Monday, December 17, 2012

Amazing things are happening

We have not been very good lately about posting all the amazing things that have been happening.  I thought a quick video could lift your spirits if they need to be lifted.

Here is Ruby reading "Brown Bear, Brown Bear, What do you see?"


Believe it or not, this was only the third time we had ever read the book.  This was a couple weeks ago.  She has it memorized now, which is something I had really be concerned about.  With Ruby's hemispherectomy, as I always say, there are so many unknowns.  We hope for the best with her cognitive skills and abilities, but just don't know.  One concern her "team" has had was her inability or lack of interest in memorizing songs or rhymes.  She still doesn't really sing along with her friends and doesn't really sing with me like her little brother does, but I have to remember, she is Jason's daughter too.  I don't think I've heard him sing a word in the 12 1/2 years we've been together.  So, maybe that is just why.  But, the other night I laid down with her to read and thought I'd pick a new book and she loved it.  She was reading along with me after only a few pages.  This brought tears to my eyes becaues it really showed me a level of cognitive development and maturity I had never seen.
She continues to blow my mind.  Her explainations of things and past events has become more and more detailed.  Her more complex thinking abilities are becoming more and more aparent.  It is fantastic!

I only had a moment to update you so I will try to do another more detailed soon.

I have taken a few other video

Tuesday, November 13, 2012

Clean Bill of Health

I am thrilled to announce that we met with Ruby's neurosurgeon and neurologist last week and were given really good news.
As far as the MRI can show and as far as we have seen, the surgery has been a complete success!  Ruby has be seizure free for 8 months now.
I can't even begin to express my relief from the meeting with the neurologist.  It seems as if every time we have met with him we have been given some sort of difficult news to digest.  Friday was a good day and it was great to see the doctor very pleased with the outcome.  I am sure the theoretically the surgery always seems like a good idea but the outcome can never truly be known until afterward.  I have to say that Ruby's hemispherectomy seems to have been a complete success.  It is hard for me to really embrace it and believe it.  There is always a little place in my mind that tells me it is really too good to be true.  There is no way that everything could really be this amazing, but it is.
Ruby is doing absolutely amazing.  It is as if we all prayed for the absolute best case scenario, really shot for the stars, and God said, "Ha, I can do you one better.  Watch this!"  And WHAM-O here she is exceeding all our wildest dreams by leaps and bounds.
I would really like to share more of how well Ruby is doing, such as physically and mentally but I only had a short moment to share our good news for today.  I will try to get some video posted and also some super cute family pictures.
Thank you all again so much for all of your love and support.  Please continue to keep Ruby in your prayers.  Over the next 8 weeks we will be weaning her off of her seizure medication so the next couple months will truely be the moment of truth.

Wednesday, August 15, 2012

Time flies...

Sorry we have not been keeping this updated. Jason and I have been talking for months about how we need to post some updates on our family situation. I guess because things are going so well we haven't really taken a moment to tell everyone how we are doing. It also made be just a lack of time. He has been busy since it is fire season (and he is a fire fighter with the US Forest Service) and I am back working full time and taking care of the kids.  I spend a lot of time on the computer at work so getting back on it when I get home is very unappealing.  I guess that is why it has taken me so long to finally write an update.

As expected the whole situation with Ruby really put my life into perspective. It made all of the things that used to seem so major, now are very inconsequential.  It also made me take time out for the important things in my life. I appreciate things more even the simple things like one day with no illness or nice weather. I pray a lot more and not so much asking for things but just thanking God for all of the blessings in my life. I try not to ask for too much these days. I feel like I have asked for a lot this past year and now I am trying to spend time just being thankful for what I have.

Ruby is doing amazing. She's running around and playing with her brother as if nothing ever happened. She is as feisty as ever and brave trying new things.

She is speaking a lot and putting together more complex phrases and thoughts. She seems to be catching up with her verbal skills but to me, seems to still have a difficulty with the concept of past, present, and future.  I am not sure if this is just normal development or if there is some delay because of her surgery and stroke.
I worked in preschools for a long time and there were children Ruby's age who could not speak as well as she can and they were developing normally. But I also see many children who are her age who have much more complex thinking than she does and who also can talk much better as well.  It is so complicated and there are a lot of unknowns.  But we are just taking one day at a time and working with her every way we know how.  Like everything with her, there are a lot of questions with no answers. There is no way to predict what comes next.
We have had a fun summer.  When the weather isn't too hot we try to spend a lot of time outside playing in the back yard.  We have a great little swing set and the kids really enjoy it, especially Ruby.  Oliver spends most of his time outside exploring and trying to figure out how everything works.  He could care less about sitting in a swing, where as Ruby would sit in it all day if I'd let her. 
The kids also participated in the county's Youth Track Meet in June.  Once again Ruby ran with lots of enthusiasm.  She seems to really get a kick out of it.  Not half as much as I do.
Oliver saw a big pile of branches and brush at the far end of the field and thought it would be more fun to go check that out.  He didn't get a ribbon but he sure seemed to have fun.
Ruby starts preschool in September, which I am very excited about. She is going to get speech therapy and also some special education services. We aren't really sure what she will need and how much special attention she will need until she has been there for a little while. I am excited for her to try preschool. I don't really know what to expect or how well she will take the transition but I am hopeful. Luckily the preschool is right next to where she has her physical therapy so it will be very convenient for our family and she will be able to continue her physical and occupational therapy.
Once Ruby starts school I think we will be able to get a better idea of where she is developmentally. All of the assessments that have been done are not a good judge of where she is because she does not perform well when someone is at our house asking her to do specific things. I am hoping that with a little more specialized help and more assessments we will have a better understanding of where she is and different ways we can help her if necessary.







