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 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.
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.
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.
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.
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......
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!
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!!
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.
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.
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.
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.
