Category: Living with Sp Needs
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DBS: Can We Keep It?
An unplanned complication (because we never plan them, do we?) led to an unplanned surgery* with Blue’s Neurosurgeon on July 5th (without the horrible haircut this time!😉), Multiple surgeries to follow this summer (one with the same wack haircut he got last summer). We wait for a phone call…days, weeks, a month? Much on the line.…
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Touch
As we leaned over his bed and said bedtime prayers, his hand slowly drifted up, fingers open. For the first time, my boy, ever so gently, caressed my face. (Previous attempts had quite a punch behind them due to the movement disorder.) This was entirely different and sacred. Thank you Jesus for the miracles every…
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Want to go home?
We asked the kid if he wanted to go home, or no. He stared intensely at the the “NO” hand. (We hold up hands as we ask a question, so he can look at the choice he wants.) Comfy bed. Pretty nurses. Food on command. Both parents to take care of your every wish. Endless…
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A good day
The boy did great today. Still taking 3 pain meds in addition to a few other things but handling it all like a champ and seeming much more comfortable. We loved seeing a few smiles and laughs here and there, especially when his buddy Malcolm (our service puppy) came for a visit. Hoping to get…
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All done
The surgeon told us that all went well! Blue is now recovering in a room. And when this tall boy’s bed wouldn’t fit through the door? Dad was on the floor in his bunny suit before the crowd of nurses even knew what was going on. (Narrowing the frame of the bariatric bed.) Pain…
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DBS 2
It’s been one of those weeks. Twists and turns that leave you feeling a little shell shocked or gut punched or both…but not completely ignorant that you are surrounded with blessing. I still haven’t packed and can’t seem to make myself do it, so while I procrastinate into the 11th hour, I might as well…
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A Birthday?
The girls begged me to let them stay home to celebrate their brother’s birthday. I felt so wiped out. I knew I would be shooting myself in the foot to give in. I could not give in, no matter how they begged. You see, I’ve finally found a medicine that helps with my neck spasms but…
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1rst lead
The first lead(of 4) to the GPI is in. They weren’t able to wake blue sufficiently to verify placement. The imaging that they obtained on Monday is some of the best they’ve ever seen, even with the cochlear artifact, and they have good reason to expect that this will help him. Several more hours to…
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EPIC
Epic. A friend used the word today and it sounds right. Aside from a very traumatic car accident, I can’t imagine a scarier or more amazing surgery than DBS, and tomorrow this epic journey begins. Today has been a good day. Not too much pain from Monday’s stitches and we got some of these lovely…
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Creative solutions
We owe many thanks to a construction worker and nurse who found our van keys after a good bit of frustrated searching. (You know the relief of being discharged and how ready you are to get home and REST? …well it can contribute to angst over lost keys. We survived. Eventually, thankfully, prayerfully they were…
a rearranged life 