Ruby got a new pair of braces this summer.  She is doing great in them.  They are hinged in the back, which allow her to bend her ancle.  Before this, she was quite limited in how she could walk and run.  She has gained a lot of confidence in her abilities to run and jump off of stuff.  It kind of freaks me out sometimes.  You can see her jumping off her steps in the video on the top of the page.
I want to thank all of you again who have supported our family.  If it hadn't been for the donations made to our family we would be under a whole different level of stress.  Taking the financial burden off our shoulders made a huge difference for us.  For instance, our share of these braces she got this summer was $900.  Her feet are growing so quickly that it is likely she will outgrow them in a few months.  Her last ones lasted six months.  I am budgeting that we will have to get new ones every six months or less.  But thankfully we still have some money left from the donations and so we don't have to worry about the cost, and get to rejoice in all the benefits.  It makes a big difference when we can look at her braces with excitement instead of dred.  Thank you again so much.
I am truely blessed to have two wonderful children.  They are learning to play together more and more.  Oliver is starting to talk as well and it has been fun hearing him learn new words and be able to communicate with us a little better.  I love these two little ones and look forward to all the adventures we have in store. Thank you again for all of your love and support.  I will try to update this as Ruby begins school.  I hope you had a great summer. All my love - Sarah

Ruby and Jason on Father's Day at the Columbia Airport Father's Day Fly In. 
Ruby loves airplanes so she was very excited.




Thursday, May 24, 2012

A couple new videos of the kids.

Things have been going so well for our family these days.  Everything seems to be getting back to normal.  Ruby is running around like a typical 3 year old and Oliver is growing up so quickly, trying to talk and keep up with his big sister.
Jason is working hard and fire season is just around the corner so he will be extra busy very soon.
My job is going great, just also really busy since our summer season is packed with activities and challenges.

Thank you all for following along on this ride with us.  I hope you enjoy these quick videos.



Saturday, May 5, 2012

Ruby sending a message....


So Jonathan from the Deathtraps is riding his motorcycle somewhere in Europe right now, by himself, and we decided to email him these pics, to remind him of home and  to ride safe and he has people back here to come back and share his stories with...


I also cannot remember if Sarah or I have put this out there, but if you bought a shirt from us to support Ruby, we would like to get a picture of you wearing the shirt so we can make a book to show Ruby how many people came together for her, and tht won't even be the tip of the iceberg of all the thoughs, prayers, and kind words that were sent our way. Shes doing SO amzing I don't really know where to start!! We have talked about how bad we feel not keeping up on this as much, but we are just soaking up the new and improved Ruby2.0 . Please don't forget about us as we will be posting more pics sooner than later. I am in the process of putting a fence up in the front yard so Ruby and Ollie can have races without heading straight for the road.

Friday, April 27, 2012

Normal days...

Well, we can believe how amazing this surgery has been for Ruby and the rest of the family. The next stage in this whole journey is the getting rid of the meds, but things are already back to, if not better than normal. Ruby has been running around terrorizing Ollie a bunch, trying to be a helpful big sister. Sometimes she comes off a little too strong for him though. We really have just been enjoying seeing Ruby grow, and develop mentally and physically so fast, that we have slowed way down on here. We wanted to let everyone know really appreciate eveyone looking here and checking up on Ruby, and we haven't forgot about you guys or this blog. Just trying to keep up on the normal days now......

Sunday, April 15, 2012

Finally getting some videos posted!

This was ten days post hemispherectomy, enjoying
her favorite snacks, yogurt and strawberries.
She was really thin and weak.  She lost a lot of
weight due to 12 days without eating anything.
She is now growing like crazy and making up
for it all. 
Oliver was so happy to be home and have
everything back to normal.

The video above were at our apartment in Palo Alto.  This was ten days after surgery.  She was still really weak but her spirits were much higher.


This video is from home.  She is strong, energetic and spunky.  She loves running around and playing with her brother.  Things are going great!

Monday, April 9, 2012

Ruby in her new helmet

Playing outside at papa and Mimi's house. Gotta have the helmet to stay safe!

One month post operation update

It has now been just over a month since Ruby's surgery and things are going wonderfully.  She is up and running as if none of this ever happened.  She is strong, happy, and healthy. 
I feel bad that I haven't taken the time to keep you all updated after the surgery.  It is as if our family is finally getting a chance to relax without any worries.  The hospital bills and lodging bills are paid and we are both back to work.  It is hard to believe that all the stress and anxiety I was carrying is finally over, hopefully forever. 
Thank you all so much for your prayers, hard work, and financial donations to our family. 

One thing I was thinking of is that I want to put together a book for Ruby of the journey to the surgery, during the surgery, the recovery, etc.  I was hoping to put together a collage of pictures of all of you.  I was thinking that if you bought a Ruby June shirt it would be awesome to have a few pages with photos of you wearing your shirt.  Or, if you didn't wear a shirt you could just include a photo of you and your family.  It would be amazing to have a visual representation of all the support she had from all over the world.  I am not sure if she will be able to understand how much support she had until she is older but I thought it would be pretty cool for her to be able to look at that book and see how hard she had to work and how much love she had coming from all of you.
If you want to include a photo of yourself, your family, please email it to ruby.june@hotmail.com
I am hoping to start this in a couple weeks, so if you want to include a photo (please do), send it within the next few weeks or so.

I will try to include periodic updates as to how she is doing, but since things have gotten closer to normal, I have not really thought to update the page here.  Thank you all again for your prayers to Ruby and our family.  All of your support has really changed my life and given me a new found faith in God and in the power of a loving community.

I look forward to seeing your pictures.  I will include the final collage when it is complete.

One more thing.  I want to send a special thank you to my fellow Tuolumne County employees who anonymously donated sick leave to me while I was away from work.  I can not believe how generous you all have been.  I had over 150 hours donated to help cover the time I couldn't be at work.  People can complain all they want about working for the government but I am so thankful to be back and feel very lucky to be working alongside some of the most generous people I have ever met.  Thank you, thank you, thank you!!

Have a wonderful day.

Thursday, March 22, 2012

Therapy time

We just finished Ruby's second therapy session. It went so well. She has jumped right back in as if we were never gone. Her occupational therapist said she thinks Ruby's right hand may even have improved since the surgery. Her right leg is weaker but nothing too noticeable.
I hope to add some videos and photos soon.

Saturday, March 17, 2012

Home at last

After 23 days away we are finally home.  What a horribly long arduous and exhausting adventure.  I can't describe how wonderful it is to be home and to be able to begin to get our life back to some sort of normal. 


