2010 What a year?!!

Hello all

As I begin to write this update I can barely believe that 2010 is almost over and ALL we have been through this year. As I was first diagnosed with a cavernous angioma in my brain in September 2009, we knew last New Year's Eve that 2010 was going to be a big year of making important decisions regarding my health. While last December 31st was just the beginning of us finding our way, I am still in awe of how far we came in just one year! I would have never believed that I would decide to have major brain surgery (considering I am an incredible wimp and "elective" brain surgery originally sounded petrifying to me, but the alternative became even more daunting as time went on), end up with a stroke, and make a nearly 75% recovery from the stroke in three weeks, and all of this in a year’s time! Crazy!!! One thing that has not changed or perhaps is more clear than ever is my commitment to be thankful for all that each day has to offer and my thankfulness for being married to such an amazing man (John you are the best!!! I couldn't imagine traveling this journey without you!!!) and my immense gratitude to share in raising our precious little boy!

As we toasted at New Year’s Eve last December 31st, I would have never anticipated the amount of challenges that we would face in 2010 and I am hopeful our most difficult days are in the past! 2011 will be all about completing my recovery and getting back on track with a more precise focus than ever before. While in rehab I thought many times that I didn't need this type of character building but I got it non-the-less! I guess you can never have too much character...right?????? What a humbling experience to wake-up at 36 years old and not know how to tie your shoes!! Glad to have re-mastered that now!

As we reflect on all 2010 brought us, gratitude continues to be the theme. There could never be enough time nor words to thank everyone that has helped us along the way, especially this past year and on this blog. We appreciate everyone’s kindness and helpfulness in all ways...more than we could ever express!! I may have made a miraculous recovery but that was only possible because of all the love and encouragement that was received on my end. THANK YOU THANK YOU!!!

While our midnight toast may look a little different this year (water only for me), it will be extra sweet since we are no longer burdened by wondering when my brain might decide to bleed! YEAH!!!! Another year to come... to live!!! CHEERS, HAPPY NEW YEAR! We wish you all health, happiness, and much love in the year to come. Let this be your best year yet!!!!

I will continue to take it one day at a time... and I'm still getting better every day! J

Now more than ever we are truly "Thankful for Everyday"!

From John, Jack, and myself - love to you all,

Day 17 Sunday, December 26th

The past few days have continued to be pretty good days for Elizabeth. Christmas Eve was a pretty slow day with Elizabeth being pretty tired. I think this was from the day before being such a busy day.  She slept a lot and did some exercises. Jessica was here in the morning (Friday) for a few hours to help. I was then able to do some needed things around the house and yard. This whole thing has been quite an adjustment for Jack and he is doing pretty well. Elizabeth and Jack slept in the afternoon. Once they woke up, we then decided to check out some Christmas lights at some neighborhoods around us that are known for great light shows. We arrived at the street with many lights to Jack saying “ ights, ights”. We put him in the stroller and headed out for a walk. Elizabeth was doing well at this point except it was a bit chilly. It was around 50 which is cold for us at that time of night. We walked up and down the streets with Jack saying “Ohhh” and “Wow” the whole time while pointing at all the lights as I filmed some video. We saw many snowmen or “amen” as Jack likes to call them and whenever we see Santa he says “HO HO!”  We were able to do all this without her nudging me off the curb like she would do at the rehab center as she would drift to the left. That has gotten better. We walked about 500 feet and she started getting tired. This has pretty much been the standard through this whole thing. She is able to go in short burst and then needs rest. It was really nice to get out and check out the lights! It was a fun time for all of us. Again, after all we have been through, I am so grateful to be able to do an outing like this two weeks after the complication that happened during major brain surgery! She has made really great progress in these last two weeks. We are hopeful that continues.

Christmas day was a really nice day all around. She was feeling better than the previous day which we feel was due to her resting and not having such an eventful day on Christmas Eve. Elizabeth’s dad Nick, Step Mom Marti, and Brother Christopher arrived at our home in the morning. It was a really nice reunion as they had not seen Elizabeth since shortly after the surgery in Phoenix. I could tell they were eager to see her! They were very happy to see how much better she was doing. We visited for a while over coffee and sweets and then with help from us, Jack opened some of his many presents. Some of the big hits were a Mr. Potato Head, a talking helicopter, a pedal car with cool flames painted on it, and a talking Elmo game... just to name a few… It was a really great time for all of us. Her left side was so weak after the surgery she could barely move her left arm, as well as speech and left side face were really troublesome… but on this day I looked across the room at Elizabeth smiling and talking so much better than 2 weeks ago - I thought to myself - man this progress so far is amazing… I’m so thankful! We then put ornaments on the tree from Elizabeth’s Dad and Marti, as well as Elizabeth’s Aunt Nicolette and Grandma Tirabassi.  The tree is coming along nicely! She really loves looking at all these special well wishing ornaments that have arrived so far. Elizabeth’s mom Michelle and Mimi Ruth arrived later as well. Elizabeth barely made it through this second round of visitors. Michelle brought some amazing food that we all ate and Elizabeth and Jack then went down for a nap. I had slept this afternoon as I too am starting to catch up on sleep. We awoke as Nick and Marti arrived back at our home after they visited at Elizabeth’s sister’s house and with our help Jack opened the rest of his presents. We also ate a tri tip meal that Elizabeth’s mom had prepared for us earlier.  The meal was awesome! Thanks Michelle! She also got to finally have some, now world famous, Rite Aid/Thrifty’s Chocolate Malted Crunch ice cream! In a word, her quote was -  “delicious!”

All in all it was a very eventful, joyful day. It was a Christmas that will definitely be remembered!  Thankfully Elizabeth is able to be up and about for a few hours at a time and enjoy some of the festivities of Christmas. It is one of Elizabeth’s favorite times of year and I was so happy to see her doing better and enjoying it in our own home!

Thanks again for all your nice comments, texts, emails, cards, and calls… They mean the world to us and have given us immense strength during this challenging time!

Elizabeth continues to inspire me every day! I love her so much!

I hope you all had a very Merry Christmas!

