie and Ruby both say Thank You too.

Thursday, November 17, 2011

Another round through the five stages of grief

When I was nearing my layoff in 2009 I started feeling a bunch of different things that I could not explain. I did a bit of research on the five stages of grief and realized they can be applied to any major life changing event not just to the way a person deals with the loss of a loved one.  It really applies to the loss of anything and in my case it is the loss of my daughters health.  I went through it the first time we got her initial diagnosis of Cerebral Palsy because she had suffered a stroke.  I had to go through all these stages before getting the place of acceptance.  And WHAM-- as soon as I got there this came along.
 Today I have been having a really tough day. It is one of the days I have been dreading, when things start to seem real. While I was at work I started thinking about the stages of grief and thought I should revisit them to see if again it could help me work through some of this weight I have been carrying but not really looking straight in the face.

Sure I have been researching doctors, surgeons, hospitals, alternative treatments, etc., but I have not allowed myself to really think or feel what is happening to my little girl.

The first stage of grief is denial. This one is the most obvious and the "tool" I have been using to get through all of this. Unfortunately it has run it's course and now it is time to face the truth. I was feeling bad about not wanting to really feel what is happening but after reading about denial I realized that it is what I needed to do so that I could function and get done what needed to be done. You can find all this stuff at The Five Stages of Grief.  The author writes
"This first stage of grieving helps us to survive the loss.... Life makes no sense. We are in a state of shock and denial. We go numb.....We try to find a way to simply get through each day. Denial and shock help us to cope and make survival possible. Denial helps us to pace our feelings of grief. There is a grace in denial. It is nature’s way of letting in only as much as we can handle.

As you accept the reality of the loss and start to ask yourself questions, you are unknowingly beginning the healing process. You are becoming stronger, and the denial is beginning to fade. But as you proceed, all the feelings you were denying begin to surface.
The next stage is anger.  There is certainly some underlying anger in this whole situation.  I feel like underneath my skin is just anger boiling away.  I am angry that my little girl will have to go though surgery and potentially have life altering effects because of it.  I am angry that we even have to make this decision.  I am angry that my little girl can't just have a "normal" life like all the other kids we see.  I am angry at her seizures and that they keep hurting her.  I am angry at the stress this is causing me and my entire family, and community for that matter. The author cited above writes that "The anger is just another indication of the intensity of your love." 
Stage three is bargaining.  "We become lost in a maze of “If only…” or “What if…” statements. We want life returned to what is was; we want our loved one (healed). We want to go back in time: …if only, if only, if only."  This is why I spend so much time trying to find another solution.  I don't want to accept the diagnosis and I still feel like there is a chance we won't have to do the hemispherectomy.  Maybe if I research enough there will be an alternative.  Well, I know in my head that the neurosurgeons we are going to are much more capable of doing the research than I am.  I know in my head that no matter what happens, we will all be okay.  But, my heart tells me to keep looking, searching, hunting for something to help her.  I am certain I will not be able to stop until it is all over.
Depression.... that was today.  I was in a dark cloud and through this writing I am hoping to be able to come out of it a little.  I can hear a voice in my head saying "you shouldn't be sad, it hasn't even happened yet, she is fine, it will help her, being sad doesn't help anything".  I know these things but it still scares the crap out of me and makes me want to cry all day.  I don't know if it's the weather or if it is because I had to spend a bunch of time getting her medical records together yesterday but for some reason, today it seems real.  I just want to hold my babies and never let go.
Acceptance: "recognizing that this new reality is the permanent reality. We will never like this reality or make it OK, but eventually we accept it. We learn to live with it. It is the new norm with which we must learn to live."  I had finally gotten to this point about Ruby's stroke.  She was walking, running, jumping, and starting to slowly use her right hand.  And then...............we see the seizures.  Even if the surgery is successful at ridding her of the seizures, there is a laundry list of complications that come along with it. 

To read a bit more about hemispherectomys you can click here.  There is a bit of interesting information there.

Tuesday, November 15, 2011

day in day out...



