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.

Thursday, December 23, 2010

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                                                                                                                                                      

4 comments:

  1. Merry Christmas you guys. Have a great one, you three deserve it. It wasn't something I thought of until reading Kelley's Angiomas Suck blog, but how nice that everyone is home in time for the holidays.

    Wonderful news, I'm sure Elizabeth will get better and better. She is young, brave and resilient.

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  2. Just wanted to wish you all a very Merry Christmas... Jack is such a handsome big boy... Enjoy this special time together. Have a great day!

    <3 heather

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  3. Just wanted to wish you guys a Merry Christmas! Was catching up on your posts! Glad you had a good visit with your neurologist the other day. sorry its taking you awhile to get into seeing a neuro-eye dr! Wish it could be sooner for you. I know a few people who have tried prism glasses. You might want to ask about those. It might help. Do a search on the old forum and you will see several posts about it.

    Hope you were able to look at lights last night!

    Merry Christmas!!

    Hugs!
    Becky

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  4. So glad you can be home for Christmas and to start a new year. I, too, am sorry about your diffulty in getting to a neuro-eye doc. Mine was very helpful to me, and he was familiar with CA's, so I have been lucky. I have to wear glasses with part of one lens blocked off because it is too soon to think of any medical intervention. Anyway, a very happy new year too you and your wonderful family.

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