We will update soon,

Thanks so much…

John

Day 14 Thursday, December 23rd

HI everyone! This is John writing…

Today was another day of heading in the right direction! Elizabeth continues each day to show signs of improvement.  We got up when Jack got up which was about 9:00. He still likes to drink milk in the morning out of a bottle when he gets up. This is what Elizabeth calls her special cuddle time! He lies on his back and drinks the bottle and she cuddles up next to him and rubs his arm, leg and face. It’s sort of like true bliss when you see them there both enjoying the moment. She really missed that special cuddle time. It’s so great to see that again!

Elizabeth’s Mom Michelle came over to watch Jack while Elizabeth and I went to her first neurologist appt. post surgery. The Doctor was impressed with how well Elizabeth was doing and reviewed the MRI images as we all talked about the details of all that happen the two weeks we were in Phoenix. The Neurologist gave Elizabeth a lot of credit for being brave to have the surgery and she also said “that thing was on the move… you did the right thing”… She also said" do realized you just saved your life??... you're a miracle!" The doctor then talked about how Elizabeth looked a lot better than the MRI. The latest pre-op MRI showed a recent bleed as well. We looked at all the post-op film and it’s just an amazing sight to see the hole left behind in her brain. The brain should naturally in time fall back into place where the malformation was. I guess now if someone asks if she has a hole in her head, she can say, “Yes, I actually do!” When we met with the Angioma Alliance folks at the hospital, they joked about an alliance T-shirt that some people get that reads “I had brain surgery, what's your excuse?”. The Neurologist gave a very thorough exam and continued to be impressed considering where Elizabeth was 9 days ago. The Neurologist wrote a prescription for intense outpatient rehab which will be in Northridge 3 days a week as this was the best recommendation that wasn’t too terribly far from our home. She also wrote a referral to a Neuro ophthalmologist. We’ll see if he’ll take the referral… It’s crazy to me how few Neuro Ophthalmologist there are in the world. There is something like two in Phoenix and two here. Hopefully we can get there soon and they can offer some insight into why her eyes are making her kind of dizzy and feel a little sick. She was able to post yesterday as you saw, but it’s hard to look at the screen for too long. It also makes her tired… but she was able to put that post together before she had to sleep. She will be writing more in the future as her eyes and tiredness permits typing and looking at a screen.  

We stopped and got lunch on the way home and she ate well. Her appetite is back and she ate her entire lunch. She is fairly underweight but that will come back soon. We got home and she was pretty tired. She went to sleep and I relieved Michelle from her baby sitting duties. Michelle made a fresh soup for Elizabeth that was out of this world! It’s a little bit like soup and a little bit like stew so her Mom calls it stoup. I never had stoup before today but I can tell you it’s delicious. Elizabeth said “she can keep all this yummy food come’n”. I then did stuff around the house as we are still getting situated and unpacked from the trip. I purchased a small tree (4 ft.) and set it up today. I put it on top of a buffet that sits in the family room. This way Jack can’t get to it either. We put a few ornaments on it that have already been giving to Elizabeth. It really made that little tree start to come alive. I had made a suggestion in a post a few days ago if people wanted to send a well wish to send/give an ornament to her. It will be nice to keep adding to the tree for the next few weeks and we’ll probably leave it up until a few days after the first. It was fun to get the little tree started. It will definitely be a Christmas to remember.She can enjoy the ornaments forever and remember all this healing power.

Tonight was pretty mellow as she played with Jack for quite a while. She also keeps reading him a lot of books because it helps with her speech. Jack really likes the extra book readings. Hopefully tomorrow we’ll get to get outside more because the weather is becoming nicer finally as it’s been raining off and on for 5 days. She is craving the sun… tomorrow it should be out!

Tomorrow night (Christmas Eve) we were going to try to go to see some Christmas lights in a neighborhood near our home where every single house is decked out with lights. Jack really likes Christmas lights and so do we so that will be a lot of fun.  It will be quite a sight after all we’ve been through in the last two weeks and the last year and a half for that matter…. to see my beautiful wife walking down the sidewalk with my beautiful little boy admiring all the beautiful lights!  How great a place in life to be… as so grateful for such little things as these!

Elizabeth’s progress continues to be better and better! We thank all who have given their warm wishes, love and support. This energy is a very powerful thing.

Thank You!

We want to wish you all a very merry Christmas! Remember to cherish the people you love every second of everyday!!!

  

We will post again on Christmas….

Thanks,

John                                                                                                                                                      

Day 13 No news is good news!

Hello to all!!! This is Elizabeth writing!!!

OK, I'm back not quite 100%...but I'm feeling pretty good considering the circumstances. So we got in about 8:00pm last night and our trip was rather uneventful...thankfully! Today I mostly rested all day, I took a shower and practiced some of my exercises which felt good. I want to make sure I keep moving exponentially in the right direction. There is at least one thing stronger than this so called "brain damage from the stroke"...and that's my will to get back to being "me"!!! So it's time for practice, practice, practice! I have a doctor's appointment tomorrow with my neurologist so I'm hopeful she can point me in the direction of a great outpatient rehab that's local. I tried to get an appointment with the neuro-ophthalmologist but he said I need a referral. I told the office girl...I have a PPO… just had brain surgery and am having tremendous problems with my eyes, I'm referring myself. She didn't buy it...so I made an appointment with the regular ophthalmologist for next week.... so I guess it's gonna be awhile before I get my eyes all fixed up. I was hoping that getting people to take me seriously was not going to be a problem after surgery...I don't think they just cut your head open for fun....duh..there’s something wrong!!! My eyes are worse than ever and I would like to get them fixed ASAP. They currently are a huge source of discomfort...AKA dizziness. I guess it's going to be a few weeks before I can work on fixing my eyes :(

 Again I would like to thank everyone that has helped along our journey and everyone that has offered kind words of love and encouragement. I'm sure the positive energy helped me to meet milestones that were equivalent at times to miracles. Thanks so much to each and every one of you! Thank you, thank you, thank you!!!!! 


I will write more soon...


Elizabeth

Day 12 Tuesday, December 21st

All I can say is, man.. what a day! There was so much going on today I don’t even know where to start? So I guess I’ll start the best spot… the beginning. The day started out with me waking up to putting all the bags in our SUV while Jack was still asleep and that continued after he woke up. My sister Rebecca was able to take a few hours away from work to help me get out of her house and help me get Elizabeth out of the neuro rehab center with Jack in tow.  My brother in law Tom left for work and I hugged him and told him how much all his help meant to Elizabeth and me. I told him how lucky we are to have him in our family! It was an emotional moment.  I finally got all our stuff in the car as it barely fit coming here and we went back with a few extras for Jack from Rebecca and Tom. (Hand me down toys) and Christmas presents as well. Jack and I proceeded to the hospital as Rebecca fallowed.  

