Phew! It's a lot of work getting ready to go on vacation. Tomorrow we leave for Seaside, Oregon for a week. We are both looking forward to it. Tom is especially animated over it. It will be great having Hunter with us--he will keep us very entertained with all his antics! We'll also have some Sorry tournaments and maybe even teach him cribbage.
Sunday was very special. Our children gave Tom a porch swing and had it all set up at Kirstin's when we arrived. He loved sitting in it. He wrote to his friend on email that he was going to enjoy watching the neighborhood from it when we move in. I can't wait to sit and read to grandboys while we swing--if Tom will share. He also got his Viking hat--see pictures! I always enjoy hearing from him when we leave after being with our family and hearing how much he loves them and loves being with them.
Monday Tom was especially talkative with his white board. One thing he shared was that he had had a nightmare the night before about the surgical procedure that has been proposed to separate his wind pipe and esophagus. He said he did not want to have it done and he didn't even want to go to the doctor's appointment to hear more about it. His words were, "I want there to be some of me left." I really understood what he was saying and I was so happy to hear him taking charge. It's like he's come out of this fog--I think it's the fog of denial that set in with hearing the diagnosis. He's much clearer thinking. I can even see it in his eyes. Today he asked about the medications I am giving him. Up until now he has just sat back and let me make the decisions--and that's been hard because it's HIS life but he just hasn't wanted to talk about it. Today he made some decisions about the medications he is taking and I'm sure it must have felt good to do that.
Today he drove himself to the barber and then stopped by our bank. This is the bank where Tom would often stop by just to have a cup of coffee and chat with "his girls." When he walked in he said that he was surrounded by "his girls" who gave him hugs and told him how much they have missed seeing him. They had sent him a card that had been returned to them because of a wrong address so they gave him the card in person. Here are a few of the comments: "I miss seeing your smile and kind personality and our 'Christian talks'." "Sure miss our visits over coffee at the bank and your wonderful smile." "Tom, you are a person who has brightened our day with just stoping by." "Thank you for blessing our branch with your smile and spirit when you came in to have coffee."
What a boomerang joy! Tom has blessed them with his smile, his kind words and his presence. They have blessed him with their hugs and words of encouragement and love. Today is a memory Tom will long treasure the memory of today.
It's amazing the affect Tom's bright spirit and "take charge" attitude is having on me. I feel SO ALIVE and filled with joy. There are times when it feels heavy, like carrying a weight but not right now. I feel light and can't think of any other way to say it other than ALIVE. And, oh, so in love with Tom!
Tuesday, June 23, 2009
Thursday, June 18, 2009
Ordinary and simple living
Ordinary day. Simple living. These are good. We're in an interesting place right now. We've learned to accept the changes to Tom's body and the impact they have had on our lives. We're in a routine with the feedings. Tom is using the small white board often to "talk". We're looking forward to the "talk box" being delivered--hopefully soon. Tom continues to enjoy putting puzzles together. Today 2 "old" friends stopped by for a 3 way cribbage game. Tom won all three games! The man gets amazing cards--and knows what to do with them.
With any spare time I am sorting out and getting ready for our move to Seattle. Even in such a small space as our apartment it's amazing how much STUFF there is. It's a good process--freeing.
A good thought for the day:
God doesn't change me to love me.
God loves me to change me.
With any spare time I am sorting out and getting ready for our move to Seattle. Even in such a small space as our apartment it's amazing how much STUFF there is. It's a good process--freeing.
A good thought for the day:
God doesn't change me to love me.
God loves me to change me.
Monday, June 15, 2009
Not the day we expected
This was not what we had planned for today! This morning while giving Tom his meds through his feeding tube the tube got blocked. While trying to unblock it the tube sprung a bubble in an apparent weak spot. Back to finding out who would handle a tube problem--call #4 said we should go to emergency which we did. Arrived about 9:30. The doctor couldn't get it unblocked either so he sent Tom to radiology which put the tube in and they replaced the whole tube. It was very painful because Tom is just getting over an infection at the tube site--OUCH! We finally got home at 4:00. A long day but it's good that Tom's tube will be in good shape when we take off for a few days next week!
