This morning I received this email message from Dr Weiss, "I went back and looked at the EMG study again. There is clearly evidence to support the idea that this is more definitively ALS, with involvement on the needle testing of muscles in the arms and trunk, and not just progressive bulbar palsy." It really doesn't change anything but it was good to know that the doctor was being thorough.
Today has been a good day. Tom was in great humor this morning and we had fun kidding around. He has better speech today. The new dosage on his meds seems to be doing its job. YEAH! Went to the dentist today AND Tom got a haircut. I almost got a pedicure but the wait was longer than I was willing to give. Tonight we are with our home fellowship group--something we always look forward to. Tomorrow our grandson Maximus (the Moose) is coming to play. Appreciating this pocket of joy--kind of like being in the eye of the storm--I understand it's very quiet there and peaceful. Just enjoying it.
"Attitude is the mind's paintbrush; it can color any situation. For every minute you are angry, sad, or anxious you lose sixty entire seconds of happiness. Between yesterday's regret and tomorrow's dream lies today's opportunity. Use it." from Barbara Johnson's Boomerang Joy
Thursday, May 7, 2009
Wednesday, May 6, 2009
Diagnosis is in
We're back from the UW visit. Dr Weiss confirmed that it is not any of the obscure diseases that he was testing for. He said the diagnosis is progressive bulbar palsey which some say is connected with ALS, others disagree. Dr Weiss believes that it will progress into ALS. Right now the only part of Tom that is affected is his speech and swallowing. He did give us a plan for attacking the saliva management and we will try plan A for 2 weeks, followed by plan B if necessary and if those don't work we will go straight to Botox--which apparently greatly reduces the amount of saliva the body produces.
Next Tuesday we will meet with Nurse Cathy who will give us more instruction on the disease and help us with strategies for dealing with what we need to deal with. We're also being transferred to the UW speech therapy. We've had the most wonderful speech therapist at Evergreen and will hate leaving her but apparently they have more high tech stuff to help Tom with speech so that is a good thing.
Tom is starting to grasp that this is not something that will get better UNLESS God sends a miracle which He's perfectly capable of doing. We just want His will in our lives and if this is what He is allowing us to go through then we are dependent on Him to help us navigate it. It's hard for me to know how hard this is for our children--they love their dad so much and are so supportive. I am very thankful that we are a close knit family and know that we will grow even closer (if that's possible) through this. There are so many unknowns out there so once again we just have to stay focused on today and what we can do to make it the very best for Tom we can.
The doctor's visit was not as hard as I thought it was going to be. I guess we've been hearing the term ALS for a couple of months now so it wasn't something new. The doctor was very gentle and we appreciated the way he kept bringing Tom into the conversation (Kemp really noticed that). It was helpful to have Kylisa and Kemp with us. What a precious gift family is!
Next Tuesday we will meet with Nurse Cathy who will give us more instruction on the disease and help us with strategies for dealing with what we need to deal with. We're also being transferred to the UW speech therapy. We've had the most wonderful speech therapist at Evergreen and will hate leaving her but apparently they have more high tech stuff to help Tom with speech so that is a good thing.
Tom is starting to grasp that this is not something that will get better UNLESS God sends a miracle which He's perfectly capable of doing. We just want His will in our lives and if this is what He is allowing us to go through then we are dependent on Him to help us navigate it. It's hard for me to know how hard this is for our children--they love their dad so much and are so supportive. I am very thankful that we are a close knit family and know that we will grow even closer (if that's possible) through this. There are so many unknowns out there so once again we just have to stay focused on today and what we can do to make it the very best for Tom we can.
The doctor's visit was not as hard as I thought it was going to be. I guess we've been hearing the term ALS for a couple of months now so it wasn't something new. The doctor was very gentle and we appreciated the way he kept bringing Tom into the conversation (Kemp really noticed that). It was helpful to have Kylisa and Kemp with us. What a precious gift family is!
UW appointment
It's Wednesday--a day that seemed so far away but here it is. We both had a good night last night--slept well. The feeding pump alarm beeped at 6:45 to say that the overnight feeding was done. It's the best alarm--we CAN'T ignore it. We are up and ready to go with our list of questions for Dr. Weiss. I remember when we thought we were going to have to wait until August to get an appointment at the UW. It's with mixed feelings that we go to this appointment--we need to know what we're dealing with and how to deal with it but at the same time. . .
Back to Proverbs 3:5-6
Trust in the Lord with all of your heart and lean not on your own understanding. In all your ways acknowledge Him and He will direct your paths.
Please, Lord, give us an extra amount of trust, strength and courage for this day.
We are thankful for Kemp and Kylisa coming with us today AND for Kirstin taking care of her nephews!
Comments posted are more boomerangs of joy! Thank you!!!
Back to Proverbs 3:5-6
Trust in the Lord with all of your heart and lean not on your own understanding. In all your ways acknowledge Him and He will direct your paths.