Elizabeth was excited to see us and her Big Boy and was organized and ready to go.  We started to work our way though the facility to the exit and say our goodbyes and Jack was waving and saying “Hi, Hi” to everyone. It was definitely an emotional departure from the facility to say the least. This is a place that has put Elizabeth on the right path to recovery. We are truly grateful for each and every one of the staff members at Barrows Neuro Rehabilitation Center! We continued to exit the center as people gave Elizabeth pats on the back and said “look at you, you’re doing great” and “good luck” as I filmed this big moment of her leaving the facility. It was awesome to see her walk out of that place so much better then when she was wheeled in! It was a great  site to see! She continues to look and sound better each day!

We got to our vehicle and loaded Elizabeth’s bags. We then said our goodbyes to Rebecca which was hard and good as she has grown pretty attached to our little guy and we are so extremely grateful for her. My sister Rebecca and my brother in law Tom have been a gigantic part of us getting thru and getting to this point!!! We all hugged and cried good tears. Thanks Rebecca and Tom... you guys are the best!

We had one more thing to do before we left and that was to get some prescriptions filled. We had to wait a bit and got some lunch before we picked up the prescription and started to head back to Valencia, California. 

The trip started out good as we avoided rain during all the loading. Once we got going, Elizabeth felt good with the movement of driving and did not feel motion sickness. Jack passed out in about 15 minutes and the grey rainy weather is good for his sleeping. They both slept for the first two hours. They both continued to have a good go of it although I was driving in the rain. It wasn’t too bad until we got about two hours from home and we hit heavy rain as darkness fell. We also hit some traffic… but Elizabeth and Jack both did well. The traffic made us get home later than we were hoping for but we all were so happy to be getting home including Jack as for the last five minutes of the drive he kept saying “out, out , out!” It was a great feeling driving into our dry garage! Home at last!!!

Elizabeth’s Mom Michelle was there to greet us not with just her face but with food cooking in the oven and groceries in the fridge! Her sister and brother came over to help Michelle get situated with goodies for us. Elizabeth’s brother Christopher, who is a very talented artist, drew a big “welcome home sweet home” sign! The sign was a really cool thing to see right when we walked in!!! It was really nice to come home to. It was a really nice feeling to be in our own home!!  We sat down and had an amazing meal prepared my Michelle who is a phenomenal cook. It was really nice for Elizabeth and I…. and Jack too! Michelle helped Jack take a bath as I started to get Elizabeth a few things so Elizabeth could get ready to go to bed as she was really tired as could be imaged. Elizabeth read Jack some book’s on our bed and she then went to sleep saying: “this is gonna be so nice” When she was looking at the bed, she had this look like a starving person staring at a steak. This will be some good sleep for her! I then put Jack down and unpacked the rest our vehicle.

I will be extending my time off from work as an electrical contractor through the first of the year.  I want to be sure we are completely settled with all the details of our new routine with outpatient rehab. We will be keeping it mellow thru Christmas as we have not had time to do anything for that. We don’t want to deal with a big tree and all that. Our storage keeps getting more packed instead of more empty as I would like and as some of you know, Elizabeth is a real holiday decorator. Heck, we have like 15 large tubs of stuff... and it does look really nice when she does it up. Unfortunately they are buried in the back to the storage and there is no time for all that.  We thought we would get a small tree and keep it low key this year…. put a few lights on it and buy a cheap ornament set because we can’t get to our holiday stuff without an all day effort to get to the back to the storage. But I then thought it would be cool if people wanted to show support instead of flowers etc., … they would get her an ornament and we would decorate the tree just with these ornaments. They can come after Christmas too as we will have the tree up for a while… and we could use in other years as well. Any show of support in any way is fine by me of course but, if anyone wanted to do that I think it would be fun.

This has been a journey for the last year and a half and today was another significant part of it for us… getting home! To come back to the same Train album I mentioned before, ...with her hand in the air Elizabeth would always sing out this one line of a song on that album… here is that part of the lyrics with that line highlighted in bold from the song  “If It’s Love”

Hold our cell phones up in the air

And just be glad we made it here alive!

On a spinning ball in the middle of space

I love you from your toes to your face

We played that song coming home and she sang that line with her hand in her air! It was great!!!

She is happy to be alive and happy to not have “a bleeding ping pong ball” in her head as she so un-affectionately called it. It was a really uplifting day today! We are so glad to be home and are also ready for Elizabeth to keep getting better here! Nothing like the sleep you get in your own bed!

Thanks again for all your supportive comments. You all are so very much appreciated!!!

It’s great to be home! She has requested donuts for tomorrow morning.. Donuts it is!!!

Thanks,

John

Day 11 Monday, December 20th

Today started out with Elizabeth being up and ready early as usual for the 9 am start time for the first therapy session today. It was an outing to the grocery store. This is to see how patients are doing with these type of day to day activities. She was givien a list of items to purchase. These items would be for another group therapy that would involve working in a kitchen. She did well with this. She was able to navigate her way around the store pretty well and carry a hand cart with about 10 pounds in it. She was able to get in and out of the van pretty easily with me shadowing her.

We then went to speech therapy where she did some complex exercises to challenge her more. Some were following directions through mazes and others were memory exercises. They also worked on speech inflection. Her speech has become much better throughout these 6 days at the rehab center.

The next therapy session was working in a kitchen they have at the facility. It rivals a home kitchen environment. Her job was to make pizza. She said “I love pizza, this is a good activity for me!” On Friday when she learned of this activity her jaw was still hurting so bad that she  said “maybe they can put my pizza in a blender”… She was able to eat the pizza today without the blender.  Others in the group were making salad and preparing fruit. She did pretty well with this exercise. They had her doing multi tasking with clean up as they went. The pizza was really really good.  She talked about how we never made that at home and that we should because its easy, fresh and taste good. After all the cooking was done, we all sat down to eat. It was a fun activity for all.

She then had a final therapy session of the day with the Nuro psychologist. They were really impressed with the change they had seen in Elizabeth since their last meeting on Thursday. That was nice to hear from them…. Elizabeth told them how happy she is to have that thing out of her head and in the past. A life without fear of a ticking time bomb in her head. Now it’s time to continue to get better. Elizabeth told them she was happy with her progress and gave much credit to the rehab center team.