Ruby is recovering in many different ways.  Physically, she is recovering faster and better than we could have ever prayed for.  She is up and walking around almost as if the surgery had never happened.  She does have some more weakness in her right leg.  All the work she has done on walking up and down stairs is going to have to start over.  She doesn't have the motor control of her leg/foot that she had before so going up even just a small step is more challenging.  But it doesn't seem to bother her and she is working hard and playing hard again, especially today.  Every day is exponentially better than the day before.  Now the emotional part of her recovery is taking a bit longer and is something I had not planned on or prepared for.  She has been through such a traumatic experience that it is taking a bit longer for her to really relax and get comfortable again. 

Jason and I got to go out together today, just the two of us and have lunch and see a movie.  It was really nice to spend time with him without any worries.  It has been a VERY long time since I was able to go out somewhere without a really heavy heart and without a million worries.  We saw 21 Jump Street and although the previews weren't totally great it was probably the funniest movie I have ever seen in my life.  I know, those are big words but seriously, I have not laughed that hard in years.  If you get a chance you really should go see it.  I'd go again right now.  My face hurt for over three hours after leaving the theater from smiling and laughing so hard.  I thought maybe it was just Jason and I and maybe the movie wasn't really that funny.  I thought maybe it was just because we really needed a good laugh and we were finally loosening up a bit but no, it really was that funny.  The audience was screaming with laughter over and over again.  There was a point where I literally could not catch my breath....  Obviously I liked it and really did need a good laugh so it served it's purpose.

Oliver is doing fantastic now that we are home.  He is such a happy mellow little guy.  He is definitely happy to be home as we all are.


Jason and I can not thank you all enough for your prayers and all your well wishes.  Our journey with Ruby is certainly not over.  Her recovery is going to take a lifetime but at least this part is past us and we can begin a life free of seizures.



Just had to share this one too.  He is such a ham saying "cheese" for the camera.

Saturday, March 10, 2012

Released from the hospital

Ruby was released from the hospital today.  We got back here to our apartment and will be staying here until after her post-op appointment on the 15th.  She is already doing so much better, just since we got here to the apt.  It has been amazing how quickly her status has improved since we got out of the hospital.  She was totally retreating and not communicating nearly at all while in the hospital.  It was scaring me, but today she proved to me that she may not have lost much at all.
The most dramatic loss is her physical strength.  She looks so skiny and has very weak muscles.  I am going to work on getting her fattened up and get her braces back on her ancles/feet so we can get out walking again.  She wants to walk but when she does it doesn't feel good because she is so weak and I am certain there has been some changes in how her leg and foot feel.  We won't be back to physical/occupational therapy until we get home so hopefully we can get her up and walking soon.  Right now she is just starting to interact with us again so the therapy at the hospital was not effective at all.  She would just scream the whole time and not participate.  It was much like the first few months of therapy at home, but even much worse.  I am sure she will do much better when she gets home and back to her two favorite therapists.  The hospital wrote a prescription for Ruby to get therapy one more day a week (total of three days) and now included speech therapy, so hopefully we can get all that sorted out soon and get our little lady back up and running.

One of the most beautiful things I ever saw was when we got back here to the apartment and my two babies caught each other's attention and instantly were hugging and laughing.  It was so darn cute!  It really was one of the most wonderful moments of my life.

I will try to add some photos and video soon.  It has been a long day and the kids + grandpa Bill are already in bed.  I think we are all so relieved to be out of that hospital we can finally relax just a little.  I know that Jason (and Ruby) is the happiest of all.  He spent the whole time sleeping in crappy little reclining chairs or on a weird fold out couch in the hospital room with nurses coming in and out, clicking and beeping, and crying kids all over the place.  That king sized bed is going to be wonderful for him.  Unfortunately, Oliver has been waking up every hour or so.  It has been exhausting for me.  We all are in major need of a good night sleep so I think I may wrap this up and get ready to get in my pjs and veg out. 

Thank you all so much for following along with us on this major life changing journey.  I know the worst part must be behind us but there is still a long road of recovery ahead. 

Friday, March 9, 2012

Seizure status...

I realized today that I haven't mentioned anything about Ruby's seizures.  We have been so focused on her progress and getting her to interact, eat, drink, etc. that we have failed to really soak up the fact that we have not seen a single seizure since the surgery.  I guess we were both so confident that they would be gone that we still have not taken time to really rejoice in the reality of the main purpose of this whole ordeal. 
It is really hard for me to go to the hospital.  It is difficult to see my little girl so withdrawn, sad, and tired.  For me, the most difficult part of this whole thing is that she can't and won't communicate with us to say what is wrong.  She is still so young she can't tell us if she is in pain and if so, where it is coming from.  This is really difficult because when she is really upset we just have no clue how to help her.  It is the worst thing as a parent to not be able to help your child, as many of you already know.  Just standing on the sidelines as they are in agony is absolutely heartbreaking.  I feel like my heart has broken about twenty times in the last couple weeks.  It is going to take our whole family a while to heal from all this, not just Ruby.  It feels like we have all been at war and are just waiting for the chance to come together and begin the emotional healing along side Ruby as she has to heal both emotionally and physically.
I am SO looking forward to the time when we can get home and so some things to heal our hearts.  Jason can go space out in the garage working on his motorcycle and I can get my hands dirty pulling weeds and putting some much needed colorful plant life in our yard.  Walking around the hospital grounds is quite inspiring.  The landscaping, even in the small patio areas is just so beautiful and serene.  We have been trying to get Ruby outside as much as possible but there is only one little area we can get to which is the courtyard in the center of the hospital.  It has a huge fountain and is completely surrounded by stunning flowers of all varieties.  It is a really nice place to walk, even thought it is still pretty small.  I hope to get her outside there at least once or twice more today.  Hopefully we will be going home tomorrow, but if not Ruby's papa and mimi (jason's parents) will be up this weekend (hopefully) so they can join us on our little walks in the garden and help perk her up.  It is therapeutic for me.  I am hoping Ruby will enjoy it a bit and at least open her eyes to see everything there.  Oliver sure seemed to like it.  We brought him to see her today and yesterday, since he is feeling so much better.  I was hoping it would help her a little but she just seemed annoyed with him.  That will change soon I am sure.  They are BFFs and will be wrestling again soon.
Thank you all for your love and support.

