Welcome to our blog! I originally started this blog in November 2010 just prior to having a major brain surgery to remove a large bleeding cavernous angioma from a deep part of my brain. You can best understand the gravity of our experience by reading the first several entries.(Nov 2010-Dec 2010) I wrote the first one and my sweet, adoring husband, John, wrote the next several (while I was too sick to do much of anything) that documented surgery, immediate recovery, and our reaction to the surgery complication (stroke)that was revealed 2 days after surgery. This recovery process has been difficult but we are making it. We appreciate all the kind words of encouragement we have received and we would like to thank everyone that has participated in helping us along this difficult journey. Also, if you have any questions about my personal experience, please leave them as a comment or contact me directly at thankfulforeveryday@yahoo.com and I will respond although I am not a doctor and this is not a replacement for medical care or advise. Please ask a real professional, or probably several. :) I hope to be able to help at least one person along the challenging road of brain surgery and recovery.

Wednesday, December 15, 2010

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

13 comments:

  1. John, Thank you so much for all of your updates.

    Elizabeth, I will be thinking of you all day today as I know you have a big day ahead of you. I have no doubt that you will fly through it and make great progress though, especially since you have the motivation of seeing Jack this evening! Imagining your reunion brings tears to my eyes...happy tears of course :)

    Sending lots of positive engery your way...

    Lindsay

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  2. Elizabeth is such and incredible inspiration!
    -rachel

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  3. Elizabeth,
    I was soooo happy to read your post @ A.Alliance - wow, you're amazing! :)
    Neuro Rehab will be GOOD for you and will help provide the 'tools' for getting back on your feet again. They will work you, but it's all for the GOOD.
    Cheering you on!
    PattiG :)

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  4. you are in my prays, and you are going to get through I sure of that, you all have the fighting spirit and love and humor, I think it´s wonderfull and soon you will be home together as a hole little family

    Tarja

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  5. Love the thought of your family reunion later today. You will be missed Saturday,
    but all of the good news John posts is wonderful. Keep it up Elizabeth. Our love and prayers go out to you and your family. Thanks John for your extraordinary efforts to keep us connected. Love A Cathy & U Joe

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  6. Elizabeth,
    I am a blast from the past,your sisters childhood friend, Shannon (Davis). I saw the your blog link on Juliet's fb and felt immediately saddened hearing what you have to endure but that was quickly followed by inspiration and hope. I am a person who believes in prayer and your recovery and well being have been in my daily prayers since i learned of what you are going through. Your strength is beyond admirable. I can feel the love from you family through your husbands words and I know with that kind of love and support along with your determination, you will have what it takes to make it back to health.
    Lovingly,
    Shannon

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  7. Elizabeth, John and Jack

    So sorry to read about Elizabeth stroke... I have been away a couple days and was truly saddened to read that update. I wish the best for all three of you, and Elizabeth is in my prayers every night.

    Happy to read about the laughter you too could share together the other day. It's a tough time right now and moments like that are a great thing to share with one another.

    John i'm back at the 209 phone number so if you ever need to talk, no matter what time of day or night feel free to call.

    best wishes
    Josh knight

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  8. Great news drinking the smoothie!! Yummm!! Doing good Elizabeth! Keep up the good work! Just don't over do it! Glad you will be able to see your little boy tomorrow! What a great time that will be! I remember when I got to see my kiddos for the first time (it was the longest for me as well after my surgery)! Enjoy the cuddles and hugs! They mean more now!! I'll be down at st joes for a support group mtg for my other neurological disorder, if you'd like a visitor I might stop by and say hi if that's ok. It would be around 1:15 or so.

    Hugs
    Beckyinaz

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  9. Found this blog on a search for information on Cavernous Malformations because a friend's daughter has just been diagnosed with one. I have just read all your husband has written.
    I want to say I hope you stay strong and recover as quickly as possible. You sound like an amazingly strong person, mother and wife.
    My own son has a brain AVM - brain stuff is not for sissys....Keep up your fight, be tough. Sending you healing thoughts and prayers from Canada.

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  10. John and Elizabeth,
    I wish I could be there and wrap my arms around each of you and give you a big hug. Please know I am thinking of you and praying for you.
    I love you,
    your Mother and Mother in Law
    Alice

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  11. I am so happy that she gets to see jack it will be good for her, for both of them.John to make her laugh tel her I said "am SHO SHORY". Ya I know it sounds funny but it's a jock see if she remembers that. As always am praying for you guys and thank you for keeping us updated,it's just so hard to have some one you love so far away and can't do anything to help.
    I love YOU Elizabeth....
    Melina

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  12. My thoughts and prayers are with you and your beautiful family. I know you are one tough chock bcuz you had to put up with me during your L&D orientation. You are as always an inspiration. Thank you John even tho I never got to meet you for keeping us up to date. You are a god send. So excited you get to see the gorgeous Jack and enjoy some family time. Heal up and we will see you soon. Love you, KP from Tarzana L&D

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  13. Awww Sorry I can't spell. But I meant to say CHICK!!! :)

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