Celebrating my brother's accomplishment

My brother is a really great guy. He's sweet, compassionate, considerate, and simply "good people". He is a super talented artist too. He has been working on his baby...a comic book for as long as I can remember....well maybe that's not a good analogy...since I do have brain damage but my long term memory is perfect. :) My brother, Christopher, really has been working on his comic book for years and he just got it printed /published and available for sale today. I am so happy for him, to see him really coming into himself, following his passion and dream in life to have a career in art. Here's the link to check it out:
http://www.comixpress.com/store/index.php?main_page=product_info&cPath=0&products_id=1927

Maybe I can talk him into creating a character that has a brain injury and a "super power" to over come all the deficits from the brain injury. I guess "super heros" probably wouldn't get brain injuries though, so maybe that's a bad idea but, sometimes I wish I had that exact "super power"!!!
As far as an update on my condition, I'm feeling the best I have felt in the last two years. I noticed a dramatic improvement this past week, and we are obviously very happy about that. My vision in particular, is MUCH better! My eye doctor, Dr. Garbus, even said that he thinks I'm clear visually to drive again. I'm not cognitively prepared to drive, but my vision is getting so much better! :) I'm not done yet...but we're still moving in the right direction and that feels good. 

Occupational therapy graduation

Hold the balloons, and the champagne...it is a bittersweet milestone. While I am happy to have completed one part of my formal rehab program, it is with some degree of disappointment that I am discharged from some part of my therapy and still not 100% recovered. While I do know the statistics,"It is very uncommon and pretty unrealistic to think I'm going to ever be back 100%"...I still hold onto that hope and dream in my heart. At the same time, I know how lucky I am to have made this much improvement already. I also know that just because one part of my formal rehab has concluded, that does not mean that my opportunity to improve is over! It just means that I'm going to have to work that much harder and really step up my game to make changes. Last Wednesday was my last day of occupational therapy, not because I'm "cured" or all better, but because I have met all the goals that were laid out and partially because I think they are not used to having patients that are as "high" functioning as I am. Many people are discharged, sooner, and with less ability to function. I have been very lucky(not to say it came easy, this rehab stuff is hard work...mentally and physically). I can now do so many things, which is awesome!! But don't expect me to do more than one thing at a time...just not happening yet. As part of my last OT assignment they had me cooking something and trying to manage distractions. I'm not sure how exactly they rated me as doing "well" because while I did make some really yummy Smores cupcakes, I left the stove AND oven on. Whoops! This is not the first time, I leave the stove on almost every time I cook. They suggested I set a timer to remind myself about the stove, but I forget to set the timer. ;) Still trying to work on that, and in the meantime I never cook when Jack is awake...way too dangerous. I just can't remember anything....it's one of my biggest obstacles. I'm really thankful and grateful that my speech therapy is not over yet...she said she will be working with me for at least another month and I hope to continue to progress. No rest for the weary around here.  As always, we'll stay focused on how much better I am and all the things I can do!! And of course, still, thankful for everyday!

Mother's Day

Yesterday was Mother's Day and as all things are sweeter since prior to my diagnosis, surgery, and stroke....Mother's Day was no different. It was a wonderful celebration of what matters most to me! I feel so lucky to be able to not only participate in mothering Jack, but to REALLY be there in every way for him. Being Jack's "mama" is the most important job and privilege I've ever had, and being messed up in the hospital was devastating to me mostly because of him....I would cry and think ,"How am I going to take care of my sweet boy like this?" He has motivated  me to be my best throughout this whole process. He is why I had surgery in the first place because if I didn't have surgery I didn't think I would be well enough for him as time passed, and I want to always be my best for my boy! It's amazing how a two year old boy could get me to move mountains....So lucky! What a blessing!

More seizures?

This past week has brought continued awareness to the reality of what we are dealing with....constant uncertainty. Now that my surgery is over and my rehab is well underway...we are always looking toward the future wondering what it will hold. As an eternal optimist, I am always certain that I will make a full recovery or at least keep getting better and that all this craziness will someday be a thing of the past...then just like that...another test reveals that may not be the case...at least not so soon. Anyway, I had an EEG (a test that measures electrical activity..seizures.. in your brain) this week and to make a long story shorter...I am still having abnormal brain activity..AKA seizures. Bummer! The positive side note is that I am not feeling them like I was prior to surgery, but the reality is that they are still occurring quite often (about 10 in the 20 mins. I was being tested). This is pretty significant because for many people that undergo surgery, relief from seizures is sometimes a positive outcome after the surgery. I was hoping to be lucky in that respect. Not yet, maybe in the future. I will just cross my fingers and pray that I remain asymptomatic because while I am having several seizures a day they are not currently affecting me much except maybe contributing to my fatigue. As for now, it's the same routine....work on getting better, and continue to look to the future in an optimistic light. Focus on the positive, disregard the negative, and work on the things we can control/change. We'll just have to retest in another few months and see what happens then.