So this waiting game really sucks for Ruby and the family to find out the total extent of the appointment last friday. It seems like it was WEEKS ago, but only a few days have been by. Of course for some CRAZY reason that we have no clue for, I personally haven't seen as many seizures as before. Of course its not something that is gonna "work its self out" but hope, dreams and positive thoughts are something that always keeps Sarah and myself going. We look as SO many different types of treatments for seizures but the heart breaking part about it is the surgery is the most effective way to manage them. Yeah, we could treat them this way or that way, but who knows when or where they could come back if she misses a dose of meds of blood sugar gets low. Of course as a parent and from my job, I always plan for the worst case scenerio, but it still doesn't make things easier. If it was as easy as making a decision on a fire or a home project, no worries, but this is something I, or even we have to live with for the rest of our life if "god for bid" something dosen't go as planned. Anyways, back around from a poor me post, This waiting game really sucks and ready for it to be done!

Sunday, November 13, 2011

Long Day

So this is Rubys dad, I am gonna chime in here and there, so I figured why not today. Well, Ruby had her PET scan on the 11th, and she was pretty much a little champ. She couldn't eat past midnight, but it was more like 630 the night before since she went to bed so early. We hit the ground running around 6am towards Stanford. The ride was a little rough, and sad since she was asking for food the whole way down. She was asking for things we never knew she could say! It was so sad. There was a melt down or two but we made it.

We ended up being pretty early, so we checked in and walked around the hospital for a while and never realized how big that place is. The whole time we had o do the food distraction game, we even starved with Ruby and about died, so I could only imagine how she was feeling. WE finally got called back and were asked a long list of questions, allergies and all that jazz, and finally met with the anestheisa lady. Ruby didn't know what to think cause there were SO many people in the little room, and 1 was so loud but so friendly. We ended up opting for an oral relaxing pre drug thing ( for Ruby not us ) and let it set in. We walked from the childrens hospital all the way down into the regular Stanford hospital to the scan room. The meds set in on the way, cause Ruby really loosened up and was pretty much saying HI and HELLO to anyone that walked by. She was doing great. Things got kinda awkward once we were going into the scan room with Ruby, one of the regular doctors was kinda mad about being late or something, so the childerns doctors kinda put that lady in check. We were able to stay in the room until Ruby got put under with gas and we were asked to leave after that.

We then RUSHED to get some food and wait out the long procedure, Ruby went under about 1230ish and we waited only till 230 i'd say. We were under the impression that the procedure was gonna last till 4! So 230ish we went back to recovery and there was an angry out of it Ruby. It was kinda one of those funny but sad moments. She slowly came out of the anesthesia and was so confused but finally came to enough to say things and want to leave. We got on the road 3-330ish and wow, traffic really sucks. We ended up giving Ruby tons of food to make up for the starving period and she wasn't about to stop eating either. We though lets get a milkshake for her by San Lorenzo and by the top of the altamont pass ,that milkshake and everything else she ate came right back out onto the carseat. Emergency manuvers to get off the road and got things taken care of. From that point on was an extreme cry session ALL THE WAY HOME!!! We were able to get home, clean her up and hit the sack by 8pm that night.

We already have a date set for the results on the 15th of December, and are excited and so scared to see what the out come of the scan is. Its just one step closer to getting Ruby the help she needs and taking care of these seziures.

Thursday, November 10, 2011

PET Scan tomorrow

Tomorrow we take another step toward ending Ruby's seizures.  I have been researching exactly what a PET scan is and it is really amazing.  Check out this link if you want to read more about it.

I was shocked to see that on Wednesday there were 592 people who read my blog post.  That just blows me away.  I know how much I adore my little girl and how my world revolves around her and her little brother, but I had no idea so many people would follow along with all of this.  It has truely been unbelievable.

It is hard for me to know what to write anymore.  I want to give all the information but now I feel like maybe I should sensor my emtional feelings about what is happening because I don't want to freak everyone out.  I know what many of you would say to that.  You would say not to sensor anything and to let it all out.  To be honest, I don't really know how to react to any of this.  I am terrified to my absolute core.  I shivver just thinking about what is coming.  I feel sick and dizzy and disconnected to my own body and mind.  I feel like I am just living in a total haze counting the seconds until we can be on the other side of all of this.  I just can't wait to hold my babies and thank God it is all over.  I can't wait to see Ruby playing without the looming fear that she may have a seizure and hurt herself again.  I can't wait for it to be something we look back on and hug each other and again thank God we made it.