Had a great time camping with our RV friends/home fellowship group at Thunderbird--a camp ground near Monroe. It was nice not to have to drive too far but still get away and enjoy some RV time. The hard part is that when we get together much of our time is spent talking and eating--the two activities that are the most difficult for Tom. He was glad we went and it was a good practice run before we take off on our own for the Oregon coast. It's just so hard to know how much he wants to interact but it's so much work. Hoping the "talk box" will help AND that it comes soon. We're excited that our grandson Hunter is going to go to Oregon with us AND that our friends, George, Robin and Gabby will join us there.
One of the most memorable moments for me this weekend was the time I spent opening my Bible. There was a bookmark in it that I remember seeing in the past but don't remember reading it. What I read was so right on for where we are right now. And then to top it off, it was stuck in at Psalm 143 and when I read THAT Psalm I knew I had found exactly what I need for this time in life. I made some notes that I want to keep, thoughts that struck me as I read these words of David from so long ago. I don't want to forget how God spoke to me and encouraged me. The words in blue are my words in response to the words from the Bible.
1 Hear my prayer, O Lord; listen to my plea! Answer me because you are faithful and righteous.
Thank you for the assurance that you do listen and will hear me when I come to you. You are faithful at all times--even when I don't understand.
2 Don't bring your servant to trial! Compared to you, no one is perfect.
I DON'T LIKE THIS!!!! I know I am not up to this trial in my own power. I'm so full of imperfection next to your perfection.
3 My enemy has chased me. He has knocked me to the ground. He forces me to live in darkness like those in the grave.
ALS, FEAR, ANXIETY, IMPATIENCE are my enemies.
4 I am losing all hope; I am paralyzed with fear.
The paralyzing anxiety I felt in the grocery store when even deciding on what to get for lunch was totally overwhelming. The memory of wanting to scream as loud as I could haunts me. The times it feels like I have been punched in the stomach and it's hard to catch my breath.
5 I remember the days of old. I ponder all your great works. I think about what you have done.
I remember all the times you've shown up in my life, all the ways you have worked in the past. Thank you that we have those times TOGETHER--they bring assurance of how You work and how much you care.
6 I reach out for you. I thirst for you as parched land thirsts for rain.
As never before, I hunger and thirst for YOU in the midst of this trial. In "easy" times it's easy to go my own way. In the "hard" times it's hard to stay away from You.
7 Come quickly, LORD, and answer me, for my depression deepens. Don't turn away from me, or I will die.
Without YOU all hope would die. What do people do who don't have YOU--where do they go, who do they lean on? I don't ever want to experience the absence of YOU in my life. You are my only hope.
8 Let me hear of your unfailing love to me in the morning, for I am trusting you. Show me where to walk, for I have come to you in prayer.
Your love and mercy ARE new every morning. Yesterday is a memory and a reminder of your faithfulness. Tomorrow is a hope. Today I experience YOU and it's new every morning. Give me the strengh for THIS day. Help me to trust you THIS day. Help my unbelief when it shows up THIS day. Give me your direction and guidance and then help me to trust and obey THIS day. Tomorrow I'll ask you again!
9 Save me from my enemies, LORD; I run to you to hide me.
Bury me in your arms--the only place of total peace and protection--what an incredibly comforting picture.
10 Teach me to do your will, for you are my God. May your gracious Spirit lead me forward on a firm footing.
In Your will is where I long to live. Your gracious Spirit is full of patience so when it takes many tries to "get it," keep after me. Help me to stay on firm footing--to stay on the Rock.
11 For the glory of your name, O LORD, save me. In your righteousness, bring me out of this distress.
Yours is the glory--may all the honor be Yours for what You are doing. May You shine thru my life and show others Your love, care and faithfulness.