Thursday, March 8, 2012

A few final hurdles

We are waiting for a few major things to happen before we can bring Ruby home.  She needs to start eating and drinking better.  She has greatly improved eating but has been refusing to drink anything.  This morning she had a big bowl of oatmeal but it seemed to me that there may be some numbness or weakness in her mouth because it was upsetting to her at times to eat.  It may be feeling weird, which also my contribute to why she doesn't want to drink anything.
We are hoping that she will be released tomorrow, but it all depends on if she will eat and drink.
The photos and videos we have been posting were just a brief moment of happiness.  In general she has been really tired and mostly wanting to cover her eyes.  We have tried going for walks but today she mostly cried and covered her eyes.  I had to leave the hospital and take Oliver back to the apartment and at that time she was just really tired.  I am hoping she perked up for Jason after I left.
It has been such a challenging week.  I have felt awful because I feel like I keep abandoning jason and ruby because I have to take care of Oliver.  Although he is not sick anymore, he still doesn't want to eat food so I am still in charge of nursing him every time he needs food.  Not only is that physically exhausting, it is really emotionally draining.  I feel like a piece of paper, torn in two, not fully able to be anywhere completely.  When I am with Ruby I am worried about Oliver and when I am with him I am feeling guilty about ditching Jason at the hospital.  He has been there for almost ever single hour since we arrived here.  I know he is completely over it and it is frustraiting for both of us that I can't relieve him more.
He is doing a wondeful job.  I can't imagine being in his shoes.  I just hope we get to bring her home soon so we can all get a change of pace and so she can get out of there.  I know that she must be so sick of that place.  She needs to be in her normal environment and get to play with her brother. 

Wednesday, March 7, 2012

some new pics

here are some pics from my brother ( uncle josh ) glad he caught some of her more recent happy times

Tuesday, March 6, 2012

Finally a chance to snuggle

Rubys first time out if bed and out cold snuggling with mommy

Here's Ruby....


Well, minus looking like she's ready to be jumpstarted like a car battery, she is so beautiful. This morning was a great one, ate a couple crackers, able to sit up on her own for a little bit, did some good interacting and she even was using her right hand on her own. We just got word they are gonna be taking her off I.V.s and hopefully get that brain drain pulled off her noodle today too. That would give her so much more freedom and we might be able to go on a wagon ride later. Yeah!!!!

Monday, March 5, 2012

start of a new day

So Ruby is doing great for every one wanting to know. She is in a tie for the strongest woman alive right next to Sarah for giving birth to both beautiful kids we have and being my wife. As far as looks go, I think Ruby is looking beautiful as soon as the brain drain goes away, shaved head and all. She is doing well for what she has been through. For Rubys standards, she has been very abnormally quiet, which Dr.Edwards reassures us that its gonna be alright. Remember she has just been through a huge surgery and has had some of her brain jacked with, don't expect her to be winning any spelling bees or beating Einstien in any physics theroy competitions QUITE yet....could happen though down the road. She responds to wanting water or wanting her bear, but other than that is very quiet. It definately breaks my heart cause I wonder if its her throat that hurts from being intubated or its just a side effect from the surgery. Dr.Edwards says expect it for at least 7-10 days, but its still really sad and scary.
I can see deep in Rubys eyes though that she is gonna be the same little spitfire she was just a few days ago, ready to rule the kid kingdom at our house when we get home. I can't cait to see her like that again. Oh yeah..the whole purpose of this surgery....NO SEZIURES STILL. Granted I can't put the cart before the horse, but its great news and reaffirms us moving ahead with this surgery.
Ruby is getting a little groggy and ready for bed...I just hope I will be able to catch her talking in her sleep one day on video. The other night right before surgery, she was saying ball, airplane, bubble, "my blanket" and even " SWIPER". I though I broke a rib trying to hold in my laughter with everything. Every time I look at her, I keep realizing that I have the most amazing family, and how strong they have all been through this journey, and I wouldn't want anyone else in my corner for a fight, big or small. Its these things that definately wear on a family in good and bad ways, but these outcomes are the ones that bring familes together closer and tighter. I love them all. Hope I can get a pic of Ruby tomorrow, she looks great and the swelling doesn't look as bad as before. She is beautiful.

A moment of your time

Please take a moment to go to http://www.thepetitionsite.com/1/SaveCCS-therapy/ to sign the petition to save therapy services for Ruby and her friends.

Thank you

Sarah

Sunday, March 4, 2012

good night

Just spoke to Jason and he said Ruby is doing great.  Everything is going wonderful.  they are starting to take out tubes and wean her off meds.  She is now basically just on Tylenol and doing well, just sleeping. 
As Jason wrote last night, she has already shown us that she has movement of her right side.  She was using her right foot to scratch her left, which was the biggest worry.  Hopefully we can just keep the pain low, start introducing liquids, and start seeing her smile again.  I can't wait until she can start eating regular food and playing again.

As for Oliver, his fever is gone but his cough is just as bad if not worse but in general he is doing much much better.

I can't wait until we can get home and let the kids play together and get back to some normalcy.

Thank you all for your love and support.  We will try to keep you updated as things proceed.