Well, it's time for me to get the car ready for the trip tomorrow.  We are leaving Oliver behind with his grandparents and will hit the road at 6am.  Poor miss Ruby can't have anything to eat all morning.  Hopefully she will stay distracted with the drive.  Please keep us in your prayers.  Ruby will be going under general anesthesia for the test, which is always scary so please say and extra prayer for her tonight and tomorrow and if you have a moment, please say one for me and my husband, especially me.  I am a nervous wreck.... 

As I said before, we are at least getting one step closer to being done with this nightmare.

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

Saturday, November 5, 2011

Another Helpful Friend

Our friend Vanessa has put together a special eye shadow that has been dedicated to our little Ruby.  Check out her site if you want to buy one. 
Glamour Doll Eyes
Thanks V..

Friday, November 4, 2011

Shirt sizes available

The shirts are $25 dollars and you can pay to the right.  Please include your size, if you'd prefer the women's or the men's styel, mailing address if they need to be shipped, or an alternative way for us to get them to you.  When we get the shirts in, there will be some for sale at Caffe' Blossom in Twain Harte.  If they don't have your size I will order it.  At this point it takes about a week to get the shirts.  My first two orders will arrive sometime around the 12th or 14th.

We have had a fantastic response to the shirts.  Thank you all very much.  We hope you enjoy the shirts and that you think of us and maybe say a little prayer for Ruby and our family each time you wear the shirt or if you see someone else wearing it.
 
women's style

 
men's style

Link to buy the shirts

I have set up a link to the right to purchase the shirts that are pictured below.  Please email me with the size and if you want a men's or a women's style shirt.  We have a limited quantity right now but can quickly order more if needed.
It is difficult for Jason and I to ask for financial help.  It actually feels really strange and I know we are both a little uncomfortable with the idea of it, but unfortunately we are at the place where we have to do it.  So, the idea of the shirts came in.  If we offer something in return it doesn't feel quite so strange.  Either way, we are very thankful to anyone who can help out.  We do have insurance but just the co-pays are really adding up.  Also, with my new job, I don't get paid time off, so every day I am away is zero income.  It scares the crap out of me but I am absolutely certain we will get through it.
Yesterday Ruby had a few real doozie seizures.  Two of which got her so good that she came away with a black eye, a bruised cheek, and a fat, bloodied lip.  Poor girl looks like she was in some type of accident.  It makes me cry just thinking about it.  This is becoming an every day thing and is just solidifying the fact that we need to get this done soon.  Her seizures are becoming more serious so we have to get rid of them.  I get so angry every time I see one.  I just feel so increadibly helpless and as a parent that is by far the worst feeling that you could imagine.
So, instead of me just sitting at my computer crying I think I will sign off and try to be productive.
Thank you all so much for your support of our family. 
I can not wait for the day when we can hold our two healthy babies and look back on this time and thank God that we made it through.

Thursday, November 3, 2011

Shirt sale to help off-set some of the growing medical expenses

Here is a preview of the shirts I got to sell. I think they are pretty darn cute. It also is pretty symbolic because after Ruby's surgery the part of her brain that controls her artistic and musical abilities will still be intact but the other side that controls the mathmatic and logical reasoning skills will be gone.  So when I see the guitar I see all the artistic and musical talent that could still be there for Ruby to fully explore.


Also, when I see this I think of her and everything that is going on below the surface and all we see is the beautiful pink flower/her amazing personality. The roots may be damaged, there may be some missing, but what is above is thriving and making the best of what it/she was given.

Maybe I am getting too deep with it, but as soon as I saw it I knew it was a good representation of her and thought maybe other people may get it too. Also it is really just a cool graphic on it's own.

We are starting to get more and more medical bills and they are going to continue. Her PET scan is on the 11th and then after that we will meet with the neurosurgeon to decide what to do with the information we have. I can't believe this is really happening. I was just praying it was all a dream, but unfortunately it was no dream.