We then went back to the room and she wanted to rest. After she woke up, we talk for awhile about all our plans for getting home. As most of you remember, Elizabeth is being discharged tomorrow! She has elected to ride in our SUV back to California with me and Jack. She has been cleared to either fly or drive. It is about the same time when you put in all the time that it takes to fly before you’re even in the air. She then ate dinner which was good to see. She took a shower with me helping very little. I then got the room packed and ready for tomorrows exit. It was kind of surreal putting away flowers, taking down the pictures Jack had drawn, and pictures of us as a family from the walls. Although this whole thing has felt surreal... I often kept thinking I was dreaming. This was the end of a rollercoaster of emotions we experienced here in Phoenix…. leaving now with momentum that things are working in the right direction.

I then proceeded to my sisters to help with Jack and pack and get ready to leave. Tomorrow will be interesting to say the least with our trip back. I’ll be heading back with a packed SUV, Elizabeth who is recovering still, and Jack. Luckily he’s a pretty good traveler. I hope that is the case tomorrow. I think I heard it’s been raining in our hometown area. Hopefully we don’t get too wet. In reality after what we’ve been through, that all seems easy…

Today is a great day because it’s the last real working day for Elizabeth at the rehab center. We had many hugs with staff here today and will miss them, but it will be great for us to be in our own home!!! The staff here has been incredible! They really take so much care and professionalism in what they do. We couldn’t have made these initial strides without them! They have grown fond of Elizabeth and will miss her too!!!

It will be an emotional departure tomorrow to say the least…. but we are now committed to Elizabeth getting better and we are looking forward to our new life without a cavernous angioma!!!


Elizabeth and I have always had a great perspective on the appreciation of life and how important that is and now that’s just a little bit sweeter…just like our love…. It just keeps getting better!!! My love for her and Jack is simply immeasurable!!! Elizabeth is truly like that oak tree I keep referring to!!! I will leave it now for you to read. It is a remarkable poem that is an example of Elizabeth’s incredible strength to endure!

“The Oak Tree”

A mighty wind blew night and day.

It stole the oak tree’s leaves away,

Then snapped its boughs and pulled its bark

Until the oak was tired and stark,

But the oak tree held its ground

While other trees fell all around.

The weary wind gave up and spoke,

“How can you still be standing Oak?”

The oak tree said, “I know that you

Can break each branch of mine in two,

Carry every leaf away,

Shake my limbs and make me sway,

But I have roots stretched in the earth,

Growing stronger since my birth.

You’ll never touch them, for you see,

They are the deepest part of me.

Until today, I wasn’t sure

Of just how much I could endure.

But now I’ve found, with thanks to you,

I’m stronger than I ever knew”.

Thanks everyone for all your continued support. We appreciate so much. It is very powerful!

Thank you, thank you, thank you,….

The next post I write will be from home sweet home!

Thanks again,

John

Day 10 Sunday, December 19th

Today, Sunday December 19^th, was our fifth day in the rehabilitation center. I arrived at around 10 am on this day as it was on off day for the center. I helped my sister Rebecca get Jack going and then got to the center at around 10ish. By the time I got there she had already gotten dressed, ate breakfast and had worked out in the gym with mild exercise she can do on her own. When I arrived I thought she looked spry. We decided to go for a walk in the long hallway that leads to the facility. It was a nice walk because I was really seeing the improvement she has made in 4 days at the rehab center. Each day I see a nice little jump… now they are starting to add up. On the way back we sat at a group of chairs in this hallway outside the rehab center to take a load off and read comments on the blog on our laptop computer. I told her “this is where I would sit and write on the blog sometimes” she said “this spot doesn’t look to inspiring” as it’s kind of a dark cave looking hallway. I said “you inspire me, what more would I need”. Elizabeth does inspire me… she shows me everyday how you can overcome adversity. She is determent to do her best always! And she is always doing it with humbleness and gratitude. We read a re-read a lot of comments on the bog sitting there this morning. We talked about the comments and cried some too… good tears though…. us realizing how much we’ve been through in a little over a week, and how far we’ve come but also realizing the challenge ahead of us. Love is a very powerful thing…. and ours runs so deep! It’s always empowering us… empowering us as a family. We love that little boy so much! Words just can’t describe it. Jack is only 22 months and won’t remember any of this but he is an intricate part of our strength as well. I think of it as a triangle constantly pushing love and energy around were it is needed. After long days at the hospital, I would come home after one of these heavy days and he would always put me in check. His hugs are more uplifting than ever. I think it’s crazy how a 2 year old can help keep his old man’s head screwed on straight! He has obviously inspired Elizabeth too as I have posted of in the past. It was a nice moment for the two of us sort of away from everything. I think the best part was when she got up to go the bathroom in the hallway. I watched her walk away from me and I thought to myself wow, she really is walking and moving better. It was really exciting for me to see that. On her way back from the bathroom she was walking toward me and I gave her the thumbs up as I told her “you’re really doing good!”

It was lunch time by this point and we when back to the room to see how it looked. Some meals are not too bad and some she just not into. This was one on the not into meals. I then ran down to the cafeteria and got her a lemon chicken thing and some potatoes that she liked…. and chocolate cake which is her favorite. She ate well. Her appetite is definitely back and the jaw is better so that helps with eating too! She then rested for awhile.

Becky from the agioma alliance had contacted Elizabeth to see if she was up to a visitor. Elizabeth said sure and she stopped by this afternoon. Becky, who lives in phoenix, had a cavernous angioma removed 4 years ago. She is an advocate for the alliance and is VERY appreciated. She has mentored many people through this process. She is doing good work! She has helped Elizabeth and me so much. We talked for awhile in Elizabeth’s room and then walked over to the Neuro recovery area where another friend from the angioma alliance was recovering. Her name is Mea and she has surgery this past Friday. She is doing well with no complications. It was nice as they all got to meet in person for the first time and chew the fat about cavernous angiomas. They were all really nice people and Elizabeth thought it was so nice to do that today.

