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Jun 02-08

This Week

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Hello all! I think 1-2 posts per week is about all I can muster at the moment; seems like the right cadence for now. I have not been glued to the comment section the way I was back in February & March - please do continue to leave comments as we will eventually get to reading ALL of them... but if you have a specific question or need you are welcome to email me or text me directly. 

Megan continues to work very Very VERY hard in her therapies. She and I talk on FaceTime together every day and I can really see and hear the difference in her speech. She still has a tremendous amount of trouble and frustration getting out any sentences other than the same few things that we all tend to say over and over again (e.g. how are you, i'm good, i love you, ok bye, etc). Peter and the therapists send me short videos most days showing Megan's progress in therapy - it is really exciting to see her taking steps forward (LITERALLY) but it's also very hard to be far away and VERY hard to think about the contrast of what constitutes "good" now versus back on February 11. 

A lot of people ask me, "How is your sister doing?" and to that I don't exactly know what to say... that's kind of like asking a parent of a newborn, "How's your day?" Well, let's see... I have food to eat, a bed to sleep on, and a car that functions... but also I'm covered in poop and I have a migraine because of the nonstop screaming and lack of sleep. So... I guess I'm good?  This is how I feel about answering questions about how Megan is doing. She isn't in the hospital anymore, she sleeps well, she wakes up, she brings food to her mouth, she says some words that help us know what she needs and wants, she listens intently when people talk to her, she smiles, she watches Dodgers games... but also, she can't dress herself, can't safely get from one room to another without supervision, can't prepare her own food, can't even say a simple sentence such as "I don't want tuna fish for lunch." It feels VERY wrong to use the word "good" when describing how Megan is doing, though considering where we could be, things are better than good. 

Physically, Megan has made a lot of progress since February. She has full normal use of her left arm and leg. The right arm and hand remain entirely nonfunctional. She has absolutely NO use at all of her right arm, though there have been some intermittent twitches of some of the muscles on the right. Her right leg is the real wild card - there are some days or hours when she seems to be moving almost every single muscle group of the right leg, and other times when it seems a massive undertaking just to get the tiniest firing of a hip flexor. We are incredibly fortunate that the home health physical therapist, Denise, connected with Megan very quickly over some common interests (barre! fitness instruction! tennis!) and they work quite well together. Denise knows just how much to push Megan to keep working hard, and Megan definitely knows how to work HARD. 

Occupational therapy is also going well. Megan LOVED her OT, Samantha, from the moment we all met. She's just one of those warm, friendly people who makes you feel appreciated. Samantha has been helping Megan work on techniques to dress herself with as little help as possible, and do practical, functional things like open drawers, open the fridge, prepare a plate of food, etc. The biggest accomplishment of the past week was when Samantha helped Megan prepare her own coffee!!! Peter texted me about it and I immediately started talking about all of the ways that Megan might be able to start doing her own food and drinks... and Peter very gently and lovingly reminded me that Megan simply made ONE cup of coffee with A LOT of help from Samantha, so we aren't exactly starting a live-from-home cooking show out of their kitchen quite yet! Progress is progress, and being able to help herself to another cup of coffee someday soon would be an amazing next step. 

THANK YOU all for continuing to read, follow, and send support. We really appreciate all of the love and light you're sending our way. 

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