These shirts will be for sale at Caffe' Blossom in Twain Harte or from me directly.  I am not sure yet how much to sell them for.  I was thinking $25 but I really don't know what people would be willing to pay.  I would love any suggestions on a good price or maybe you want to buy one.  You can email me directly at sarahduncan123@hotmail.com

I got them in both women's and men's sizes
 

Finally got a date set

So, after over a month, we finally got the date for the PET scan.  It will be Friday, November 11th.  Thank God it is already my day off so I don't have to take a day unpaid at my new job.  It is amazing how although we are dealing with a truck load of crap, we still have little miracles happen that make me realize that there is a plan for us, even if it does really suck sometimes.

Wednesday, November 2, 2011

Still waiting...

I feel like I have been holding my breath for over a month.  We were given a hint that Ruby may need brain surgery about six to eight months ago by her neurologist's assistant and thought how crazy that was and that there was no way she would ever need that.  I actually was angry with the nurse for even suggesting that, and now here we are, waiting....

So we still have not even heard back from the hospital to schedule her PET scan.  I have called about five or six times and they keep saying they will call me back and I have only heard back once of the five or more times I have requested more information.  It is quite frustrating.  I know they don't know what it feels like to be a parent waiting in limbo.  They figure they can wait a couple more weeks when what they don't realize is that I am sitting on the edge of my seat all day, every day, waiting to hear back so I can get some answers.



I am now back to work full time.  This is throwing another kink in the whole system.  Not only do I worry about what is coming, but I am missing all that is going on now.  I am away from my babies all day, every day.  It is really hard to miss all her therapy appointments.  Thankfully I have supportive family who are wonderful about getting her to all her appointments and also it is great that both the therapists are less than a mile from everyone.  That is a true blessing.  It is just really tough not being there.  I have loved watching her blossom. 

  






Thursday, October 13, 2011

Another fat lip

My poor little lady.  I think the new medication we started, which I was hoping would finally be the answer to our problems, is actually making her seizures worse.  It seems like she is totally blacking out instead of just a little blip.  On top of that she is having unbelievable tantrums that last so long.  She never did this before we started the new medicine.  So I will be calling the neurologist to discuss taking her off this medicine.  It is definitely not working.
These stronger seizures may not be caused by the medication and may just be the natural course of the progression of her epilepsy.  As I wrote before, the more and more of them I see the easier it is becoming to accept the surgery.  I hate seeing her body go limp over and over again, especially when she injures herself. 
I found a fantastic facebook support group through the Hemispherectomy Foundation.  I posted my situation have had a ton of response from families who have already gone through this.  Their stories and encouragment have been so helpful.  I know that our little girl may face some new challenges because of the surgery but the seizures will not go away on their own and are only getting worse.  She will be so much better off without all the medications and seizures. 
I just want to get on with it and get it all over with.....

Sunday, October 9, 2011

Cute smile to fat lip

Today was both wonderful and dreadful.  This morning we had some photos taken by my friend Stephanie Godfrey (Check out her blog too) and it went so well.  The location was awesome.  We did it at the Tuolumne County Museum.  There were fantastic spots to do the pictures with beautiful old brick walls (the old exercise yard of the previous county jail) and the lighting was just perfect.  My kids both totally cooperated and Stephanie was increadably patient and I am certain she got some fantastic shots.  I am dying to see them.  My in-laws came and did a great job at getting the kids to smile and laugh and we got some good pictures of them too.  I really don't know what I would do without them.  They are wonderful and my kids adore them.  So that was the good part of the day......

A couple hours later we were playing in the living room when Ruby suddenly had a seizure.  She must have completely blacked out because she went down straight on to her face and put her top teeth through her upper lip.  Not all the way through but I still had to pull the teeth out of her lip.  It was a bad moment for sure.  So now she is walking around with a fat lip.  Poor little girl.  It just makes me SO mad!  I am so angry at the seizures and it is just getting really frustrating.  I know that considering such a drastic surgery to remove half of her brain seems crazy and unrealistic, but I am getting to the point that I want to at least get the ball rolling.  It may not be that drastic but it may be.  Either way, she can not continue like this.  It makes me nervous all day just wanting to be within arms length in case she has one so I can catch her.  But obviously I can't do that.  She is 2 1/2 and wants to run everywhere.