Saturday, March 3, 2012

Moving Forward

So I am sitting here with Ruby back in ICU, not for a bad reason, she is coming off the drugs for the MRI earlier today. Today even though has still been a little tense, NOW as I write this, is starting to feel more and more easy and the right thing to have done for Ruby. It was a little hard to see her intubated today but its out and shes doing better. She is doing better, still kinda sick and all, ( which she gets from her mom ) from the meds. The other night was hard, with all the scratching and all and being ready to get out of here. We hardly got any sleep. She did bring a great smile to my face and a little choked up cause she was talking in her sleep. She was saying things like ball, bubbles, airplane and my favorite of the night was swiper....from dora! I would have loved to see what she was dreaming about.
We have had some great visits today from family and was able to show off a little for them by wiggling around in the bed to let them know she was fine. I think my favorite part was to see her moving her right arm and leg......ALREADY!! I don't want to put the cart before the horse, but I think there is gonna be SO LITTLE issues or side effects from this. It brought a tear to my eye to see. She was already scratching her left leg with her right, it was amazing. So that is a HUGE thing to see. She is a brillant star in my life and is a huge insparation to us, to show everyone that you can overcome anything in your life. No matter if its just squeeking by or a huge mile stone like this, anything is possible if you put your mind to it.
The love and support has been so amazing, from friends and family, to everyone that put on both benifits ( Deathtraps MC and Pokers tattoo), we wouldn't be here in such good hands if it wasn't for each and every one of you. We love you all and can consider all yourselves a part of our family.
Hopefully Ruby and I can get into our own room soon and get some of the tubes taken off her arms, so she can rest in more comfort than now. I'll try to get pics of her soon, just not when she's all swelled up and hardwired.

Friday, March 2, 2012

Finally a moment of peace

Ruby is now in the hands of the surgeons and other doctors/nurses.  She has an amazing team who have given Jason and I a lot of confidence in them.  Ruby had a very rough day yesterday and last night.  She was very itchy, especially her head which has been wrapped up in gauze so she couldn't scratch it.  The inability to scratch a major itch was making her a bit insain, as any of us would be in her shoes.  She was angry all day and night because there was nothing she could do to get rid of the itch.  No amount of meds would alleviate her discomfort.  So, although it was incredibly difficult to see her wheeled away by the anesthesiologist and nurses, she was finally resting comfortably for the first time in over a day.
She will be kept fully sedated until tomorrow, so jason and I can get a little rest.  It is a very different experience today from Monday.  We were both terrified and would barely leave the waiting room but after such a long week and hardly any sleep we are both trying to use this time to reboot and relax a little.
It has been so hard for both Jason and I.  This week has not gone anywhere near what we were planning on.  I was hoping to be able to releave jason during the day so he could get a break but I have been busy every second during the day trying to get Oliver to feel better.  He was feeling fine on Sunday but on Monday he really took a turn for the worse with fever, coughing, and shallow breathing.  He won't eat anything but breast milk from the source so whenever I have been at the hospital the entire time I was there I knew that Oliver would not be eating and most of the time I was there with Ruby, Oliver was miserable, crying, etc.  So my mom took him to the doctor on Monday while I was in the waiting room with Jason.  He was super dehydrated because he refused to eat or drink anything so the dr. gave him some fluids in a bottle and of course he took it from them but no one else... ugh...  But then Tuesday he took a turn for the worse in the evening and my mom and I ended up with him in the ER for over 4 hours.  He got a breathing treatment and some ibupropin and then sent home.  The next day we took him back to the dr. b/c he was still feeling bad and they said if the fever was still there Friday to return again.  Well it's friday and he still has the fever, cough, shallow breaths, etc.  so we are going back.
It is awful that I have had to spend so much time at appointments with him or taking care of him because then Jason has been at the hospital alone nearly the entire week.  It breaks my heart every time I had to leave him but I know he and Ruby were in good hands at the hospital.  I just feel so torn between the two kids, and unable to really help either of them.  It is absolutely exhausting.

So we met with both the neurologist and the neurosurgeon yesterday and we got the run down on what they are doing today.  The result of all the testing was that the seziures were coming from the entire left side so it will all have to be disconnected and/or removed.  It sounds worse than it really is.  The tests also showed that the left side was already majorly comprimised by the stroke she had so they assured us that the physical side effects and the cognitive effects of this surgery are going to be mild.  The physical weakness that she will likely experience after the surgery will improve with therapy and should be back to where she is currently in a few weeks/months.  The cognitive changes should be minimal so it is unlikely we will notice any deficits.  The number of seizures she was having were going to cause much more long term damage than the surgery.  The doctors said that the 20-30 seizures we were seeing every day were only a small fraction of the ones she was having.  Most of them were only effecting her brain but not translating to a physical movement.  It just confirmed why we are doing this and that it is the right thing.

I am not sure when I will be able to update this again.  I will try to keep you all posted as to the condition of both kids.  I just can't believe I am having to worry so much about both kids.

Thank you all so much for your prayers, the food you made/had delivered, the gifts you made/sent, etc.  We are so lucky to have all of you.  It has been really rough, I won't lie or candy coat it.  We have shed more tears than I expected, we have been much more frustrated and angry than expected, and we are not even half way through this whole ordeal.  I am sure we will experience some major crap the next couple weeks so if you don't hear from us for a while please be patient.  This is the first moment I have had to even think of updating this, and with Oliver being sick, holding the computer or trying to type is impossible.  So again, please be patient. 

We love you all.

Wednesday, February 29, 2012

Wednesday...day# too many.

SO...We have managed to make it all the way through the night in our own room. It was pretty much Ruby and I all last night since Ollie and Sarah were in the ER. He had some "breathing thearapy" to help him along with his funk too. Ruby is good as she can be. We lagged on a med time and she got cranky and sore, but we were able to catch everything back up and shes back to better spirits. Always have that Dora handy I guess to save the day too. I think my favorite times of the night was when a guy came in at 1130 to do an Xray on Ruby in bed. He wanted things to be SO perfect, and I had to keep telling him, "She's a 2 year old, strange place, drugged up, trying to get a xray in a bed...how perfect do you need it man, come on." then he quit and left for the evening. About 130am a guy ,Pat I think, Said time for an xray, did everything I was trying to help the other guy with and was out in no time flat. I was way more relieved to have him, way more understanding! Slowly through out the night, Rubys left side of her face started to swell....which is normal....but it got to having her left eye swollen all the way shut. I could tell it was making her upset, but this mirning in the last hour or 2, the swelling is slowly subsiding and I can see her eyeball again. So that a plus. Its hard for me to have to see her this way in pain and swelled up like this. If I could trade places I would do it with out blinking an eye. She is our little trooper and shows us that no matter what is dealt, as crappy as things could be, it gets better. Maybe not right away, but time heals everything and soon enough this is gonna be a distant memory and a normal life can begin for ruby. All I got to say is 3 days and a wake up till the worst is over.