Four month reflection!

A few days ago marked the four month anniversary of my surgery/stroke.We are very grateful for the progress that I have made and we realize there is still a long road ahead to get all the way back. Sometimes it seems unreal...all that happened. Sometimes, I can't even believe how "messed up" I was after surgery and how much better I am now. The brain is amazing!!!! Just four months ago, I was essentially paralyzed on my left side, not to mention all the other problems I had.. The doctors called it weakness, but I couldn't move my left arm or leg at all at first...Initially, all I did was think incessantly about moving anything I could. When I couldn't move my left arm, I laid in bed and moved my left arm with my right arm again and again. Same thing for my leg. I concentrated on wiggling my toes/fingers and was pleased with any movement. From what I had read ahead of time, I knew I had to get moving ASAP. It seems to have worked, thankfully!!!  I kept asking the nurses to help me get up, but they always told me that I was too weak.(I was probably driving them crazy!) I'm sure they were right, but I kept asking...hoping for a different answer.  Just four months later, I am thankfully able to take care of Jack(lift, carry, cuddle, and sometimes wrangle all 31lbs of his wild 2 year old body), alone, sometimes. I don't have the endurance to care for him all day as I had in the past, but we're working on it. Jack's a very spirited little boy and I think he could wear even a non-brain injured person out, so the goal of taking care of him entirely unassisted is a pretty high one in my mind.

We made some changes about a month ago in terms of rehab. I wasn't 100% pleased with the last rehab, so we interviewed and switched to a place closer to home...and so far it seems to be working out better. I also started seeing a neuro-optometrist a few weeks ago, to help with my eyes. He gave me the best news yet after the initial 3 hour assessment. (Yes, 3 hours at the eye doctor...crazy!!) He said that while I have a lot of problems with my brain-eye connection, he thinks I'm going to get much better if not 100%. One of the problems with working on the brain-eye problems is that for the exercises to work, you have to work yourself to the point of nausea...so it's really uncomfortable...and you have to do the exercises 6 times a day or more. Oh yay! So I feel like throwing up 6+ times a day, lovely!! There better be a pay off! I do notice some slight improvement already, which is so great! The new rehab happens to already work with the eye doctor which was another bonus in making the switch. Another new area of focus has been on my jaw. During the surgery, they cut one of my jaw muscles...and it was super painful at first. Now it's not so much painful, but I can barely open my mouth. Eating things like burritos, sandwiches, burgers...is pretty hard and something I would like to resume without discomfort. At the new rehab they are doing ultrasound and have given me new jaw exercises to hopefully restore my jaw range of motion eventually. The rest of my rehab is going well, I think. The cognitive issues(memory, information processing, attention, multitasking,  and distractibility) seem to be the slowest to resolve and the most difficult to work on...but I'm getting there. I did find out last week that I had forgotten how to do long division and subtraction. It has been so long, and I didn't imagine I wouldn't be able to do it....but I always use a calculator....so I figured I better try while I was working on my "homework". Sure enough, I got them wrong...several times! :( Glad to say, I have now remastered tying my shoes, telling time, long division, and subtraction ! It's moments like that, that hit me....what else did I forget??? And also, how lucky I am that I'm not worse off. We continue to take it one day at a time...never knowing what surprises the day will hold, and always thankful that we are blessed with the opportunity to live another day.

GIANT sigh of relief!

I had a 3 month follow-up MRI last week, and according to my local neurologist and neuro-radiologist my cavernous angioma had only been partially removed!! This is NOT what we wanted to hear. I had this scary surgery so that we could be done with cavernous angioms...done with bleeding brains...done with worrying about every headache...done with seizures.... and done with every strange neurological symptom that may arise as a result of the monster that was in my head. According to these two ladies, my latest MRI showed a small piece of the very monster we had hoped was gone forever. The problem lies in the fact that these things(cavernous angioms) are known to regrow and re-bleed (please, never again!!!) if they are not removed completely ...hence why we researched the surgeon so explicitly and why we went to Dr. Spetzler specifically. He is supposed to be one of the world's best neurosurgeons specializing in cavernous angioma resections(removals). As scary as the surgery was, and as challenging as my recovery has been, I am still ok with the whole process as long as the thing is out of my head...completely!!! I have not had very reliable MRI readings here locally though...so for the past week we tried to remain hopeful that this was just par for the course and consistent with my past experiences...Maybe the local doctors had misinterpreted the latest MRI? Yep!! Same old routine. We sent my latest MRI to Dr. Spetzler as soon as we received the bad news; and his resident called Thursday night to give us the good, very good news that my cavernous angioma has, in fact, been fully resected! Yippee!!