I know I am going to deal with many fat lips, cuts, bruises, and such with Ollie.  But it is so different when it is from him playing and hers is from blacking out with a seizure.  It just makes me SO MAD!!  Did I already say that???  Well, it's the truth.  I am angry and feel so helpless.  I know there is nothing I can do and it is a horrible feeling when you know your child needs help and you can do nothing.  I am sure there will be many times in my life I will feel this way about my kids but it just hurts my heart to see her like this.

Someday these seizures will be gone.... Until then I will continue to vent my frustrations, anger, fear, and sadness to anyone who will listen or take the time to read this.

Saturday, October 8, 2011

They're back

It is so hard not to get my hopes up when we have a good day.  The new medication we started Ruby on worked great for the first couple days.  It really cut back the seizures to about one or two a day (that i noticed).  Now I am seeing them again and it is so frustrating.  I feel like every time I see another one it is like a slap in the face; a reminder of what is to come.  We will be going along with a fun day, without a thought of the impending surgery and then WHAM--- a sudden jerking reminder of reality.  I try to ignore them so that she won't get upset and so that I don't get upset but it is really difficult.  They do seem to be getting stronger and stronger and it just makes me realize that what we are doing is right.  We need to help her before it gets much worse.  I can't imagine seeing her have major seizures.  It really scares me that she may have one someday and I wouldn't know what to do. 
I have not lost all hope for this new medication.  We have still been building her up to the full dose so we will have to increase her to a full dose starting in a couple days so maybe there will be better control but the problem is that this medicine makes her so drowsy and really whiney, like worse than I have ever heard.  I hate that I have no idea what she is feeling since she can't tell me.  Tonight at dinner she was holding her head like it was hurting and then she had a seizure while sitting in her high chair.  I have heard that some people will have symptoms or indicators that they will have a seizure before it happens.  Maybe she starts getting pains in her head, I have no idea.  It is so frustraing. 
We still do not have an appointment for her EEG.  I got a letter in the mail from our insurance company notifying us that Ruby's hospital no longer is a "preffered" provider and so we couldn't go there.  I spent a half hour on the phone with the insurance company trying to find another place for her to get the tests done.  After that time the operator finally says something about how they are just waiting on the hospital to sign the contract for services and that they will most likely have it signed within the month.  I was in tears on the phone thinking we were going to have to find a new place for her tests and a new neurologist for her to finally tell me that it was just about the contract.  We have blue cross, so if that hospital didn't renew their contract they would be losing millions.  Now I just need to find out if they will pay for telephone appointments. (just looked- they don't)  We will still be getting a few different opinions.  I keep going back to the children's hospital in Boston.  It seems so far but I keep reminding myself that it is the best place in the nation (part of Harvard medical school) and is renowned for their pediatric neuro. department for seizures, strokes, and all other neurological problems.  I was looking at air fare and hotels/condos and it will cost SO much money but no matter what, if we have to go there, we will make it work: somehow.

Thank you all for your support and your interest in our little girl.  This is quite a difficult ride and is totally stalled out right now.  It is horrible just waiting.  I wish we could just get it over with and get on with our lives.

Saturday, October 1, 2011

Another new medication

Well, a bit of potential good news.  We started Ruby on another new medication to get rid of the seizures and except for two very little ones, we were nearly seizure free today.  There are usually about 20 or so.  This has happened before so I am trying not to get my hopes too high, but it would be so wonderful if we didn't have to do the surgery after all. 
The process of preparing for the surgery and getting all the second, third, etc. opinions does seem like it is going to take longer than I thought.  I was hoping to just get all the information we could, make a decision, and get on with it.  Now it seems that it could be over a month until we are able to get the PET scan, which has to be done before we even meet with the neurosurgeon and send away for a second opinion.  So, I guess I just need to try to relax a bit instead of being so amped up all the time.  I just feel like I am rushed to collect all the necessary information, find any potential clinical trials, research doctors and hospitals, and try to maintain a somewhat normal life all while Jason is away.  He has been gone for 11 days now but thankfully he will be home tomorrow.  This has been rough without him home.  I will be so happy to have him home.  Last night Ruby asked to give him a kiss before bed and it was just so darn cute.  Unfortunately she had to settle for me. 
 On a lighter note, Oliver is so funny.  His new trick....


Ruby loves to pretend talk on the phone to "dosh" (uncle Josh)


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.