I have mentioned that the past couple of weeks have been a challenge....Christopher started feeling better last night...and this morning Amy woke up sick as a dog. So, I'm trying to do what little I can for her (at least when she gets sick she knows to head to the BATHROOM) and entertain Christopher. My friends are all otherwise committed.... work (most of them) ... and my poor friend Julia had her second surgery (2 in 7 days) last week and Sharyll's husband is still injured and needing help from his car crash last week. Thankfully, Janie brought us some groceries yesterday (THANK YOU, JANIE!) and Sharyll is going to try to get Fred settled for a while and come over...long enough to at least help get the laundry and dishes caught up.
So far, Christopher is being super good....we are laying in my bed watching "Sprout TV". I am grateful for every minute he cooperates!
Poor Amy is miserable. Hopefully the motrin and phenergan suppository will help her rest and ride this out.
Please pray I don't catch the bug. I've been a maniac with antibacterial wipes and alcohol hand gel, but there's only so much you can do in a small house with sick people nearby.....
The good news is that I CAN still walk, and get to the bathroom by myself, and feed myself. I don't know how God's going to fill in the gaps when I get to the point where I can't take care of myself at all... let alone Christopher and Amy. It is scary for me.
If you have ALS and you have a family caregiver, consider how blessed you are....what's more, if you have a family caregiver who allows your spouse to work and maintain a relatively "normal" family life (kid's ball games, shopping, work, eating out) you should consider how much MORE blessed you are!
Love, Claudia
Monday, April 14, 2008
Saturday, April 12, 2008
Life's Challenges
Exhausting. That pretty much sums up the past 2 weeks. Since my last post, we've had several appointments and outings. I love getting out and seeing things besides the walls inside my not-so-huge house, but I pay the price. It is frustrating.
And Christopher is sick. He has a stomach virus. It reminds me of the 'bad old days' when he was in school and sick ALL the time. He had perked up a little this afternoon but still didn't feel well (this morning he was so weak I was worried). It is so hard for me to not be able to be the hands-on mom and to watch Amy take care of him (she does such a wonderful job, but I feel so helpless to help him). At least he let me lay down with him for a while this afternoon and rub his back. Here's his pitiful self about 5 PM today, trying SO hard not to cry and to be a 'big boy'. He'll always be my baby, though:
He's still got a fever and dry heaves....but we're managing to keep ahead of dehydration with tiny sips of water. Just pray that neither Amy nor I get the bug (oh bad!).
Love, Claudia
And Christopher is sick. He has a stomach virus. It reminds me of the 'bad old days' when he was in school and sick ALL the time. He had perked up a little this afternoon but still didn't feel well (this morning he was so weak I was worried). It is so hard for me to not be able to be the hands-on mom and to watch Amy take care of him (she does such a wonderful job, but I feel so helpless to help him). At least he let me lay down with him for a while this afternoon and rub his back. Here's his pitiful self about 5 PM today, trying SO hard not to cry and to be a 'big boy'. He'll always be my baby, though:
He's still got a fever and dry heaves....but we're managing to keep ahead of dehydration with tiny sips of water. Just pray that neither Amy nor I get the bug (oh bad!).
Love, Claudia
Monday, April 7, 2008
Big Day
It was been a beautiful weekend and I've been frustrated by my limitations. My strength, stamina and balance are definitely worse than last fall. I tried to do some simple things outside but found myself so short of breath that I could only speak in two-word phrases and literally collapsing into bed exhausted from picking up a few dried leaves!
Today was beautiful too... probably the prettiest day of the three (warmer and sunny) but I spent it at I.U. Hospital seeing my neurologist and getting some pulmonary function tests. Now, I just want you to know that I have the coolest neruologist on the planet. He is awesome (and has been from 'day one' -- even though that day he told me I had ALS and not Myasthenia Gravis...which would have been my preference, had I been able to choose). Today's visit was no exception. He always displays great respect for my thoughts and has a great sense of humor.
After a discussion with Dr. P about my pulmonary function being affected by positon (sitting, laying down) a crack was made (I won't say by WHOM) about how function would be affected by being inverted...which led to a conversation about Stephen Hawking taking a ride on the "Vomit Comet"...the NASA aircraft that flys in a way that simulates weighlessness.
On my way out of the office, I was handed my obligaory stack of prescriptions. On top was this one:
Today was beautiful too... probably the prettiest day of the three (warmer and sunny) but I spent it at I.U. Hospital seeing my neurologist and getting some pulmonary function tests. Now, I just want you to know that I have the coolest neruologist on the planet. He is awesome (and has been from 'day one' -- even though that day he told me I had ALS and not Myasthenia Gravis...which would have been my preference, had I been able to choose). Today's visit was no exception. He always displays great respect for my thoughts and has a great sense of humor.
After a discussion with Dr. P about my pulmonary function being affected by positon (sitting, laying down) a crack was made (I won't say by WHOM) about how function would be affected by being inverted...which led to a conversation about Stephen Hawking taking a ride on the "Vomit Comet"...the NASA aircraft that flys in a way that simulates weighlessness.
On my way out of the office, I was handed my obligaory stack of prescriptions. On top was this one:
Not ONE but TWO trips!!! THAT'S what I'm talkin' about! He cracks me up!
Now, the drama: While we were at the doctor's office my friend, Sharyll, got a call that her husband had been in a serious motor vehicle collision. We later learned that the driver of one of the OTHER two vehicles involved (a total of three were involved) was killed. Sharyll's husband is going to be fine, and they are very blessed....in spite of totalling their vehicle.
And, tonight, after I got home I had an infamous "first"... my first PUBLIC fall. No blood, no foul, but I'm gonna have some bruises. I never even got a look at the gentleman who helped Amy pick me up.....
Lots of love,
Claudia
Tuesday, April 1, 2008
Wednesday, March 19, 2008
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