12 In your unfailing love, cut off all my enemies and destroy all my foes, for I am your servant.
The enemies of fear and anxiety, of ALS robbing me of my husband. In the midst of all that there is YOU.
This is what is written on the bookmark:
"Be at peace. Do not fear the changes of life. Rather look to them with full hope as they arise. God, whose very own you are, will deliver you out of them. he has kept you hitherto, and He will lead you safely through all things; and when you cannot stand it, God will bury you in His arms. Do not be afraid of what may happen tomorrow; the same everlastingFather who cares for you today will take care of you then and everyday. He will either shield you from suffering, or will give you unfailing strength to bear it. Be at peace and put aside all anxious thoughts and imaginations." (St. Francis de Sales)
Had a great time camping with our RV friends/home fellowship group at Thunderbird--a camp ground near Monroe. It was nice not to have to drive too far but still get away and enjoy some RV time. The hard part is that when we get together much of our time is spent talking and eating--the two activities that are the most difficult for Tom. He was glad we went and it was a good practice run before we take off on our own for the Oregon coast. It's just so hard to know how much he wants to interact but it's so much work. Hoping the "talk box" will help AND that it comes soon. We're excited that our grandson Hunter is going to go to Oregon with us AND that our friends, George, Robin and Gabby will join us there.
One of the most memorable moments for me this weekend was the time I spent opening my Bible. There was a bookmark in it that I remember seeing in the past but don't remember reading it. What I read was so right on for where we are right now. And then to top it off, it was stuck in at Psalm 143 and when I read THAT Psalm I knew I had found exactly what I need for this time in life. I made some notes that I want to keep, thoughts that struck me as I read these words of David from so long ago. I don't want to forget how God spoke to me and encouraged me. The words in blue are my words in response to the words from the Bible.
1 Hear my prayer, O Lord; listen to my plea! Answer me because you are faithful and righteous.
Thank you for the assurance that you do listen and will hear me when I come to you. You are faithful at all times--even when I don't understand.
2 Don't bring your servant to trial! Compared to you, no one is perfect.
I DON'T LIKE THIS!!!! I know I am not up to this trial in my own power. I'm so full of imperfection next to your perfection.
3 My enemy has chased me. He has knocked me to the ground. He forces me to live in darkness like those in the grave.
ALS, FEAR, ANXIETY, IMPATIENCE are my enemies.
4 I am losing all hope; I am paralyzed with fear.
The paralyzing anxiety I felt in the grocery store when even deciding on what to get for lunch was totally overwhelming. The memory of wanting to scream as loud as I could haunts me. The times it feels like I have been punched in the stomach and it's hard to catch my breath.
5 I remember the days of old. I ponder all your great works. I think about what you have done.
I remember all the times you've shown up in my life, all the ways you have worked in the past. Thank you that we have those times TOGETHER--they bring assurance of how You work and how much you care.
6 I reach out for you. I thirst for you as parched land thirsts for rain.
As never before, I hunger and thirst for YOU in the midst of this trial. In "easy" times it's easy to go my own way. In the "hard" times it's hard to stay away from You.
7 Come quickly, LORD, and answer me, for my depression deepens. Don't turn away from me, or I will die.
Without YOU all hope would die. What do people do who don't have YOU--where do they go, who do they lean on? I don't ever want to experience the absence of YOU in my life. You are my only hope.
8 Let me hear of your unfailing love to me in the morning, for I am trusting you. Show me where to walk, for I have come to you in prayer.
Your love and mercy ARE new every morning. Yesterday is a memory and a reminder of your faithfulness. Tomorrow is a hope. Today I experience YOU and it's new every morning. Give me the strengh for THIS day. Help me to trust you THIS day. Help my unbelief when it shows up THIS day. Give me your direction and guidance and then help me to trust and obey THIS day. Tomorrow I'll ask you again!