Please, Lord, give us an extra amount of trust, strength and courage for this day.
We are thankful for Kemp and Kylisa coming with us today AND for Kirstin taking care of her nephews!
Comments posted are more boomerangs of joy! Thank you!!!
Monday, May 4, 2009
It's hard
Life is hard. We were never told otherwise. It was hard last night when I drove myself to the church annual meeting (if it happens twice a year, is it still "annual"???) last night alone--Tom and I have always gone together. It's hard watching Tom in a group of people like at church yesterday and knowing how much he wants to communicate but talking is so difficult. It's hard going to see Jen, the speech therapist, and Tom not reaching out to hug her--but she had a hug for him. He was feeling frustrated and didn't know what she could do to help. It's hard when I don't know what to do to help and think, what if Tom stops smiling at me?! It's hard to feel tired when I think I've gotten enough sleep. It's hard not being able to babysit our grandboys because the noise is hard for Tom or they are being protective of Tom's health. It's hard not going to Hunter's lacrosse games because it's just too hard for Tom. It's hard eating a meal by myself. It's hard to remember all the times I complained inwardly about having to fix another dinner--I'd give anything to fix a favorite dinner of Tom's now. It's hard to think about going to see the UW doctor on Wednesday--wondering how I can protect Tom. It's hard knowing how much life has changed.
It's hard but it is life. How often I have thought about "getting through" things and then on to life as I want it to be as thought the "getting through" part isn't really a part of life. It's all a part of life--the easy and fun and the hard. What's amazing is that it takes the hard times to mold us and shape us--we grow the most in the hard times and God is definitely closer and more depended on in those times when we are the weakest. I feel like the last few weeks I have been in a cocoon, wrapped up and protected from feeling too much while God has let me know how loved and cared for we are. Today and last night I feel like I'm starting to come out of that cocoon. Butterflies stuggle as they get ready to fly, it's hard work, it's just plain hard. But that's they way God planned their life. He doesn't give them more than they can handle and He makes that promise to us. Life is hard but He's here in the midst of it and with Him we will make it.
Heard the end of an interview on the radio today. They were talking about motherhood being a calling, a responsibility and a privilege. You know, that can be said for many things in life--being a wife is a calling, a responsibility (to the commitment we made), and a privilege. What a privilege to be able to care for a man who has cared for me all these years--really a very special intimacy of trust as well as love. "They" say "love is a decision" and I agree--many times over the years that's what it's had to be but it sure is wonderful when the decision and the emotion come together and are one!
Tom just beat me at cribbage TWICE! How does he get those cards?! We "bump" hands to congratulate the winner. AND he's smiling tonight! How I wish I could collect each one and save them!
We pray for strength in the midst of our weakness. We pray for courage to face each new day. We pray we might be a blessing to all we meet. I pray I could be the wife Tom not only needs but the one he wants as well.
Finished this entry and then read this devotion which comes via email--sure seems to answer what I am feeling today.
BIBLE MEDITATION:"My brothers, count it all joy when you fall into divers temptations." James 1:2
DEVOTIONAL THOUGHT:Sometimes we have to admit that it's hard to "count it all joy." Sometimes we complain, and rather than being humbly grateful, we get grumbly hateful. Oh, how I wish that, beginning today, we would emulate the faith of the saints that have gone before us - saints like Fannie Crosby, the great hymn writer. For most of her life Fannie Crosby was blind, and yet at the tender age of eight, Fannie wrote:
"Oh! What a happy soul am I. Although I cannot see,
I am resolved that in this world, contented I will be.
How many blessings I enjoy that other people don't.
To weep and sigh because I'm blind, I cannot and I won't." And do you know what? She didn't.
It's hard but it is life. How often I have thought about "getting through" things and then on to life as I want it to be as thought the "getting through" part isn't really a part of life. It's all a part of life--the easy and fun and the hard. What's amazing is that it takes the hard times to mold us and shape us--we grow the most in the hard times and God is definitely closer and more depended on in those times when we are the weakest. I feel like the last few weeks I have been in a cocoon, wrapped up and protected from feeling too much while God has let me know how loved and cared for we are. Today and last night I feel like I'm starting to come out of that cocoon. Butterflies stuggle as they get ready to fly, it's hard work, it's just plain hard. But that's they way God planned their life. He doesn't give them more than they can handle and He makes that promise to us. Life is hard but He's here in the midst of it and with Him we will make it.
Heard the end of an interview on the radio today. They were talking about motherhood being a calling, a responsibility and a privilege. You know, that can be said for many things in life--being a wife is a calling, a responsibility (to the commitment we made), and a privilege. What a privilege to be able to care for a man who has cared for me all these years--really a very special intimacy of trust as well as love. "They" say "love is a decision" and I agree--many times over the years that's what it's had to be but it sure is wonderful when the decision and the emotion come together and are one!