Tuesday, February 28, 2012

Can't we catch a break?



So we finally got our own room on the 3rd floor which has been great for the last 4 hours. Ruby finally started to get cranky cause of no pain meds around 7pm and that was taken care of real quick, so shes in a better la la land state now chilling with her Dora videos.


Poor Sarah and Ollie on the other hand.......SO around 4 or 5, Sarah ran home to feed Ollie and grab some things to settle in, and now going to the E.R. Before anyone gets scared, hes o.k., well sick but ok. This virus/cold/ what ever it is has been kicking his little butt for a while now. So as I write this, Sarah is with Ollie downstairs while I am with Ruby upstairs. They wanted to admit him cause they think he might have pneumonia or something of that sorts, SO we both are gonna be on hospital duty for tonight I think. I really wish Sarah and Ollie could catch a break and just be able to relax and think of Ruby instead of this! I am not sure what else is gonna be thrown at us in these next few weeks but its becoming very hard emotionally as well as exausting physically.


We are lucky to have support from Sarahs mom, and my parents coming tomorrow and this weekend, if it were to be just us alone this whole time, we might have lost it. We have been able to manage with everyones thought and prayers and will pull our butts through this. Next time you see Sarah, give her a big hug and tell her how good and strong of a mom she is to be able to get through this. She is grinding along and I love her so much for it. I couldn't have a better wife to go through all this with. By the time all of this is over its gonna make us stronger, better parents and couples I know you are gonna say what about you.........well, I'm trucking along, thanks.

Update from the momma


My first update here, Ruby is resting peacefully. She has had moments where she has a little pain but the nurses have been great about managing her pain. It has been more stress and heartache than I ever thought possible but we know we are in good hands and that within a few weeks our Ruby will be seizure free. Please keep us in your prayers, we have not yet gotten to the most difficult part of... this journey. Also please say a prayer for our little Oliver. He is having a hard time figting a virus, a cough, and a fever. He had to go to the doctor yesterday too b/c he was so dehydrated. How much can one momma take? I never thought I'd have to worry about both babies. Hopefully I will have more updates but keep checking the blog because Jason is doing a good job of keeping it updated as things progress. Love to all....

Day 2

So we were advised by the doctors last night that if there was ANY night to go home and get rest, it was last night. So we came back to the apartment to a really sick Oliver. He has a fever and cold and almost had to be admited cause of it. We kinda thought it was weird he wasn't intrested in drinking anyhing, but it really compuonded over night. This morning Ollie woke up, looking at the bedroom door saying "rooo, rooo, rooo?". I think he was looking for Ruby which was so sweet and heartbreaking.
I had a hard time sleeping cause I was worried about Ruby all night. The ICU is such a sad place and it was so hard to leave her there for the night. I could only imagine her waking up to all the poor kids crying and moaning, being so scared. We were reasured she'd be ok though. From today on, someone will be with her at all times. I believe I will get night shift and Sarah will get day shift. We are in a whirlwind right now and these posts might be short and sweet, or scatterbrained, but we will organize our thoughts soon enough. We will try to get more pictures up soon enough.

Monday, February 27, 2012

All is well...

So everything went well today. Ruby did great, and is sleeping off the drugs. She looks so funny already with no hair but I know is already very beautiful bald. It was a long emotional day for all involved, and were relieved for it to be done. The staff here is amazing and had the best surgery team ever. Kind warm hearts in everyone of them. As long as today was, I think the week will fly by and be ready for the big day Friday. Keep thinking and praying for Ruby, for they worked wonders today. Be ready to wear your ruby shirts Friday for the big day too.
she sound asleep now and doing fine.

Update,

She's out of surgery!!! The first stage is done, we will see her in a bit. A small sigh of relief. Got to see a pic of her brain before and after the grids....super crazy!!!! Now, a week wait and then the big day.

Getting started.

They ran into a little issue with Rubys iv, a little dehydrated so harder to set, but got things going finally. The nurse said she looks beautiful even with a shaved head. Too hard to imagine right now. She has a breathing tube In so she might have to stay sedated till tomorrow. We will get to see her in about 6 hours, give or take. Long day for the family forsure.

Well, she's off

Ruby was a little fussy coming in, but she got some oral drugs and it was party time. She was a ham after that. Still awful to hand over our little angel, but its for good reason. Here is a little smile before she was taken back.


Sunday, February 26, 2012

Time is finally here

I was thinking I would have some eloquent words to write about how scary all this is and how I am feeling sick to my stomach but really I don't know what to say.  We are just putting one foot in front of the next.  My anxiety level is pretty high and I think if I were alone I would be an absolute mess but having others here have kept me distracted.  I hope that I can keep my mind occupied enough so that I don't have too much time to freak myself out.  A week from now we will be on the other side of all of this and will be working on rehabiliating our little lady and preparing to come home.

I have heard from other families who write about how long their kids have been seizure free and I just cant imagine that.  There will be a day when our lady has no more seizures..... It seems impossible and I just can't wait for the time when I can start reporting how long it has been since she has had one. 

I know that one thing that scares me is how she is going to handle the week of being stuck in bed not feeling well.  I have tried to stock up on things to keep her occupied but I just worry she is going to be hurting and upset.  Tomorrow night we have to leave her in the hospital and come back to the apartment without her while she is in recovery.  I know that she is in good hands but I am just sad that she may wake up and be scared not seeing mom or dad.  She has woken up every night we have been here upset because of being somewhere new, but I am hoping she will be sedated enough to not be scared.

We will be wearing our Ruby June shirt tomorrow.  Tomorrow would be a good day to wear your shirt, sport your patch, jingle your key chain, etc.  Say a prayer for all of us whenever you see them and pray for a speedy day for us.  We have been waiting so long.  It is now time to face the music and get through it. 

I am starting to babble so I am going to bed.  Hopefully I can get some sleep.  Early morning start tomorrow followed by a long day so I am going to take a meletonin and hit the hay.

