Archive for April, 2008

4/26?/08

today is satuday and i cannot believe april is almost over.  life has been a blur.  mike’s throat “blister” seems to have healed back again and hopefully will stay that way.  our new temporary caregiver is great and really focused on the exercises they are doing at therapy.  mike is still loving therapy.  todays’s request is that he will build up a tolerance for sitting in his wheelchair.  he still uses it out of pure necessity to leave the house but does not want to stay in it at all.  so he is still bedridden for most of life.  his therapists tried to pep talk him last week to get a vision for aiming to be in it all day long.  quite an ideological adjustment in my opinon…michelle

April 26, 2008 at 12:09 pm 9 comments

april 22, 2008

so mike’s little scar on his throat started blistering/bubbling up last week after it had all sealed closed.  the ENT said that his body was trying to reopen the hole and some air was breaking through from the inside causing the bubble.  i felt like, oh brother, i though we were finally finished with this, God!  the blister has shrunk down and maybe it will not require any extra attention but i guess please pray for things even after they have been resolved.  resolved in my eyes doesn’t seem to count for much.  reminds me that my plans are not what matter.  also our caregiver, don, is in the philippines for   few weeks for his daughter’s wedding and we have a new guy, chris, in the interim.  he is very nice and is getting baptized by fire with therapy 5 times a week now (speech, occupational 3 times eekly, physical 5 times).  mike has really relinquished his obsession with the pain drugs and is virtually pain-drug free.  it is a night and day difference.  although he does seem to look for something new to pick fights about with me.  my patience is a constant prayer request.  and the most fun new improvement is that mike is starting to get a bit better at name recall.  he knows people but usually can’t get names out.  in the last few weeks he has been able to come up with a couple names after thinking about it for hours.  this week he spontaneously got mckaela and eli and was so proud of himself.  it was really fun.  thanks and praises, michelle

April 22, 2008 at 5:00 pm 4 comments

4/15/08

therapy continues to go well and we got our final checkup with the ENT on his healed trach site today.  all sealed with just a small scab still about to fall off.  HURRAY!  mike is getting a lot done with all three therapies still.  and his boots (instead of braces) do not impede them working with him at all.  they did start him on the tilt table on monday where they strap him in very much like frankenstein and then tilt him a certain number of degrees at a time as they monitor his blood pressure. he was great (no increased or dropped pressure) and got up to 50? degrees which in person seems very upright honestly.  i forgot how incredibly tall he is.  he liked the feeling of some pressure on his feet and they will try further on ensuing days.  they will also be hopefully bumping up his therapy schedule from 3 days weekly to hopefully 5 days weekly.  pray whether this is the right move and that we get to if it is good for him.  also, at least his pressure wounds are not worsening.  so that is a step in the right direction.  and we see an optometrist on thursday to check on eye function again.  i get regularly overhwelmed and annoyed and irritable and then suddenly feel blessed and provided for and joyfilled.  pray for mike as he endures the roller coaster of my moods which he can’t quite fathom since he isn’t in charge of the details of how all this is working out.  suffice it to say, despite both of our tendencies toward whining, God is showing his goodness in this race marked out for us, michelle

April 15, 2008 at 5:56 pm 4 comments

4/12/08

so when mike first got his casts off his feet were a swollen bloody scabby mess which they said was appropriate.  next day he went into the hospital for trach surgery and we didn’t pay much attention to his feet for a week and a half till we got his braces fitted.  we thought the braces would replace the 1/2 cast we were wrapping onto his feet to maintain the new position the surgery had made possible for his feet.  but the brace people were worried about the bloody scabby heels.  we continued cleaning his feet and the scabs washed off revealing some pressure sores worsening on his heels and sides of his feet just in time to start therapy this week and have them panic over the damaging pressure wounds.  so we debated over what should get priority–maintaining the shape of his feet by bracing or wrap-casting him or freeing his feet and simply putting these old boots he used to wear before the casting in february which prevent sores.  the sores are getting priority so he is now in these boots which i worry a bit about.  please pray that the sores would begin to heal and we would not lose the appropriate range of motion which the surgery had corrected.  and for my sanity in troubleshooting with so much conflicting advice and mike’s perpetual whining.  he wants bare feet for comfort which is far from his best interest.  other than that distraction therapy is still a welcome adventure and we are so grateful for it.  thanks, michelle

April 12, 2008 at 5:32 pm 5 comments

almost tuesday 3/8/08

mike did make it through his first day back in therapy.  he met his 3 new therapists and mostly we just went through preliminary evaluations of his history and how he is doing right now.  we began to set goals in each area and checked on some pressure wounds forming on his heels.  the physical therapy assessment gathered that he does not yet have enough leg strength to put weight on his legs so we will still wait on that chance for standing but that is still the goal.  another exciting goal is to get some functional gain in his eyesight.  his eyes have not aligned themselves and so he has endured double vision.  we hope to get some new direction on addressing that frustration.  he will work on various other goals as well but those stuck out.  they did lay him on a bed/table so he did not have to endure the wheelchair the whole time and he expressed his undying love to the therapists who made that possible.  specifically he said that it was amazing and he wanted to come back every day (just to lay on the table).  it is a seriously exciting new place to be in mike’s growth.  and he did ask every new therapist if they had ever heard of young life.  he was trying to find new leaders.  made me laugh on a long day.  thanks for dinners and prayer, michelle

April 7, 2008 at 11:56 pm 4 comments

april 5, 2008

sorry to be late on the update…

mike got his stitches and rubber band in his trach area removed.  the rubber band left a small hole to heal.  so we will again wait for a hole to heal although it is a much tinier one this time.  and he is talking really well even with the tiny hole.  although he still mostly speaks softly though when motivated he is capable of being louder.

and we picked up his new leg braces on friday and shoe shopped for overgrown shoes to fit over them today and he starts outpatient therapy at marianjoy on monday!  he will go in for three hours at a time three days a week to work on physical (legs/standing), occupational (arms, hands…) and speech (and swallowing) therapy.

please pray that mike would handle and adjust to an appropriate amount of pain.  we have struggled for more than a month with his preference to avoid all pain, occasionally even before it starts.  his approach doesn’t quite coincide with doctor orders to wean off narcotics, switch to over the counter and take as needed instead of around the clock.  i believe much of his pain is anxiety based as well as physical.  he also complains when he is in the wheelchair for an extended time.  i am afraid that such complaints might become obstacles to him or his therapists understanding his capabilities.  i do not want a minute of therapy squandered on something he can suck up.  i am afraid his therapists will be more sympathetic than i am and will pause too often to attempt to pacify him.  since i know by experience there is no pacifying him i don’t want them to waste time on it.  (i also know through long months what real pain looks like for him so i am trying to get him to gain some perspective).  so we have built quite a rift in our differences on the subject of pain treatment. 

also, he has started some insomnia which i am fairly sure should settle into normalcy.  but he is currently tortured by it.  i am slightly tortured as well since he occasionally calls me out of bed at 3, 3:15, 3:30 for no good reason.

so all is exciting and complicated.  thanks for lifting us up… michelle

April 5, 2008 at 6:11 pm 7 comments


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