We then walked back to the room and it was dinner time. It was turkey with all the fix’ns. It tasted good to her and she then wanted to rest. I left her so she could sleep and I went back to my sister to get jack ready for his visit to the hospital. Elizabeth was anxious to see him. Jack and I arrived back at the rehab center to Jack saying “Hi” and then “Bye” while waving at everyone as we walked into see Elizabeth. It made the staff laugh and Elizabeth smile. It was another great meeting for them and we did some books and then a walk and then to the gym (Jacks favorite place there). It will be so nice when Elizabeth can hold him again. She is really missing that. It was getting late for Jack and we proceed to have our 20 minute goodbye session. She just doesn’t want to let him leave as we say ‘just one more hug… one more kiss”. It was another really nice visit!

Again, another good day with strides in the right direction!

Thanks again for all your nice comments. We are reading and re-reading them always!

I will post tomorrow night.

Thanks,

John

Day 9 Saturday, December 18th

Today started out great with Elizabeth saying she slept good and the jaw was noticeably better! That made me feel really good right out of the gate today and I was also noticing that left side face muscles looked a bit better too! The brain seems to be re-routing re-learning as she has a bit better control. Needless to say it’s a really great sign!

She was ready early as usual and had eaten a small breakfast. Saturday and the rehab center was a slightly shorter day then usual by a couple hours…. still very vigorous and fast past though. This place really does not mess around. They have to deal with many different levels of recovery and they really do a good job with many different people working really hard with us. It’s really humbling being in a place like this. We’re thankful for all the therapists and techs here. They have really put us on the right track and it’s such a great starting point for us.

The first activity of the day was an outing to the Starbuck’s kiosk at the main entry to the hospital. It’s a pretty good trek. Probably about 600 feet totally distance round trip. There was about five patients  along in this group.  Some are in wheelchairs. Elizabeth asked one of the therapists if she could push her roommate who was in a wheelchair for this outing. Elizabeth said she needs to get strong to push Jack in his stroller. They let her and she did well with it. They would ask the group on the way back from Starbucks which way to turn etc. as they are working on memory with the patients. Elizabeth did well with this too and always knew her way back (which was even hard for me to remember). As they enjoyed there coffee’s they sat and talked about their challenges. Elizabeth was very enlightening with everyone and injected real positivity into the group. Again the therapists were inspired by Elizabeth as they talked about how rewarding their work is. That’s what it’s all about!

Next was Physical Therapy. Again, Elizabeth did pretty well and was really challenging herself. She practices sit down bike, side stepping, forward backward walking, and stairs. Another of these activities was talking a ¼ mile walk outside around the facility. It was an extra special outing for me as we started to walk with the therapist outside on the side walk and Elizabeth held my hand. It’s really is the little things as it made me feel so good!!! She did well with the walk although she can tend to drift to the left a bit at times…. all part of what we’re working on.

One hour of occupational therapy was next. She practiced lifting a baby doll that was about 12 pounds. She also did a hand/eye task that was putting little plastic pieces on little posts with her left hand. This was a little hard but she managed to do it. The funny thing I thought about it was how she put them in this little clean precise pattern. I thought this is just like her as she is such an organized person always. I always think how crazy it is that we can find a receipt from a convenience store from four years ago in 2 seconds. This OT continued with exercise machines. One machine that you peddle with your hands made her dizzy. It’s somehow looking at the moving objects that make her complain about her eyes. Something we will have to address when we get home with a neuro ophthalmologist.  

She then had lunch after a tiring morning and ate well! The jaw is feeling better and her apatite is back! She ate almost all of it. It was like a chicken pot pie with a fresh roll with butter. She said it tasted pretty good. She said “it’s just lucky I got my appetite back because I’m starting to disappear”… she was referring to her weight which is about 110 but this will come back. This is about 15 pounds off her normal weight. I joked about how she would come back looking 15 pounds lighter and I would come back looking 15 years older…. We both laughed. She also ate the whole dinner which was a salisbury steak with mash potatoes. It’s so great to see her eating. She even asked about stuff like taco bell and In-N-out Burger. Tomorrow (Sunday) is an off day at the rehab with no work being done with patients but we will be busy planning everything for the departure home/doctors appt/filling in planning calendars… mixed with practicing some exercises and maybe going in our own vehicle off site to In-N-Out Burger! And she will see Jack Sunday evening as well… Also she may try to post! So even on an off day we’re busy.

Elizabeth talked today about the Tirabassi family annual Christmas party that was tonight. This is family from her dad’s side and it is in Las Vegas. She talked about how much fun it always was and that we’ll be making up for lost time next year.

One fun thing that we did tonight was watch video I shot of Jack running and playing in a park that is right by Tom and Rebecca’s house where Jack and I are staying. She really liked that. She can’t wait to see him tomorrow (Sunday night). Rebecca and Tom did well today for their first day with Jack for the whole day. Jack has really warmed up to them! Thanks again Rebecca and Tom, you guys have been awesome!!!

Thanks to everyone for your continued well wishes on this blog. We are always reading them! They are truly inspiring to us!!!

Thanks so much…

John

Day 8 Friday December, 17

Another long day for everyone although I was with Jack today and Elizabeth’s mom Michelle was at the Hospital most of the day (Friday). My account won’t be as detailed as if I was there but I’ll do my best. Michelle will be leaving this day to go back to California. She will continue to be helpful once we get home.

Elizabeth’s day started out with throwing up unfortunately… The Percocet was wearing off by morning hours as they stop in the middle of the night so she’s not drowsy in the morning to do the rehab work. The jaw starts to hurt and she gets sick from the pain. She took nausea med and was better. She did get ready on her own and put makeup on which she has done over the last 4 days although today she says she was able to apply it better. The rehab work is the same as the previous day except some of the exercises change. Occupational therapy has a kitchen in the rehab facility. They went over techniques that will help in the kitchen and they had her make eggs. She did well with it! I wish I could have been there to eat them.

PT was about the same as yesterday except she got to go outside. She walked on the sidewalk near the rehab center. She told the PT person Jen that she felt like running! Jen said “maybe not just yet” and Elizabeth said “yeah maybe you’re right”. It reminded me of a great Train song we both like called Parachute… the lyrics are

I'll open up and be your parachute  
and I'll never let you down
so open up and be my human angel
and we'll only hit the ground
running!

She is my human angel! And she has definitely hit the ground running even if it’s only in theory!