Tom just beat me at cribbage TWICE! How does he get those cards?! We "bump" hands to congratulate the winner. AND he's smiling tonight! How I wish I could collect each one and save them!
We pray for strength in the midst of our weakness. We pray for courage to face each new day. We pray we might be a blessing to all we meet. I pray I could be the wife Tom not only needs but the one he wants as well.
Finished this entry and then read this devotion which comes via email--sure seems to answer what I am feeling today.
BIBLE MEDITATION:"My brothers, count it all joy when you fall into divers temptations." James 1:2
DEVOTIONAL THOUGHT:Sometimes we have to admit that it's hard to "count it all joy." Sometimes we complain, and rather than being humbly grateful, we get grumbly hateful. Oh, how I wish that, beginning today, we would emulate the faith of the saints that have gone before us - saints like Fannie Crosby, the great hymn writer. For most of her life Fannie Crosby was blind, and yet at the tender age of eight, Fannie wrote:
"Oh! What a happy soul am I. Although I cannot see,
I am resolved that in this world, contented I will be.
How many blessings I enjoy that other people don't.
To weep and sigh because I'm blind, I cannot and I won't." And do you know what? She didn't.
Saturday, May 2, 2009
Liveable
I think these two would have liked each other--
Winston Churchill said, "Attitude is a little thing that makes a big difference."
Erma Bombeck said, "If you can laugh at it, you can live with it."
Today the laughable word is "liveable"--that was Tom's response when I asked how the saliva was. We both laughed and said OK.
We play a game each meal time. I ask him what he wants and he comes up with some old favorite. Today when he couldn't get the words I brought out one of those little Doodle things--it worked great--amazing how much one word can convey. Today lunch was a coldcut sandwich from Subway--what a compliment for Subway when he could have had anything in the world he wanted. The other thing that he does is always say, "Takk for mat" when I feed him. That's an old family tradition--it means, "thank you for the food" in Swedish.
Winston Churchill said, "Attitude is a little thing that makes a big difference."
Erma Bombeck said, "If you can laugh at it, you can live with it."
Today the laughable word is "liveable"--that was Tom's response when I asked how the saliva was. We both laughed and said OK.
We play a game each meal time. I ask him what he wants and he comes up with some old favorite. Today when he couldn't get the words I brought out one of those little Doodle things--it worked great--amazing how much one word can convey. Today lunch was a coldcut sandwich from Subway--what a compliment for Subway when he could have had anything in the world he wanted. The other thing that he does is always say, "Takk for mat" when I feed him. That's an old family tradition--it means, "thank you for the food" in Swedish.
Cloudy Saturday
It's Saturday--the first Saturday of the month which means it is men's breakfast at church--and Tom's not there. The breakfast has been such a big part of his life ever since coming to Bear Creek. One of Tom's greatest gifts has been his ability to talk to anyone, anywhere about most anything. I've always admired that in him. It's hard seeing that being taken away from him. No food by mouth, not much speech and what is there this morning is very uncomfortable means he is not feeling up to the breakfast. It makes me very sad to see him lose this.
Woke up this morning feeling very physically tired so I think it will be a very quiet day with lots of rest thrown in. Am drinking tea from my favorite cup and saucer. No grandson coming to visit this morning--garage sale cancelled due to rain--timing is probably good though I will miss seeing him.
Here's a thought--wouldn't it be fun to open the snail mail box, email or on this blog and see thoughts that people have about Tom--memories, impressions, funny stories? I think Tom would like it.
Woke up this morning feeling very physically tired so I think it will be a very quiet day with lots of rest thrown in. Am drinking tea from my favorite cup and saucer. No grandson coming to visit this morning--garage sale cancelled due to rain--timing is probably good though I will miss seeing him.
Here's a thought--wouldn't it be fun to open the snail mail box, email or on this blog and see thoughts that people have about Tom--memories, impressions, funny stories? I think Tom would like it.
Friday, May 1, 2009
It's Friday but Sunday is comin'
What is the difference between Outlook, Internet and Internet Explorer. I am so confused. I just updated Outlook with addresses and emails but then couldn't use it to send out emails so added them to the internet site but then I go to Internet Explorer to get on this blog. What am I missing?!
Things like feeding and sleeping have been going smooth for the last two days--YEAH! But Tom is still having a great deal of difficulty managing his saliva because the muscles in his esophagus are weak. We've tried drying it up but that doesn't feel good if it gets too dry. We're trying something new--thinning it out with Robitussen. Again, it's a trial and error process. The hardest part is that Tom doesn't like to speak when he's having this problem. This morning he woke up with a stronger voice than he's had in days--it was so good to hear him talk. Hopefully we can get it worked out.