Chilling...

The morning before the big day, watching her favorite show. It's gonna be a while before she has hair like this again. She will always be beautiful though.


Thursday, February 23, 2012

Pre-op

Well, Today was kinda painless. We met with the doctor and nurses today to do a final eval on Ruby, to be sure she is ready for the big day. Things always seem to make us feel a little bit better everytime we come down and talk. The staff here is amazing and we really don't feel like we could put our little princess in any better hands than the ones here. Its still super crazy nerveracking for whats gonna be happening, but its gonna be all good. So both the kids were little angels with the doctors, and got the check in time for monday morning. Its gonna be pretty early so she will be out realitivly early monday mid dayish. The rough recovery time they keep giving us seems nuts, only a few days to go home, but we might stay local even a few more days just to be sure Ruby doesn't spike a fever or something crazy. As the day gets closer, it gets scarier, but we know this is a good thing and I feel with what the doctors have been saying, will be the a smal bump in the road. I know its probably a sad thing to think about, but I am kinda excited to get this done and see her in her helmet. I can't wait to plaster that thing with the coolest Dora stickers ever!!! We will try to keep this updated for anyone following as best we can during this endeveor to try and give everyone a piece of mind. Thanks everyone for following along and keep Ruby in your thoughts and prayers.

Monday, February 20, 2012

Thank you so much!

I wish I could thank you all individually, send you some beautifully worded note, and give you a hug.  Jason and I are busy getting packed and ready to leave.  So please know that although we are unable to send out thank yous or do anything to really show our gratitude, we do appreciate all the gifts, the prayers, and hard work that has been done the last few months to get us prepared for what is upon us.

Now is the time to really thank God for the surgeons who will be working on our little girl and bless their hands as they heal her.  (I could use a few prayers to keep me calm too, if you could please)

You may not hear from me for a while, or I may be writing a lot.  I am not sure what to expect but Jason and I will try to keep you all updated as to how we are all doing.

Thank you so much,
Sarah

Sunday, February 19, 2012

Benefit 4 Ruby

So everything went off perfectly. The Deathtraps really did an outstanding job on getting things together and getting great donations from the community. It was very overwhelming to see the amount of people that came through to show their support for us and mostly Ruby. I really wish we could have gotten a picture with EVERY person that came by, just to show her how much she is loved by the family, friends and a great community. We will post more pics as they come in.
Being on the receving side of this event, I really can't find a single word, or many for that matter that can describe how much we appreciate the support. I had been told about the donation but when we got to see everything layed out, it was mind boggling. I can't thank all the businesses and people that donated . There were even 2 little guys that broke into their piggy banks and donated zpilock bags of change, which brought a tear to my eye....I was able to hold it together pretty well though in front of them.
The whole night was a blur of love and emotion, tears of joy and prayers that tug at your heart, and went by in a flash. None of this would have happened if it weren't for a group of greasy bikers with big hearts that want to help out friends. They are an amazing group of guys with great souls and am glad to have them all as friends.
Again, I can't stress it enough how much we appreciate the support, for everyone that came out, everyone that wanted to come but couldn't and thoughts and prayer from everyone, It goes a long long way.
We are also not going to be selling shirts or taking donations anymore since the turn out for the benefit was such a success, AND we are going to be gone and will not have any time to attend to anything but Ruby. We will keep everyone informed on things as they come, and they are gonna be here sooner than later, just keep checking back. Thanks again EVERYONE!!!

Thursday, February 16, 2012

Its almost here.....


http://www.deathtrapsmc.blogspot.com/

Here is a link to the Deathtraps page, and these guys are REALLY making things happen!!! Its nice to live in a small town and have some really good friends willing to step up to help out. Words can't express how greatful we are for this to be happening to help our little angel. This should be a kick in the pants!!! Music, raffle, silent auction, friends, good food and good times!!!! Be there, even if its to just come by and say hi!!

Friday, February 3, 2012

Recent events

There has not been much going on in our household for a couple weeks.  We all just got over a nasty round of the stomach flu so it has put almost everything on hold for about the last week or so.  I am starting to feel a little better. 
We have had a few people let us know about the "Wings Fund" lately and I just wanted to say thank you.  We have been accepted so they will be assisting us with our lodging, food, and gas.
Also, the fundraiser dinner is coming up on the 18th.  I am not sure if I will get to be there much but I hope to see many of you there.  I will be staying home with the kids.  Since it is so close to the surgery it is best to keep her away from large groups of people so she doesn't catch any sort of illness.  Luckily we all got thruough the stomach bug now and not in a couple weeks.  That would have been dreadful.
So that is my story in a nutshell.  I am sure I will have more to report when I am feeling a bit better.  Only 24 days until the first of two surgeries.  I just can not wait for it all to be over.

Wednesday, January 18, 2012

Perfect Strangers

While reading another mother's blog today I came to realize how becoming a parent instantly connected me to a world I never understood and never could without the help of my beautiful children.  My heart aches for people I have never met and I feel some unexplainable connection to them, simply because I too am a mother and now I get it.
Today I got a message from a father all the way in Australia saying how he can't imagine what we are going through.  To tell you the truth, I don't even think I am processing it. I am trying to stay busy so I don't have to think about it.  I am trying to spend every second that I can with my babies and smother them with kisses.  I find myself running my fingers through Ruby's hair, imagining what she will look like when her silky blond hair is gone.  I try not to think about that because it only upsets me, but it is impossible to completely block it out.  The thoughts are like Chinese water torture, slowly tapping away on my face.... tap.... tap....tap until I totally lose my mind.  Well, I am trying not to lose my mind by focusing on things like the playground project and my job, but sometimes it creeps in and takes over.
I wish there were a way to just fast forward the next two months and be done with all of this.  It is exhausting.  On top of that, I have to try to go on with my life like normal.  It is tough sometimes.  Occasionally I just want to curl up in a ball and hide somewhere, but that is not possible.  I have two babies to take care of and lately Oliver has been really sick and has been keeping me up all night and cries unless I am holding him.  Needless to say, that is also exhausting.  Hopefully he will be better soon and I can get back to snuggling with both kids equally.  Right now little Rubes has just had to be a good sport while I take care of Ollie.  And she really is a good sport.  She throws her typical tantrums here and there, but in general, she is a great big sister and such a cutie.  She gives really good hugs and says please and thank you all the time.  I am a lucky mommy.
The whole point to this was to say that I get it now.  Us parents are in a club that I didn't even know existed until now.  And us parents of kids with special needs are in a whole different club that may even speak another language...I'm not sure.  It is something I would never in a million years have thought I would have to deal with but I can tell you one thing for sure.  I have never been more compassionate.  I have never loved so many complete strangers or felt the love of complete strangers.  I never knew that someone I've never met could feel like a close friend.  I just didn't get it.  Now I do.