Speech therapy went well with learning new facial exercises and working on using inflection as Elizabeth voice is quieter and a little mono tone. She is determined as yesterday I caught her doing leg lifts on the bed and practicing her face muscle exercises on her own time too!
Elizabeth had shown a nice improvement yesterday and that continued today!!! It was REALLY encouraging!! The staff meeting went well and they said she is doing great. They have giving her a go home date of Tuesday, December 21!  It will be so nice for her to get home in her own bed/space! We will continue all three therapies she’s been doing at an outpatient facility back home.  We have a lot of work to do but it will be an awesome day when we get home!

Elizabeth continued with her extodanary thoughtfulness tonight as the 36 year old woman I told you about that is her roommate is continuing to not feel well and has memory problems (this after a cancerous tumor was removed). Elizabeth went over to her and said “you need to use this rock from my grandma to harness the power of the universe”. It was a nice gesture from Elizabeth. The woman said “yeah I need a rock like that”. I told the woman’s sister, who was having a tough time with it, to “hang in there”. I know how she feels. We also saw a boy about the same age as Jack that is in the rehab center too. I heard his voice crying Dada, Dada… It sounded like Jack… It made us think wow that would be really though… I don’t know his story but I hope he recovers soon.

Another great part of the day was Elizabeth getting to see Jack again! I brought Jack in the evening. The craziest thing again was when unprovoked by me - we pulled up close to the hospital and he said again.."mama, mama, mama". Its so strang because he cant really see where we are from his vantage point. some how he knows... We again hurried to the center. This time Elizabeth was sitting in a chair at the edge of the door way waiting for us. It was nice to see her sitting in a chair. She saw us from down the hall way walking toward her and she started to wave…. Jack immediately started to wave back saying Hi Mama, Hi Mama! It was a nice meeting similar to the first from two nights ago although we went into the gym this time and Jack just loved that! Jack was also happy to show Mama his new picture her drew for her. We've been taping them on the wall in front of her bed everyday.

Elizabeth’s mom Michelle went back to California tonight (Friday night). My sister Rebecca and my brother in law Tom will pick up where Michelle left off with helping with Jack. After what Michelle and I have been through together, it was an emotional departure. Michelle and I have been through so much in these last eight days as we’ve worked so hard and so close together to get to this point. It’s something only her and I will understand… I hugged her really hard for a few minutes…. We cried and said how Elizabeth can do this… we can do this! After me, there is only one person Elizabeth trust more with her Big Boy and that’s Elizabeth’s mom Michelle! It really made Elizabeth (and me) more at ease going into and after the surgery knowing that Michelle would be the one to help with Jack. I can’t imagine how it was for Michelle to leave that hospital and go to the airport tonight, but Michelle too was inspired by Elizabeth’s progress today! I know she is taking that home with her. Again, Michelle will continue to help from home when we arrive.

All in all, a great day!

Continued thanks for all your support and encouragement! I update Elizabeth often with all your comments! We appreciate it so much!!! Hopefully she can post soon.

All our love back to all of you!

I’ll update soon, Thanks…

John

Day 7 Thurday, December 16

Thursdays rehab started at 9:00 am although they are getting everyone going with wakeup stuff at around 7:30. Elizabeth is awake earlier because the sleeping is still spotty but better. They put her back on Percocet at night starting Thursday night which is really good. The pain in her jaw has kept her awake for the past few nights because they put her on the less potent non drowsy med. They will just give her the powerful drowsy med at night. They will stop that in the middle of the night and switch to the non drowsy med.
These rehab days are very busy with work from 9-4 with a one hour break in the middle.  She charged through the day like a real trooper! It really made me feel good. She has such a great attitude!... still cracking little jokes along the way. It’s imported to try to laugh although you might not feel like it always. …. It uplifts the mood. She does good with that. I’m so thankful for her great attitude. Physical Therapy started at 9:00. She was dressed and ready to go when I arrived.  I was able to be there early this day and it was great for me to get to participate with this day’s activities. PT person’s name is Jen and she is really good! They have her on some light weights for leg exercised, stairs and a sit down bike. She did well. She told Jen how she used to the stairs in Santa Monica and how she loves the looking at the ocean and running those stairs. I told her we were gonna run those stairs again… she agreed! She will get to walk outside with pt but it was raining on this day. It will be nice for her to get outside!
It was then time for Occupational therapy. We talked a lot about how the house set up…stairs, shower etc…. and how her balance and peripheral vision which are both good. We practiced getting in and out of a make-shift shower set up to be like the one at our house. Again she did well and these types of daily living actives continued throughout the day.
Speech therapy went well too. She practiced facial exercises and some reading aloud with a comprehension testing. One of the stories had something about a dragon in it and she said “Ya know I used to have a dragon in my head”. It made us all laugh! She did well and even got and 9 out 10 on the comprehension. I teased her like I used to and said with a smile ”way to go over achiever”. She laughed.

Some Neuropsychologists came in to talk to her about the emotional stuff. “She said I don’t need you guys I’m happy!” Again we all laughed. This is just procedure and its good that they are there for her. She knows that and did the interview. She told them a great story about how her grandma Tirabassi's , who just turned 90, made her a gift of a specially painted rock with a cross on it and that it had given Elizabeth strength. She keeps telling everyone how "this rock is going to bring the power of the universe to help me"... and it has! It the simplest things that mean so much in life! Thanks Grandma Tirabassi! You are such a special lady! We love you so much. Again this meeting went well and they really liked Elizabeth! For those of you that don’t know Elizabeth has a bachelors degree in psychology as well as other degrees and credentials including being an RN. They were all talking in Chinese as I was sitting there acting like I understood. That psych degree is just one of the many notches on her belt. Ya know the typical over achiever.

The above repeated in the afternoon after lunch. She did well with lunch and ate a whole peanut butter and jelly sandwich. Needless to say she was very very tired after all of this. The jaw pain was creeping up on her and after dinner which she ate and then she ask for the pecocet. She took a shower on her own with me shadowing her. It’s done with some right hand favoritism but she trying to use the left hand. Little by little left side has gotten stronger. Still a ways to go but little by little she’s done great so far!
She took a percocet after the shower at about 6:30. She was obviously extremely tired even before the Percocet.  Heck I was tires just riding along. She started to dose off as said if we should probably bring Jack tomorrow night and she was already asleep so she'll try to see him Friday.