We took a drive in the sun today--it was such a beautiful day. We were headed to Snoqualmie Falls but made it as far as Redmond. That town is sure changing. I grew up in Redmond and I remember seeing the population sign by the side of the road that read 1500! I remember when there was only one apartment building in town. I remember the Chamber of Commerce being concerned about how to get more pedestrian traffic in town. We drove by the two houses we lived in--good memories from both.
Last night I laid awake for awhile thinking and talking to God. One of my questions to Him was how I could be feeling so at peace in the midst of this storm--at least for today, I'm only taking it one day (or less) at a time. He gave me a visual picture (this isn't the first time--guess I must be a visual learner)--the picture was of a ball that someone was trying to force under water. Everytime they tried it popped back up to the surface. I'm that ball--that's exactly the way it feels. Can't explain it. Can't understand it. (Greater is He that in me!) Just know that I am very thankful for His grace and peace in my life for today. I've said it before but I'll say it again--don't want to waste any of this time that Tom and I have together whatever the future holds.
Can't imagine going through illness/hard times without having Jesus with me. I remember when Tom had open heart surgery back in 2002. I was going to kiss him goodbye not knowing what the day would bring. Wondering what to say I heard these words come out of my mouth--"you love Jesus, I love Jesus, Jesus loves us--we're going to be okay."
That brings up another memory--when Tom was coming out of the anesthesia he was kind of in and out. I asked him how he felt. He said he felt like he was going up and down. I said, like a see-saw? He said yes and that there was a pretty girl on the other end. He had a very cute nurse and I asked him if that's who he meant. He said, 'No, it's Cathy!" Under drugs and everything! Boy, did he earn big points that day!
Another visual that God gave me years ago (now I'm on a roll!) was when I left the church after my first Sunday "on the job". I was crying because I realized it was so much bigger than I imagined and I didn't think I was up to the task. God gave me a visual of Him reaching down with His right hand to take my hand and giving me the assurance that He would never let go. He's kept that promise!
Tomorrow morning our youngest grandson, Grayson (just turned 1) is coming over to hang out for while. Looking forward to playing 1 year old games! With that in mind I had better close and get to bed. One more medication for Tom and then we're done for the night.
Things like feeding and sleeping have been going smooth for the last two days--YEAH! But Tom is still having a great deal of difficulty managing his saliva because the muscles in his esophagus are weak. We've tried drying it up but that doesn't feel good if it gets too dry. We're trying something new--thinning it out with Robitussen. Again, it's a trial and error process. The hardest part is that Tom doesn't like to speak when he's having this problem. This morning he woke up with a stronger voice than he's had in days--it was so good to hear him talk. Hopefully we can get it worked out.
We took a drive in the sun today--it was such a beautiful day. We were headed to Snoqualmie Falls but made it as far as Redmond. That town is sure changing. I grew up in Redmond and I remember seeing the population sign by the side of the road that read 1500! I remember when there was only one apartment building in town. I remember the Chamber of Commerce being concerned about how to get more pedestrian traffic in town. We drove by the two houses we lived in--good memories from both.
Last night I laid awake for awhile thinking and talking to God. One of my questions to Him was how I could be feeling so at peace in the midst of this storm--at least for today, I'm only taking it one day (or less) at a time. He gave me a visual picture (this isn't the first time--guess I must be a visual learner)--the picture was of a ball that someone was trying to force under water. Everytime they tried it popped back up to the surface. I'm that ball--that's exactly the way it feels. Can't explain it. Can't understand it. (Greater is He that in me!) Just know that I am very thankful for His grace and peace in my life for today. I've said it before but I'll say it again--don't want to waste any of this time that Tom and I have together whatever the future holds.
Can't imagine going through illness/hard times without having Jesus with me. I remember when Tom had open heart surgery back in 2002. I was going to kiss him goodbye not knowing what the day would bring. Wondering what to say I heard these words come out of my mouth--"you love Jesus, I love Jesus, Jesus loves us--we're going to be okay."
That brings up another memory--when Tom was coming out of the anesthesia he was kind of in and out. I asked him how he felt. He said he felt like he was going up and down. I said, like a see-saw? He said yes and that there was a pretty girl on the other end. He had a very cute nurse and I asked him if that's who he meant. He said, 'No, it's Cathy!" Under drugs and everything! Boy, did he earn big points that day!
Another visual that God gave me years ago (now I'm on a roll!) was when I left the church after my first Sunday "on the job". I was crying because I realized it was so much bigger than I imagined and I didn't think I was up to the task. God gave me a visual of Him reaching down with His right hand to take my hand and giving me the assurance that He would never let go. He's kept that promise!
Tomorrow morning our youngest grandson, Grayson (just turned 1) is coming over to hang out for while. Looking forward to playing 1 year old games! With that in mind I had better close and get to bed. One more medication for Tom and then we're done for the night.
Subscribe to:
Posts (Atom)