9 Save me from my enemies, LORD; I run to you to hide me.
Bury me in your arms--the only place of total peace and protection--what an incredibly comforting picture.
10 Teach me to do your will, for you are my God. May your gracious Spirit lead me forward on a firm footing.
In Your will is where I long to live. Your gracious Spirit is full of patience so when it takes many tries to "get it," keep after me. Help me to stay on firm footing--to stay on the Rock.
11 For the glory of your name, O LORD, save me. In your righteousness, bring me out of this distress.
Yours is the glory--may all the honor be Yours for what You are doing. May You shine thru my life and show others Your love, care and faithfulness.
12 In your unfailing love, cut off all my enemies and destroy all my foes, for I am your servant.
The enemies of fear and anxiety, of ALS robbing me of my husband. In the midst of all that there is YOU.
This is what is written on the bookmark:
"Be at peace. Do not fear the changes of life. Rather look to them with full hope as they arise. God, whose very own you are, will deliver you out of them. he has kept you hitherto, and He will lead you safely through all things; and when you cannot stand it, God will bury you in His arms. Do not be afraid of what may happen tomorrow; the same everlastingFather who cares for you today will take care of you then and everyday. He will either shield you from suffering, or will give you unfailing strength to bear it. Be at peace and put aside all anxious thoughts and imaginations." (St. Francis de Sales)
Tuesday, June 9, 2009
A Lundstedt Surprise
GREAT DAY! We all said after the doctor's visit that we were apprehensive about how the visit was going to go--were we surprised! Our doctor today was a specialist in respiration--Dr. Benditt at the UW. First, he was early! He was accompanied by his nurse and his assistant, Louie, who we met with last week. Kemp and Kylisa were with us. Next, he was so real--that's been our impression of all the UW doctors and specialists we have met--these people are tops in their field and they genuinely care--that was Tom's comment when we left today--they care and they listen!
After examining Tom, Dr B talked to us about his findings--he was surprised by Tom's strength in his arms and legs. The disease has really focused on the throat area and because of that he is a good candidate for a relatively new surgical procedure where they separate the wind pipe and the esophagus. This is to prevent choking and aspirating fluid into the lungs. He said that Tom could potentially even put food in his mouth--swallow it or not--since there wouldn't be any danger of choking on it or aspirating. (Kemp immediately piped up that crabbing season is right around the corner!) After discussing it we all agreed that seeing this new doctor was the next step.
We are also being referred to a gastroenterologist (and to think that 2 months ago I couldn't spell OR pronounce it) at the UW. We have really slipped through the cracks because Tom's tube was put in by hospital doctors so no one really claims responsibility for caring for the tube and I have had to be very persistent to get help with it. We are very confident that once we get a UW doc we'll be able to get the help we need. Yesterday the triage nurse at the gastro dr office we had been to before told me that I should loosen the disc around the tube myself! Are they kidding me?! I've never been shown how to do that and after trying briefly I know that's one thing I'm not making up. I feel like I've gotten a degreen in pharmacology--the gastro stuff I'm leaving to the experts!
We went into the appointment thinking about end of life decisions that need to be made. We left thinking we have a whole lot more living to do!!!!! I know we walked out with much more spring in our step.
Tom came up with a new definition for ALS tonight---A Lundstedt Surprise! I like it. The doctors agree that ALS is not attacking Tom as would be expected. We just think it's because of his Viking blood! He's tough. And I am thankful for that and for his sense of humor--oh, how he likes to make people laugh!
After examining Tom, Dr B talked to us about his findings--he was surprised by Tom's strength in his arms and legs. The disease has really focused on the throat area and because of that he is a good candidate for a relatively new surgical procedure where they separate the wind pipe and the esophagus. This is to prevent choking and aspirating fluid into the lungs. He said that Tom could potentially even put food in his mouth--swallow it or not--since there wouldn't be any danger of choking on it or aspirating. (Kemp immediately piped up that crabbing season is right around the corner!) After discussing it we all agreed that seeing this new doctor was the next step.