This was a really good day for her and I as tiring as it was for her. She had really shown the biggest jump that I have seen on a day to day basis.  It was very inspiring. (remember she had seen Jack the night before... it really gave her a boost). My sister Rebecca came to drop off some clothes on her lunch break and saw it too. She even made a comment about it on the day 6 post. Elizabeth’s strength is unbelievable during this time. Again, it makes me strong. We feed off each other's strength. I love her so much its simply immeasurable. I just can’t wait til we can go on our evening walks with Jack on the poseos near our home in Valencia like we always do. Tomorrow is a big day because the rehab center has a meeting of the minds for Elizabeth’s progress and potential go home date.  I know it will be good news!!! It will be so great to get her in her own space. She will be able to rest so much better at home.

Jack was at my sister Rebecca and my brother in law Tom's house (where we are staying since leaving the hotel) with Elizabeth's mom Michelle this day. He's done pretty good considering everything.  All three have continued to be a phenomenal help and support with everything! Michelle will head back Friday night and Tom and Rebecca will take over for some of what Michelle had been doing. Tom has taken days off next week to help! And Rebecca will try do work from home for 1/2 of a work day. Thanks SO much Rebecca and Tom! These three people have been an ENORMOUS help during this time!! I cant thank them enough if I did it a million times!!!

Elizabeth is so amazing as she had sent encouraging thoughts on her own to a friend named Mea from the angioma alliance who is having surgery here Friday. It’s just like her to always be thinking about others....even in her condition. She asked for all of us to thing good thoughts for Mea today. Good Luck Mae!!!

I will try to update earlier Friday night with the days events and the news from the rehab team.
Continued thanks for all the encouragement from everyone!!! It’s so huge right now for us both! I thank each and every one of you from the bottom of my heart! I always update her every day. She may be able to post soon.

Thanks so much!

 John

Day 6 Wednesday, December 15

Today was a much anticipated day. One because she is finally able to get started at the rehab center… and two because Elizabeth would get to see her “Big Boy” as we affectionately call Jack sometimes.

Sleeping was fair last night and physical therapy started first in the morning.  They had her doing some stair work and walking exercises.  Speech therapy came next. And then occupational therapy was the third thing that was done today.  These sessions will be two to three time a day for each one.  It keeps her pretty busy when you mix in trying to eat, resting, showering, visiting time, etc.

Fortunately and unfortunately they have taken her off percocet and put her on a less potent drug that will not make her so drowsy (the Percocet had been making her very sleepy). The good news is that it allows her not to be so drowsy… the bad news is it doesn’t stop the pain nearly as well.  They obviously don’t want her to be drowsy for the rehab work but she’s just in a lot of pain without the stronger pain med.  This jaw thing really sucks for her comfort level right now. I’ll be really glad when that is gone! Hopefully from what others that have had their jaw muscle cut say is that it takes a few weeks so hopefully we’re half way there.

Michelle was with Elizabeth a good part of the day today as I was at my sister’s house with the big boy. Then I came in the evening. Tomorrow we will flip that and will be there all day starting in the morning. It’s a balancing act with someone watching Jack and we’ve a good job of that. It’s hard for me to be away from her right now. I keep thinking if I could just split myself in two I’d be good… but all involved will do our best along this path to recovery. Elizabeth’s mom helped her take a shower and had brought her more smoothies which she drank about another 10 oz. of. She also ate a good portion of spaghetti tonight at around 6pm which is the most real food she has eaten since this thing started.  So the food situation is still slow but moving in the right direction. One of the nurses today asked Elizabeth if she wanted a carnation protein drink and Elizabeth said “I’m bias to Abbott products… bring me Ensure!” She told me that story tonight and we both laughed (Elizabeth worked for Abbott in the past). Her mom Michelle was with her during some of rehab today and said Elizabeth did pretty well. Elizabeth thought she did pretty well to for the first day. She has been complaining about her eyes making her dizzy and it’s been a problem for her. She will see a neuro eye specialist tomorrow. They are also making her try to do all things for herself as much as she can like getting dressed and teeth brushing etc. She can do those things pretty good but some is done with right hand favoritism.

The best part of the day for sure was getting to see Jack! She told me she was telling everyone there “I get to see my two favorite guys today!”… and was texting me with anticipation.  Jack woke up from his nap at about 6:30 and I got him some dinner and got him fixed up in a sharp outfit and hair combed just right. It just boggles my mind how much this kid at 22 months old knows... as we parked in the parking structure, unprovoked by me he started to say “mama mama mama”. I said “yeah you’re right we’re here now..” I felt like I couldn’t get there fast enough. We walk in to the center and turned down her hallway. It was a site I will never forget for as long as I live - Elizabeth sitting on the edge of the foot of the bed leaning forward so she could see the main doors to the facility. She just couldn’t wait! It was a site to see because when I come to see her she’s usually lying down… definitely not sitting on the edge of the foot of the bed. As soon as she saw us she stood up. We got to the room and tears came. Good tears. Jack gave Elizabeth kisses and gave her a tight squeeze as I held him up to her. We sat on the bed and he laid with her as she read him some books. We also went for a walk and Elizabeth got to show off her precious little boy. We saw the Christmas tree and talked about all the ornaments. He really loves Christmas trees. Jack gave her another picture her drew earlier today and we taped to the wall. He really likes the get well balloon that is in her room. He loves floating balloons. The hugs and lots of kisses continued. The meeting couldn’t have gone better. Elizabeth will get to see him more now which will be so great for both of them… and me too!

Thanks again and again for all your supportive comments. I’m always reading them to her! They mean so much to us!

I will update tomorrow ….Thanks…

John

Day 5 Tuesday December 14th

Today was a pretty slow day for Elizabeth as we had to wait until the end of the day to get her to the Neuro Rehabilitation Center at Barrows Neurological Institute. The insurance came through mid day but the center is full and we had to wait for a bed. Most of the rooms are two to a room and we have one of those. Her roommate is nice and is a woman who is 36 like Elizabeth. She had a cancerous tumor removed in her brain. She is having some memory problems. Her name is Lisa and she will be here thru Christmas. It’s great to have a nice (and quiet) roommate. At any rate, the day was slow for Elizabeth before arriving at the rehab center at 7 pm. About the only thing really happening was the speech therapist coming earlier today. That went well as they practice leaning on syllables of words and to speak louder…. Elizabeth said “that’s funny, before this, people sometimes people would say I talk too loud” J Her voice volume is a week as well as the words are a little hard to understand. It’s basically that typical sound of someone who has had a stroke. This has improved slightly since the surgery. The left arm and leg are still seeing subtle improvements as well. Jaw still really really hurts.

