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.