Archive for January, 2008

1/29/08

real quick cause sleep calls… mike’s shunt flow study did indeed turn out ok after much testing. it flows head to gut, case closed. and we did make the orthowhatever appt and he did beg for a quick surgery date so they gave him his way and scheduled ankle tendon release surgry for wed. feb 6. so that will be an outpatient thing and then 6 weeks with casts and then he will need to do immediate standing/balancing practice to get those heels to the floor and his feet in the right shape. that will be an astounding place to be. he will basically have no balance at first and it will be painful stretching but i believe it will finally be the kind of exercise mike will be pining for. so we couldn’t possibly have a week without multiple doctor appointments–good thing mike fixed that danger! whatever will we do for entertainment when they are tapering off for a few weeks? thanks and peace, michelle

January 30, 2008 at 12:39 am 7 comments

1/26/08

i am not really trying to avoid posting the video but i am waiting for an ok about legalities due to background music kind of stuff i am told. so when i m able i will try to pass it on for those who keep asking. sorry to just ignore the request so far… michelle

January 27, 2008 at 12:12 am 1 comment

late 1/25/08

i get so bogged down with dealing with necessities everything else seems expendable–like updates. mike’s trach is slowly healing. it is supposed to take about 2 weeks of bandaging before it closes itself up. until then it is this open hole which air can pass out of so he cannot vocalize (speak aloud) unless someone covers his neck with their hand. this seals the air inside so it can push up further in his throat past the vocal chords (sp?). he is speaking loud and clear when someone does this though i surmise it is not within everyone’s comfort level to do so because it is literally very hands-on. he also is “enjoying” a series of hospital appointments hanging out in the nuclear medicine maze as they watch this radioactive isotope they have stuck in him travel through the path of his shunt. this procedure was in response to some swelling in his brain noticed on a CT scan from the thanksgiving hospital stay. we have had 3 visits there this week and 2 more next week. we are also heading in for our consult with the orthopedic guy next week to talk about tendons and foot drop surgery and another checkup for the baclofen pump on another day. in fact, thursday is our only doctor-free day (not that we don’t appreciate our doctors–our saintly general practitioner came to the house last week to check if mike had pink eye for me just so i wouldn’t have to squeeze in an extra appointment at another office. turns out no pink eye, just sleeping with his eye open turning it red). i am constantly amazed how well our kids adjust from babysitter to babysitter, schedule to schedule, chaos to chaos. they go with the flow when i stumble, trip and curse at whoever is getting in my way. so all is good yet tiring, even without any real drama. pray for my grace, michelle

January 26, 2008 at 12:25 am 2 comments

1/16 evening

guess what! trach’s out! hurray!

January 16, 2008 at 7:00 pm 12 comments

1/15/08 late

i know it has been a ridiculously long few weeks since an update. know that silence means nothing bad (thankfully). first, a medical update. we have a few appointments in the next couple weeks. mike just finished his last appointment for the time being to increase his baclofen dose that goes through his pump in his gut. he is now close to the highest possible level. it has certainly been miraculously helpful in relieving all his painful spasms and has increased his range of motion by relaxing those tight muscles in his limbs. his left leg and right arm are still somewhat stiff and limited and the doctor has decided to augment the baclofen impact with a phenol injection into those 2 limbs. the hope is that the phenol will help loosen those stubborn spots even more than the baclofen has been able to. one unnerving variable that has accompanied the increasing baclofen over these last few months is that mike feels less able to move his arms of his own volition. according to the doctor this is not likely to be attributed to the baclofen because mike’s arms are still somewhat stiff, not overly loose like a baclofen overdose would look like. he just asks mike to continue trying to work his arms as much as possible. mike then says he can’t and we are stuck in that quandary of perspectives for the time being.
we are also checking in with an ENT doctor about the possibility about removing the trach before he ever gets close to passing a swallow test. trachs are helpful for anasthesia for surgeries, ventilators for serious illnesses and swallow tests. but maybe we can deal without the trach luxury for any such circumstances we run into. we will see what is necessary. but i am at least excited for the appointment.
and we have an appointment for another doctor to look at michael’s ankles and his foot drop and maybe go ahead with the tendon release surgery at this point finally.
those were some steps to accomplish before we look at serious rehab again so i am excited as each domino falls.

on a separate note, one meaningful experience over the last few weeks included attending a gorgeous wedding of an old high school kid we love. i was able to enjoy another amazing wedding one night when mike was not up to going out. but a few days later caught him feeling better and we were able to dress up and go on such a lovely date to celebrate and witness their own marriage’s beginning. a snowstorm and the sheer physicality of getting mike around the church broke down some of my decorum and i was a little emotional (for all those surprised or concerned about me). it was just really meaningful to be out with mike, dressed up, reliving fond memories and remembering old friends. he was not sympathetic to my weepiness telling me, “stop, crazy girl”. but that actually was helpful in grounding me a bit.
and another incredible experience was taping a video for young life to use at their every four year all staff conference in orlando last week. an incredibly talented friend set it up, got us taped, and edited so many hours of footage into a comprehensive 10 minute movie telling mike’s story. mike shares a tiny bit on the video and seeing it really impacted me. he is so limited in his ability to speak his mind and his heart. but i glimpse, sometimes, that both his mind and heart are utterly unchanged. and they are both centered on Christ. it points me back to the savior. it reminds me of our foundation.
thanks for your faithfulness, even when i have not faithfully updated.
in Christ, michelle

January 16, 2008 at 12:45 am 7 comments


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