Ultimately we can’t wait for her to get started on the rehab work and that includes her. Like her preparation for this whole thing, her determination, like I said before, is still there as her mom walked in on Elizabeth calling the insurance company to get their ass in gear about the rehab….  after all she’s been through in the last four days…Crazy huh?. She’s a tough little cookie man! It will be hard work for her but she is up to the challenge. She say’s “ I gotta get better for my boy” … she has been weepy thru out this time with missing Jack. It makes me cry too. She really misses him a lot!!! She keeps saying “ I’ve never been away from him for more than 8 hours… this is so hard to be away from him this long” Sometimes I wonder what’s harder for her…. this whole surgery stuff or just being away from him so long. I know how she feels as I need my fix after a long work day too. We just really start to miss him. I brought her a picture Jack made for her. She really liked that very much as I see her gazing at it with a little sparkle in her eyes. The great news about all this is they will get to see each other tomorrow!!! I hope I don’t turn into a sobbing mess as this will be a very emotional meeting! It will be so good for all of us!


She is still not eating to good but we’re working on it. She is trying but it’s hard. A few people had mentioned about drinking ensure and I failed to mention in past that she has taken sips of strawberry ensure as she knows from working for abbot all about ensure. She keeps telling the everyone including the staff that” a person can technically live off this stuff “. Hopefully the staff already knows that if they have a good rep (like her J). Unfortunately it was only a few sips a day when she had much worse nausea. Nausea has been better which is good. She asked for a strawberry banana smoothie and said she would try some mash potatoes. I went and got those off site. She did well with the smoothie and ate a few blueberries The most I’ve seen her drink at one time….probably about 10 oz. She wanted to wait on the mash potatoes as she said she was feeling full and was getting drowsy again from the pain meds.

Tomorrow will be a BIG day for Elizabeth. She will have a lot of eval in morning and then will start working. She will have a break from 3-6pm and will rest. Her and jack will then get to see each other in the evening. I have a feeling she will sleep good tomorrow night.  I will update tomorrow on what they will have started her on and how she did. I always kid her about how she’s an over achiever with everything she does.  This will be no different!

Thanks again for all your continued well wishes and encouragement!!!  I update her daily on all your comments! She is inspired by them! She always tells me to remember to thank everyone for her. She may be upto trying to leave a post soon.

Can’t wait for tomorrow!

I will update soon…

John

Day 4 Monday, December 13th

Today started with physical therapy specialist evaluating Elizabeth in the morning. They have recommended acute rehabilitation for Elizabeth which basically means intense rehab.  We were hoping that it would get going today but the insurance company was slow getting back to the hospital. It will start tomorrow. We are anxious to get started as could be imagined. She slept so so last night and is very tired still. Her jaw is still the biggest problem right now pain-wise.  The incision on the head ironically does not hurt that much as there are not a lot of nerves there but the jaw muscle being cut is a very painful thing. The stitches in her head are the dissolving type. The pain drugs make her really drowsy when they kick in. These drugs also make her nauseous which they give a med for that too. When she opens her eyes she gets pretty dizzy still and that also makes her feel nauseous.  Her eyes tend to be closed a lot for this reason.  All this leads up to not being able eat without throwing up.  Although, she did eat a little today which is more than it’s been which is good! We’re trying to bring in foods that she’s craving. Tonight we brought in pizza as she asked for it. Unfortunately the jaw is just too sore to chew that even though it was pretty soft pizza. She ate a few bites. She also asked for strawberries and blueberries and was able to eat a little of that once it was chopped. Also had a little vanilla ice cream.  Tomorrow we will try frozen yogurt as she has requested. She’s drinking a little soda and a fair amount of water. We really need to get this eating thing going… not even soft foods are working right now…. I hope this improves soon. Her strength over all has improved each day. The left arm/leg weakness has also improved some since yesterday. Speech and face are a tiny bit better. She was also able to take a shower again today and did well with that with a little help from me. She also walked the circle of our wing once this evening which was great and her balance is pretty good. Even though she doesn’t sound/look the same she still has her same funny wit about her!! She is constantly cracking up the staff here. Again, which is so amazing considering the situation, but that's just her J …She and I had a really good laugh together today (which was the first time in past 3 days) as I asked her if she needed anything and she said “a head transplant”. It was a nice moment because of the laughter but also because I haven’t seen her smile that much since all of this (her left side face muscles don’t allow her to smile easily).  I would often describe Elizabeth’s smile as having the power to light up the room! Those of you who know her know what I’m talking about!  It still did that for me! .

Elizabeth’s mom Michelle was there this morning and I was there in the day and evening time. Michelle and I have been a good team through these last 4 days. She has been a gigantic help with Jack and Elizabeth both! My sister Rebecca and brother- in-law Tom have continued to be an amazing help with filling in all the loose gaps from doing to laundry, to supply runs, to watching Jack, to pizza runs for Elizabeth, to just great moral support.  They have also offered up their home as Elizabeth transitions into rehab and Michelle and I leave the hotel which is on the campus of the hospital. The Hampton Inn could not have worked out any better… nice place that’s clean, with all the stuff you need especially being so close. I can walk to Elizabeth room in under 5 minutes. I was very thankful that it’s so close. This place is a must for anyone coming here to have a surgery at Barrows Neuro.  Tomorrow is a big day with starting rehab but also packing up two hotel rooms with a 22 month old in tow and setting up at Tom and Rebecca’s house.  Thanks so much Tom and Rebecca for everything including your house!

Elizabeth is set to move to the rehab wing at Barrows which obviously is the place you want to be for this. She should be over there by mid day tomorow (Tuesday). She will have her own room at this facility and will be there for at least 10 days and would then continue at home… at least that is the tentative the plan. We’ll obviously know more in these first 10 days of rehabilitation.

Elizabeth continues to ask me to tell you all that she is so grateful for all your support and positive energy. I continue to read her all the comments on the blog left for her and I. She hangs on to every word as I read them to her! I see in her eyes how much it means!!!!

 I’m am pretty worn out as could be imagined. These days are so tiring and go by so fast I often can’t remember what day it is or what time it is...  I will try to sleep now…

Thanks so so much everyone!

John