We are also being referred to a gastroenterologist (and to think that 2 months ago I couldn't spell OR pronounce it) at the UW. We have really slipped through the cracks because Tom's tube was put in by hospital doctors so no one really claims responsibility for caring for the tube and I have had to be very persistent to get help with it. We are very confident that once we get a UW doc we'll be able to get the help we need. Yesterday the triage nurse at the gastro dr office we had been to before told me that I should loosen the disc around the tube myself! Are they kidding me?! I've never been shown how to do that and after trying briefly I know that's one thing I'm not making up. I feel like I've gotten a degreen in pharmacology--the gastro stuff I'm leaving to the experts!
We went into the appointment thinking about end of life decisions that need to be made. We left thinking we have a whole lot more living to do!!!!! I know we walked out with much more spring in our step.
Tom came up with a new definition for ALS tonight---A Lundstedt Surprise! I like it. The doctors agree that ALS is not attacking Tom as would be expected. We just think it's because of his Viking blood! He's tough. And I am thankful for that and for his sense of humor--oh, how he likes to make people laugh!
Monday, June 8, 2009
Jam packed weekend
It amazes me how something that is affecting our emotions can have such a physical impact! For most of the weekend I had this feeling that there was a heaviness resting on me. It was like when you go to the dentist and they put that heavy, protective apron on you when they exray your teeth. It felt like I was carrying around that apron and it covered my whole body, even my head. I just couldn't get out from under it. I think that Barb is right when she says that the urge to scream was my brain getting its hands around the reality of what is going on--it helps to know that someone else has experienced it and can say that it will pass. While under it I was having doubts that I could carry on any of my responsibilities and felt like a river of anxiety was washing over me. Could I get my head out of the water or was I going to drown? Couldn't write in the middle of it--just kept getting pushed down.
Then yesterday--good timing! First, at church I was back with the kids for the first time in weeks and it felt sooooo good--just to be in their busy, free spirited world and have fun with them. Then it was off for a short stay at a baby shower for Tracey and Peter. Can't wait to see Tracey holding her little Gracie, the baby she's longed for for so long. AND to see her try to dress Gracie in ALL the outfits grandma Marilyn has had such fun buying! THEN it was off to Kemp and Angie's to see all the work they have done on their backyard, to hear plans for what they are going to do with the house AND to get in a 20 minute nap. THEN it was off to Carkeek Park for family photos! 17 of us ALL at the same place at the same time! We actually did it and hopefully we got some good shots. THEN it was back to Kirstin and Yura's for a barbecue to celebrate Katie's birthday AND for Tom to lay down. He said he enjoyed hearing all the family conversation swirling around him.
Tom seemed very somber for most of the day but when I would ask him how he felt he assured me he was fine and last night he said how much he enjoyed being with everyone. He loves his family so much--we couldn't ask for better! I love watching how each one cares for Tom in their own way.
In the midst of the day Kylisa asked me if the dentist's apron was still on and I was delighted to answer, no, it's hanging on the wall! Don't know when it was lifted but it sure felt good to have it gone.
The Sunday devotion really spoke to me. I'll share it.
Even there shall Thy hand lead me, and Thy right hand shall hold me. Psalm 139:10
Devotional thought:
"I've heard people say, "Pray for us that we'll hold out faithful to the end." I think I know what they mean, but I always smile. I picture Noah's ark, and I can see Noah and his wife and family. Rather than being on the inside, they're holding on to some slimy pegs on the outside of the ark. And Noah says to Mrs. Noah, "Honey, pray for methat I'll hold out faithful to the end." But God said to noah, "Come into the ark," and the same God that shut the water out, shut Noah in. Now Noah may have fallen down inside that ark, but he never fell out of it. It's not that wehold on to Him, but that He holds on to us."
What great assurance--it doesn't depend on me; it depends on the One I depend on!
