Category: Uncategorized
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You take the good, you take the bad…
Today was rough. It began at 130 this morning when our warrior princess woke unable to sleep due to coughing and congestion. Medical mama’s know that the “sick protocol” is no joke and take it seriously- one “junkie” chest day and it begins.. the battle against pneumonia. For neuromuscular disease, we’re learning that lungs are…
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Make A Wish Countdown
Counting today ( as Max prefers) we have 16 “sleeps” until we leave for Alexia’s Make a Wish trip to the Give Kids The World resort near Orlando. We’ll enjoy five days and nights in the most magical place on earth as we’ll do three days at Disney/ Epcot and a day at Sea World…
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Up, up and away !
Alexia got the chance to climb a HUGE tree on Sunday – the University of Michigan Dance Marathon supported this free adaptive event – wow! She loved every second of it and I am so grateful to UM for the opportunity to have her participate! No idea what the Dance Marathon is ? Neither did…
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Relationships Matter…
I was watching my girl today come off her bus after school, and she was BEAMING. This is a HUGE piece of #rare parenting (for me at least) that so much is so hard, that when it isn’t you take notice somehow more profoundly. Today she was beaming for several reasons, first- she was rolling…
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That’s what friends are for ..
My husband doesn’t have paid “sick” time and only accrues paid time off by hours worked. That’s tough with a #rarekid. So some nights he works late to make up ( literally) for lost time . Tonight was such a night and my bestie Jen came to give me much needed adult company and help…
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Every step you take…
I think as of today I take walking for granted… To watch Alexia try out this adaptive device to help her walk (at least in a small space with support… ) Changed my perspective entirely. We went to the U today to be fitted for a gait trainer – that is a device that helps…
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Sometimes the turn of a tide is a good thing …
Because we have nothing else on our plate my husband and I decided to get another puppy… We have a senior dog who is nearly 12, and another young dog who is under two… We know our Senior is at the sunset of his time with us and that our new dog won’t do well…
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It’s not all wine and roses ..
I’m new to this form of social media so not really sure if the expectation is wine and roses or not 🙂 I figure generally the space is for me and whoever I choose to read it… Most days are amazing but sometimes you get a part of a day that really gives the thorn…
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The first day !
Alexia started school for the first day this week Tuesday. She was three days behind her peers due to Covid but that did not dampen her spirits. It was also her first time at school in her wheelchair. Now that walking is more difficult even with her braces, the wheelchair is essential for her movement…
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COVID (sigh..)
She had Covid … I was terrified about this for so long 😳. We avoided hospitalization ! The U of M team was ON it proactively and we listened to them and worked the “sick” protocol like champs. Paise God. Then my husband went down … he’s good now but it was TOUGH. Medical life…
Alexia’s Journey 