My experience has been that cavernous angiomas are virtually unknown in the neurological community outside of a few really fantastic experts. This is one of the greatest obstacles in finding good treatment/care for this condition. Since my first diagnosis in Aug 2009, I have received so much wrong, dangerous, unreliable, and scary advise from countless doctors with a "neuro" as a part of their title whether it has been a neurologist, neurosurgeon, neuro-ophthalmologist, etc...you get the point. That's why it's so important to be an advocate for yourself if you carry this or any other serious medical diagnosis. For now...., I'm in the clear...and we like it that way! This latest scare is yet another reminder to always cherish those you love and to be thankful for everyday because everyday is such a gift and blessing.

Progress to report

Let me just start by saying, "Life is good!! Really good."I continue to be grateful for how good I'm doing especially considering where we were almost three months ago. We are thankful for all that I can do and continue to work on all the things I can't do yet...or can't do well yet. I have been in rehab for just over a month and for the most part it is going well. I am meeting/exceeding lots of goals and that is something that makes me very happy, especially because my #1 goal is to take care of Jack. I had missed him so much while I was in the hospital and even at home when I wasn't strong enough to pick him up. Well, I can pick him up now and I have been able to do so for about two weeks...huge accomplishment!!! and I feel like I'm getting my boy back. (tears of joy!!!) I got to take care of him by myself last Tuesday afternoon for the first time since surgery/stroke and it was like bliss. I got to feel "normal" again. Thrilling! He's also starting to know that I can do more too. He'll ask me to pick him up now, but he knows to be gentle and to help me when I ask him. He says, "Mama has an owwe on her head", and then he taps my head gently if I'm holding him. It's so precious. Sometimes when I'm carrying him I will ask him to help me by holding on and he does...sometimes I just ask him because it's so cute how he wants to help me and I love his tight squeezes. :) A few nights ago was another first. John was reading him books and putting him to bed, then he was rocking him like we always do. Normally Jack will request a certain song for you to sing to him and John thought he was requesting a new song, but it turned out he was saying, "I NEED Mama". Of course, I couldn't be any happier to fulfill his request until I figured out he was just playing us for more delay time. As soon as I got in his room to rock him and John left the room he said," I NEED Dada." My ego was instantly deflated ;)  So the short story is that I'm doing lots more with Jack and I'm super happy about it. As for rehab, I said for the "most part" it's going well and by that I mean occupational therapy and physical therapy are going well. Speech therapy...not so much. Speech therapy is the one area that has the least objective criteria, so maybe it's also more difficult to note progress, but according to John and myself there is much progress to be made. While I have made huge strides since surgery, my speech is still slightly slurred and somewhat monotone. We were working on what's called prosody and intonation in rehab in Phoenix, but they have not focused on that in this new place. I'm not happy about that because I feel like that is where your personality comes through in your speech, and I want to still be me once I'm recovered. I used to be pretty animated (maybe too much) and now it's the opposite, but according to the therapist, working on those issues are not priorities because they are not considered medical necessities. I have a ton of other deficits that fall into the speech therapist's realm too like information processing, focusing attention, multitasking, short term memory issues, and the list goes on. So to me speech therapy is really important, and I was pretty upset when she told me last week that she was going to reduce my time spent on speech therapy. In my opinion, I need more time in speech therapy not less!! John and I had a meeting with them last week to discuss this very issue and we didn't feel good after the meeting, so I'm not sure if I'm going to have to find a new rehab or maybe just speech therapy somewhere else. What I do know is that I'm not giving up on making progress on any of my deficits yet!! We'll see how it turns out, because I really don't want to start over with a new rehab altogether...but I'm not ruling it out either. Transportation (since I can't drive) has been a pretty big issue too so it just makes more sense to have all the therapies at the same place ideally. We'll work it out one way or another and we won't settle for any thing less than effective thorough therapy although at the end of the day, I'm just happy to be alive and as always, we continue to be be thankful for everyday!!