Then yesterday--good timing! First, at church I was back with the kids for the first time in weeks and it felt sooooo good--just to be in their busy, free spirited world and have fun with them. Then it was off for a short stay at a baby shower for Tracey and Peter. Can't wait to see Tracey holding her little Gracie, the baby she's longed for for so long. AND to see her try to dress Gracie in ALL the outfits grandma Marilyn has had such fun buying! THEN it was off to Kemp and Angie's to see all the work they have done on their backyard, to hear plans for what they are going to do with the house AND to get in a 20 minute nap. THEN it was off to Carkeek Park for family photos! 17 of us ALL at the same place at the same time! We actually did it and hopefully we got some good shots. THEN it was back to Kirstin and Yura's for a barbecue to celebrate Katie's birthday AND for Tom to lay down. He said he enjoyed hearing all the family conversation swirling around him.
Tom seemed very somber for most of the day but when I would ask him how he felt he assured me he was fine and last night he said how much he enjoyed being with everyone. He loves his family so much--we couldn't ask for better! I love watching how each one cares for Tom in their own way.
In the midst of the day Kylisa asked me if the dentist's apron was still on and I was delighted to answer, no, it's hanging on the wall! Don't know when it was lifted but it sure felt good to have it gone.
The Sunday devotion really spoke to me. I'll share it.
Even there shall Thy hand lead me, and Thy right hand shall hold me. Psalm 139:10
Devotional thought:
"I've heard people say, "Pray for us that we'll hold out faithful to the end." I think I know what they mean, but I always smile. I picture Noah's ark, and I can see Noah and his wife and family. Rather than being on the inside, they're holding on to some slimy pegs on the outside of the ark. And Noah says to Mrs. Noah, "Honey, pray for methat I'll hold out faithful to the end." But God said to noah, "Come into the ark," and the same God that shut the water out, shut Noah in. Now Noah may have fallen down inside that ark, but he never fell out of it. It's not that wehold on to Him, but that He holds on to us."
What great assurance--it doesn't depend on me; it depends on the One I depend on!
Saturday, June 6, 2009
AHHHHHHHHHH!!!!!!!
And I thought we had a good night's sleep! Tom tells me he was up 4 times--I slept through it all. Even so I am physically spent today--feel totally wiped out! Went to the grocery store and had to keep taking deep breaths to keep from letting out a huge scream. The only thing that kept me from letting loose was the thought of having to deal with the after effects of it! Now that makes me chuckle--at the time it wasn't funny! Is it exhaustion, anxiety--what???? Hoping and praying this feeling does not last.
Tom is really looking forward to seeing the work Kemp did on his yard tomorrow. It's family picture day so we'll get to see the whole family in the same place at the same time--doesn't get much better than that.
I'm going to try taking a nap.
Tom is really looking forward to seeing the work Kemp did on his yard tomorrow. It's family picture day so we'll get to see the whole family in the same place at the same time--doesn't get much better than that.
I'm going to try taking a nap.
Friday, June 5, 2009
Katie is 19!
Answer to prayer--the respiratory guy called to say that the respiratory doctor wants to see Tom ahead of the July 28th appointment so Tuesday at 4:00 we'll meet him at UW. We also heard from Option Care--they will have the BiPap machine for us on Wednesday. The request for the talking machine (need to find out what they are actually called) has been sent to PA--hoping to hear back from them soon.
Tom has been busy tackling a new puzzle. I am missing his voice today--just want to hear him talk to me--to share like we have for all these years, taking it so much for granted. I'm also missing his strong arms around me.
Old friends who we had not seen in a very long time stopped by yesterday and were a huge encouragement. It was fun to reminisce (sp??? where is spell check when you need it???) It was a good reminder to not put off spending time with special people.
Today we celebrated granddaughter Katie's 19th birthday at Queen Mary's Tea Room in Seattle--3 generations together. What joy she brings to our family!
