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.