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.
Here is a little about the hospital

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.