It's hard to write tonight for some reason. This week I have been waking up feeling like we are in the eye of the storm--turbulance behind and great uncertainty ahead. Then I realized that it was really God's peace in the midst of this trial and it really is new every morning. While I have every confidence it will remain throughout it really is fresh and new with each day--kind of a surprise that it's still there, a sense of awe and wonder that such a thing can be--that He cares so much and is so good to be so faithful even to us.
Tom has been busy tackling a new puzzle. I am missing his voice today--just want to hear him talk to me--to share like we have for all these years, taking it so much for granted. I'm also missing his strong arms around me.
Old friends who we had not seen in a very long time stopped by yesterday and were a huge encouragement. It was fun to reminisce (sp??? where is spell check when you need it???) It was a good reminder to not put off spending time with special people.
Today we celebrated granddaughter Katie's 19th birthday at Queen Mary's Tea Room in Seattle--3 generations together. What joy she brings to our family!
It's hard to write tonight for some reason. This week I have been waking up feeling like we are in the eye of the storm--turbulance behind and great uncertainty ahead. Then I realized that it was really God's peace in the midst of this trial and it really is new every morning. While I have every confidence it will remain throughout it really is fresh and new with each day--kind of a surprise that it's still there, a sense of awe and wonder that such a thing can be--that He cares so much and is so good to be so faithful even to us.
Tuesday, June 2, 2009
Uff da!
It was a full day. Started off with a doctor's visit for me--followup on blood pressure meds and I am doing great--lower than it has been in a long time. YEAH! Talked to my doc about Tom's burning throat and white stuff on his tongue. She thought it could be thrush, a fungus infection. That could be the answer for the burning in Tom's throat. That would be fantastic! Got an appointment for a couple of hours later and Tom's doc concurred. New prescription to a pharmacy that already knows us on a first name basis!
THEN it was in to UW to see a respiratory doctor's assistant who ran a bunch of tests. We were with him for 2 hours. I told him I was surprised how much we liked UW med ctr. Had thought of it as a teaching hospital but have been treated extremely well and with great patience. He liked hearing that. He recommended a BiPap machine for Tom to help with breathing when he sleeps--a possible answer to better sleep! A cough assistance machine didn't work because of the paralysis in Tom's vocal cords. He is also going to move the resp. doctor appointment up from July 28th. Another answer to prayer! He gave us more material to read in prepartion for that visit. We have some decisions to make regarding ventilation down the road. I pray God will help us make good ones.
THEN we went to Kirstin's and met with Dee who is helping to design Kirstin and Yura's house to fit in 2 more people. She's amazing when it comes to arranging furniture and creative living--what a gift she is giving us.
THEN we went to Kylisa's to visit, play with the boys, share a dinner and pick up food Kylisa has fixed for her mom.
Arrived home to find flowers waiting for us. Thank you D&G! What an amazing thing to be cared for and loved.
NOW we are home and ready to call it a night. Uff da!
THEN it was in to UW to see a respiratory doctor's assistant who ran a bunch of tests. We were with him for 2 hours. I told him I was surprised how much we liked UW med ctr. Had thought of it as a teaching hospital but have been treated extremely well and with great patience. He liked hearing that. He recommended a BiPap machine for Tom to help with breathing when he sleeps--a possible answer to better sleep! A cough assistance machine didn't work because of the paralysis in Tom's vocal cords. He is also going to move the resp. doctor appointment up from July 28th. Another answer to prayer! He gave us more material to read in prepartion for that visit. We have some decisions to make regarding ventilation down the road. I pray God will help us make good ones.
THEN we went to Kirstin's and met with Dee who is helping to design Kirstin and Yura's house to fit in 2 more people. She's amazing when it comes to arranging furniture and creative living--what a gift she is giving us.
THEN we went to Kylisa's to visit, play with the boys, share a dinner and pick up food Kylisa has fixed for her mom.
Arrived home to find flowers waiting for us. Thank you D&G! What an amazing thing to be cared for and loved.
NOW we are home and ready to call it a night. Uff da!
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