Friday, January 13, 2012

A place to call home... at least for a little while

So, I was finally able to get our lodging situation figured out.  Thanks to my step-dad Clint's neice Theresa, we were able to get hooked up with a great little apartment only a few blocks from the hospital.  I am very excited to have a comfortable place to rest during this whole adventure.  It also gives me a little bit of peace that we will all have somewhere to stay and many of us can stay there together.

So, our lodging is covered.... We have applied for a grant with the Wings Foundation to help with some of the costs of renting the apartment and hope to hear back from them soon.  We looked into the Ronald McDonald House but it just wasn't going to work for us.  I know that if I didn't have Oliver it would be fine, but I have to think about him and try to make the stay good for him as well.  If he were older it probably would be super fun for him to be there, but he is still a little young.

I am looking forward to the benefit that Jason's friends are putting on.  I really don't have very much information about it but I am sure we will know more as it gets closer.


Well, that's it for today.  I will leave you with this...

Wednesday, January 11, 2012

A good thing from good guys....

So I was approached by some friends of mine about this, and as always, was very humbled by the support. I may be just a little bit ahead of them by putting this flyer up, but I was too excited to wait. We cannot express the ammount of gratitude we feel that the Deathtraps MC wanted to do this. This will be a great gathering and it sound like there will be some good motorcycle things as well as skateboard things up for auction...Ride your bikes, drive your cars, we hope to see ya there, even if you just want to stop by and say hi!!!

Sunday, January 8, 2012

An idea that has been pulling at me.... What do you think?


The last couple months I have been thinking about how I could help improve the lives of children in our community that have special needs, especially mobility issues.  After having Ruby I have become profoundly aware that there is NOWHERE for children to play who are even just mildly physically challenged. 
Playing on the swing is Ruby's
most favorite thing....

Many times my friends and family have invited me to come to the local park with them and I usually decline.  Only until just recently we discovered a little play structure next to the Tuolumne branch library.  But that is really small and even that park is difficult to get up to from the car.  Having two small children makes it virtually impossible to go play outdoors because I would have to carry them both to where ever we went, and it was just much more work then I wanted to deal with.  Even now, at 2 1/2 Ruby has a tough time getting around on very uneven surfaces and if there is a play structure that you must climb up to really enjoy, she cant do it with only one arm.

Not being able to go outside and let her play with other kids at the park has always been a very emotional subject for me.    I am sure any of you who have kids with any special needs you will understand how I felt really alone.  All the "normal" things that other kids and parents were doing unintentionally excluded me and my little girl.  It is also hard to describe to friends and even sometimes to family, that going to the park is heart breaking.  It is yet another reminder that my child is "different" and can't do the things that kids are supposed to be able to do.  I always looked forward to taking my children to the park but now it is so difficult both physically and emotionally that I end up just staying home. 

I know that I am not alone in these feelings.  It is because of this that I have been looking into what it would take to get a playground built nearby (ideally Willow Springs Park) that is completely accessable to children of ALL physical abilities.  No child should have to miss out on the ability to enjoy the outdoors.

If you haven't already watched the video above, please do.  I have been looking for grants online and I think I will soon be going to a Willow Springs Association meeting to propose something, but I would love if I could get some support from others and maybe even some suggestions if you have ever done anything like this.  I know there are local resources such as the Sonora Area Foundation, that may be interested in helping but I have never dreamed I would consider taking on a venture like this and have no idea where to begin.

Wish me luck.....

Wednesday, January 4, 2012

The date is set... Finally

So, we finally know when it is all going down.  Pre-op February 23rd, first surgery (inserting the EEG pads on her brain) will be February 27th, and the main surgery will be Friday March 2nd.  I am not sure how long we will have to be down there.  It all depends on her recovery and the extensiveness of her rehab.  If she has a major set back, we will be down there longer so they can provide her with more therapy. 

I am still working hard to find a place for us to stay while we are there.  I have found a few promising leads and now that I have a date it is much easier to inquire about lodging.  I want to make sure we are all as comfortable as possible, especially Oliver.  There is no way I could pin him up in a tiny hotel room for three weeks.... That would be a nightmare for all of us. 

Keep little Ruby June in your prayers.  Thank you all so much.

Tuesday, January 3, 2012

Our blessings

I want to share with you some positive things that have happened the last few months. I feel like I have spent a lot of time sulking so I want to share some of the amazing things that have happened to our family. First I am happy to announce that Oliver took his first steps on New Years day. He just started walking like it was no big deal. He took four steps a few different times but since then has refused to do it again. Little stinker!
I want to thank you all so much for all the prayers for our family and want you to know they really have been creating miracles for Ruby and our whole family. Ruby still has not had any of the "drop seizures" since right around thanksgiving. Thank you God. It has been such a huge weight off my heart. Then our home loan company sent us a letter stating they have adjusted our home loan and it is going to lower our payment substantially every month. Then I got my job back, which I am loving. Then that crazy windstorm came through and damaged our roof so badly that our insurance company just bought us a new roof. It was going to need to be replaced this winter anyway. That wind saved our family like five thousand dollars.
So, although we have had lots of stress and anxiety in our lives lately, it has been peppered with some truly wonderful things as well. Please continue the prayers and thank you all for your love and support.
If you are interested I believe Jason has more of the black " Ruby June" shirts available. They are super cute I will post a picture when I get a moment.
Happy New Year!