If you do the math, I guess that means that I have not posted in 266 days!  My apology for letting so much time go by without sticking my head up to say something. 

 Being home has proven to be much more challenging time wise for me to be able to post. While Karen was in rehab and especially in intensive care, I had tons of time to write as I sat with her since she slept so much.  Now that she is home and improving, there is not as much spare time. 

As I read my 100 day post it gave me some prompts as to what info might be interesting at the least. Karen did pass her swallow study some months ago and has been cleared to eat whatever she wants, with appropriate caution. She still uses a technique called a chin tuck in order to shorten the distance that her food covers from her mouth to get past the critical epiglottis area which is where her main struggle lies. The main foods that Karen struggles with currently are leafy veggies like lettuce, spinach, etc.   These tend to cling to her throat and become a bit problematic to swallow. The way around it is to throw her salads in a food processor. This really is very helpful for her when we do this. Her facial muscles on the paralyzed/frozen right side have strengthened a bit to the point where she can control her foods and particularly liquids much more than a few months ago.  Karen can drink through a straw or take small sips from a glass. The straw is a recent and welcome addition for her; it makes drinking much more manageable. 

Karen’s speaking continues to improve.  Her singing, not so much yet, a sad but funny for us right now, inside joke. Many of you may not know, but Karen has a beautiful singing voice hidden inside of her.  Her voice is truly awesome and sadly missed by me. Hoping to hear it blossom again one day soon!  She has written and recorded original music and songs in the past. She misses doing that very much. 

Her left arm and hand are slow to recover thus far but there seems to be some slight improvement as time progresses. We were told many months ago that the arms and hands often take longer than legs to come back. Karen works very hard on her strength and range of motion on her limbs for sure. 

All of Karen’s therapy is away from home now which is one reason that I have less time to write here than in the past.  Lots more driving to and from therapies.  She currently goes at least twice a week for Physical Therapy and twice for Occupational Therapy towards Baltimore. It’s a trek but the therapists are awesome and challenge Karen in a very positive way. They love her but kick her butt in therapy regularly, which is great.  The same is true of Karen’s Speech Therapist in Elkton. She is awesome as well and plays no games with Karen’s work either. The speech therapist has started a stroke survivors support group at the Union Hospital. Karen was asked to present some of her post stroke art and speak to the group. She did that a few weeks ago and it went very well. 

One of the areas that we are still pursuing help and improvement in is Karen’s right eye. Her eye is still crossed and does not close until she falls asleep. She is still always dizzy and has double vision. If her eye could normalize, we both feel that it would really propel her forward in some other areas. We did visit an eye doctor who was recommended to Karen by a Neuro Ophthalmologist. The Dr specialized in prism lenses and the hope was that she could make lenses that would bring Karen’s eye back into position over time. After two very strenuous eye exams, she decided that Karen’s eye was too extreme for her to be able to offer a treatment. We have not given up. We also visited a Neurologist who employs the use of a very specific form of Accupuncture that will target Karen’s brain and hopefully be able to render some healing. He gives Karen a 30% chance of having positive results. That is 30% better than if we don’t give it a try!  Hoping to start with him soon. 

As a result of Karen’s hard work and determination, coupled with the same from her therapists, she is able to walk with assistance. She started with standing up with a spotter (me, her sister Tracy or her therapist) and then moved to walking with spotter and a device called a Hemi walker.  Next step was a quad cane which is a normal looking cane but it has 4 individual feet or bearing points somewhat close together.  Next after that is the single, traditional cane. Sadly for Karen, I shopped for her cane and discovered that you can get black, aluminum color or pretty much any color and all of these choices are the same price. Karen looks pretty cool walking with her camouflage cane!  Until Karen’s eye situation is improved greatly or solved, she will not be able to walk without a spotter. 

The 12 months since her stroke brought some other treats our way. In early September, Karen got the Delta variant of Covid and I got it 3 days after Karen did. Thankfully she got through it in about 5 days. She had a fever of 102.5 one night which was freaking me out but it did not last. I on the other hand got Covid really bad. Went to the hospital 2x but never was admitted thankfully. My O2 levels went down to 84 and I became delirious. Our son Sam took me back to the hospital and I ended up on a stretcher with an IV attached for 9 hrs. I was on oxygen for over 3 weeks and lost 26 pounds in that time. I’m not what you would call slender so the weight loss was not the worst thing that ever happened to me but the reason was not great. 

As a result of my being so sick (weak), Karen began transferring from wheelchair to toilet or bed as needed by herself. She got pretty good at it. As I was recovering, I would help her transfer but was also trying to let her do as much as possible on her own in order to allow her to build strength, technique and coordination. On December 27 at 3:30 am I heard Karen head to the bathroom. I was thinking I should get up to help her but did not due to laziness and also a desire to let her continue to improve. My bad; Karen’s transfer went bad and she fell. She broke her left (affected side) femur just below her hip joint. I heard her say whoops, a loud crash and a horrible scream of pain and terror. What a horrible thing. I ran into the room since I was sleeping on the couch across the hall that night. She was in a heap on the floor in extreme pain. She was scared because she did not want to go to the hospital. I called for help from our sons cause I did not want to hurt her worse while trying to lift  her from the floor. Sam heard my call and came to help. We managed to get Karen off the floor and into her wheelchair. We called 911 and Karen went back to the hospital. She had her femur literally lag bolted back together by an excellent surgeon. The device that they used looked like something that I could use at work in a timber frame. She was there for 6 days. Karen was back to therapy in Baltimore within 2 weeks.  As a result of the break and surgery, Karen was set back in strength, coordination and confidence. She is walking with assistance again but she’s definitely more skittish since the fall. She’ll get it back. 

There is more to tell I’m sure but my finger is running out of ink. We have continued to be the recipients of much love, compassion and support from family and friends. Not to be corny but this has shown us that many of our friends are actually family. We knew it but this last 12 months has reiterated that fact to us. Not sure how often I will write or if I ever will again but like to communicate when I can. 

Thanks!

Joe