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Forward Ahead...

First, thank you for continuing to keep Missy and all of us in your thoughts as we march ahead. It’s one of those things where as time goes on the impact and severity lessens, or so it appears. Everyday life takes over. For us, this is now our life. For Missy, her new life is not the same and she is working harder for the smallest things that we surely don’t often think twice about. I want her to shoot up out of her chair and walk across the room. I want her to yell a sentence at me. I want to pick her up to go to out shopping without a day of planning, where she can just walk to and sit in the car. Sometimes I daydream when we did not have to worry about health insurance coverage, or planning her schedule, or the best wheelchair, or what medical advances and research will they be working on next, or what the future holds, how much she will progress, or hardest of all, why this happen. 

That brief realness said, Missy is really making progress. Friends who see her every now and then continue to be impressed and wowed when visiting. They even say she is beginning to look like Missy again. Her therapists remain optimistic! PT indicates she will not need a motorized chair soon. That is huge. She has a new chair she is working on operating doing a kick ass job. Missy’s head control is so much better. Missy has now been able to stand on her own at the parallel bars and is working with the therapists help to climb stairs. She uses an “Alter G” treadmill to facilitate walking movements which helps with the repetition to retrain the brain. Missy has started outpatient Speech therapy nearby and the SLP is wonderful. In the last few months, Missy has continued verbalizing more and is expressing a real desire to the SLP and us that she wants to talk! I often hear words coming out that may not sound like our words, but I understand them. The other day I recognized a sentence! One of the SLP’s in communication has an app she devised and Missy uses to communicate (although slower than the board since she is getting used to it). She is working on texting!  In OT, she is now ready to incorporate ADL’s (adult daily living) activities into her therapy when before they did not believe she was yet able. These are everyday tasks we do to take care of ourselves. Aside from OT, PT and Speech, Missy takes part in Feldenkrais, Music Therapy, and Biofeedback regularly.

We often remind Missy how far she’s come and that's important for her (and us too). It is definitely encouraging. I think back to the early days and Missy is worlds away from them. I look forward to more progress, however slow. Missy is surely determined and I do believe that the hard work and motivation is paying off! Please continue to cheer her on in some way and we do encourage if you were or have been a friend to Missy to keep in touch. Forward ahead!

xx Jessica

 

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We're ready to get movin'...

Melissa’s typical day is long. She works hard to do some of the most mundane things we take for granted. Every day. She doesn’t give up and she doesn’t ask why this happen. She doesn’t feel bad for herself or want anyone to coddle or pacify her. She has Speech to start the day, then a break before Occupational, then Physical Therapy. Twice a week, in order to extend her practice with vocalizing and restoring her voice, sustaining the breath, Missy works with an experienced Music Therapist.  We use different parts of the brain to do things like sing and follow along with melodies. She has been working from the beginning on a Mind Body practice called Feldenkrais. She receives Reiki, she gets massages, Acupuncture.

Anyone who knows or has met her realizes Missy is not an ordinary person. She never has been. She has many interests and talents. She fiercely values her family and her work is her passion. Missy needs to begin returning to things she loves, even if it’s part time. She wants to go to the movies, to the spa, to see art, to go to the lake. We want her to do these things too, and we want her with us. This girl deserves it and she has earned it. The therapists said she is able to ride in cars without her chair. This is actually a big accomplishment that she now has the strength in her upper body to hold herself up. But that will not work when running errands or if she’s with someone who can’t properly transfer her, especially if she is not going just from point A to B. It is a process.

We are hoping to fundraise in order to purchase a vehicle in which she can get around with more ease.  No one is giving up, especially not Missy. This doesn’t mean she will always need a van. The costs of wheelchair transportation will not work. One ride can be as much as $300, and possibly more if it’s a holiday or high volume. It makes sense at this point to look into. Just to think that we could all go places together again, we could pick Missy up and go about our day together. I truly believe Missy will continue to make more progress once she can start to live again. She’s on her way.

 Melissa and her dear friend Bridget Baylin at last night's Cure concert at Merriweather! 

Melissa and her dear friend Bridget Baylin at last night's Cure concert at Merriweather! 

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MELISSA IN BALTIMORE MAGAZINE!

The most generous and beautiful article was released this past March in Baltimore Magazine and we are overwhelmed by the outpouring of emotion and inspiration Melissa's story has given so many. Many thanks to Baltimore Magazine, the staff including the most sensitive and insightful writer Jennifer Mendelsohn, super talented Art Director Amanda White-Iseli who got the creative treatment so right and the brilliant Editor Max Weiss who spearheaded it all. 

The article shares Melissa's story from the beginning, to where she is now and the thoughts and feelings of those closest around her. How it's affected us all in every way possible. How we cope and how we move forward. The title, 'Magic Surrounds Her' came from a post-it note that was on her desk at work that I (Jamie) had noticed a few days before the stroke.  I remember when she put this little note up and said it out loud. She didn't really know what it meant, but it kept rolling around in her psyche. It still means something to me. The magic is that she is still with us, that she is progressing. 

Please read this incredible story online here. Back issues of Baltimore Magazine, March 2016 can be ordered by emailing  frontdesk@baltimoremagazine.net.

 Magic Surrounds Her. 

Magic Surrounds Her. 

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LOVE + LIGHT

Last year we had our first fundraiser for Melissa at the three month mark of her stroke. When we think about where she was then to where she was now, we are blown away. Last year Melissa was locked-in, and couldn't even move a finger—much less communicate with us or sit comfortably in a chair. This year she is not only able to do all of those things, but she was actually able to attend her own event! This is truly a miracle and a testament of her strength and will to keep going and progressing.

Don't miss her next fundraiser in DC on September 27th at Redwood Restaurant + Bar! Food, drink, friends and silent auction. 

 Melissa and her family enjoying the beautiful evening together at Love + Light Baltimore.

Melissa and her family enjoying the beautiful evening together at Love + Light Baltimore.


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WHERE WE ARE NOW.

MelissaandKingston.jpg

Hi all- I wanted to provide everyone with a brief update. Melissa is making slow progress weekly. Just a couple weeks ago, it was a line or two on the page when practicing handwriting. Now, she is able to form more clear words and work on perfecting her writing through increased fine motor coordination. She is making small strides in oral motor, vocalization, expressing herself nonverbally, gaining strength, head and neck support and control. Melissa has some hard days and moments but overall maintains a great spirit. She really looks forward to her time off with family and friends, we laugh & cry a lot. Through some training and effort, she has demonstrated the ability to answer her ipad for FaceTime! The family is working diligently to further her progress and discussing plans for the coming months as well as the long term. So much is unknown, we have never taken these steps and have many guides to help, yet really no one but ourselves at the end of the day. We are excited for some changes in the coming months for Melissa and she is eagerly anticipating as well. You are all the BEST and thanks for lightening the load. Much love.   -Jessica

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