Great news! The eye gaze arrived on Thursday! Thank you all for your prayers!
We still need to program info into it, but we are excited about the possibilities. It is amazing the technology that exists. To think that my dad's eye can be the mouse is incredible!
Thank you again for all your prayers!
Michelle
Saturday, January 22, 2011
Sunday, January 9, 2011
Birthday Blessings!
Today is my dad's birthday, and we have been having a great time celebrating his life! Yesterday we had a birthday party while JP was home. Just the family, but fun none the less! The little kids certainly make everything lively! Mom and dad have a little kids kitchen, so the kids "cooked" us all sorts of things to eat. And Marcelo really likes to throw the sponge basketball....especially at Papa....which makes my dad laugh and smile...only encouraging Marcelo to throw it at him again. =)
Senna gave dad a beautiful picture of her kissing her Papa! It is now hanging just above my dad's head. It is so great for our little ones to still connect with my dad, even if he can't do things as he used to.
Today, Ethan had a "date" with Papa. It was a body painting date! Ethan first painted with body paint all over his own legs. Then asked me to paint on his face (a rainbow, a beach ball, and car). Then, with all these decorations, Ethan asked Papa if he could paint his legs for his birthday. So, my dad has all sorts of things painted all over his legs right now. Including three dinosaurs, several shapes, a coffee mug, a various other designs. Let me tell you that today's birthday date was filled with smiles, giggles, and laughter. It was a good birthday!
Health wise my dad is having a good day as well. He still have very thick secretions, but overall he is breathing well today. Each week he continues to decline, some weeks more than others. But we know that's going to happen. So, in the midst of all of this, we attempt to create more positive family memories together. I think yesterday and today were two great ones!
I wonder if my mom will let Ethan birthday body paint her this Thursday for her birthday? Hmmmmm.....
Thank you all for your continued prayers and support!
Michelle
Senna gave dad a beautiful picture of her kissing her Papa! It is now hanging just above my dad's head. It is so great for our little ones to still connect with my dad, even if he can't do things as he used to.
Today, Ethan had a "date" with Papa. It was a body painting date! Ethan first painted with body paint all over his own legs. Then asked me to paint on his face (a rainbow, a beach ball, and car). Then, with all these decorations, Ethan asked Papa if he could paint his legs for his birthday. So, my dad has all sorts of things painted all over his legs right now. Including three dinosaurs, several shapes, a coffee mug, a various other designs. Let me tell you that today's birthday date was filled with smiles, giggles, and laughter. It was a good birthday!
Health wise my dad is having a good day as well. He still have very thick secretions, but overall he is breathing well today. Each week he continues to decline, some weeks more than others. But we know that's going to happen. So, in the midst of all of this, we attempt to create more positive family memories together. I think yesterday and today were two great ones!
I wonder if my mom will let Ethan birthday body paint her this Thursday for her birthday? Hmmmmm.....
Thank you all for your continued prayers and support!
Michelle
Sunday, January 2, 2011
Christmas
This Christmas was a wonderful time for our family. It would not have been so wonderful and blessed without the DELICIOUS Christmas dinner a family in the church made for us! We were so spoiled by incredible food! It really helped make the day seem more like Christmas. Without those items we would still have gotten together...but I wouldn't have been surprised at all had we ordered pizza or something...because it's just too much to try to have "all the fixins" AND care give for my dad AND keep an eye on the little ones (making sure Marcelo in particular doesn't switch all the dials on the cough assist machine, or anything else with buttons)!
As we knew would happen with ALS, my dad continues to decline. Some days it is hard for any of us to make out what he is saying because his speech is so slurred. Other days he is much easier to understand. Each day is different. In fact a morning can be quite different than an afternoon or evening.
He continues to enjoy listening to audio books, and watch tv....particularly football these days. And he has become an avid watcher of Jeopardy and Who Wants to be a Millionaire. Previous to being bedridden he hardly took time to watch tv (unless it was 24). But, if he ever was in the room when Jeopardy or Millionaire was on he always knew the answers. Even now you can sometimes hear his slurred voice trying to get out the answer before the contestant does. =)
A prayer request we'd love to have you join us in is for an eye "mouse" to become available for dad. I'm not sure of the technical name for it, but he has this speaking computer that can speak on his behalf...but right now it requires touch. But there is this eye gaze piece that allows his eyes to be a mouse and click what he wants to say. He is next on the ALS Associations list to receive one should one be donated. He was supposed to receive one the end of November, but the family that donated it had some sort of family feud about it and it's ended up in the Kent Police station. As far as I know it is still there until the family works something out. Whether it is this particular eye gaze or a different one, it sure would be helpful in communicating with my dad.
Thanks for your prayers and support! Happy New Year!
Michelle
As we knew would happen with ALS, my dad continues to decline. Some days it is hard for any of us to make out what he is saying because his speech is so slurred. Other days he is much easier to understand. Each day is different. In fact a morning can be quite different than an afternoon or evening.
He continues to enjoy listening to audio books, and watch tv....particularly football these days. And he has become an avid watcher of Jeopardy and Who Wants to be a Millionaire. Previous to being bedridden he hardly took time to watch tv (unless it was 24). But, if he ever was in the room when Jeopardy or Millionaire was on he always knew the answers. Even now you can sometimes hear his slurred voice trying to get out the answer before the contestant does. =)
A prayer request we'd love to have you join us in is for an eye "mouse" to become available for dad. I'm not sure of the technical name for it, but he has this speaking computer that can speak on his behalf...but right now it requires touch. But there is this eye gaze piece that allows his eyes to be a mouse and click what he wants to say. He is next on the ALS Associations list to receive one should one be donated. He was supposed to receive one the end of November, but the family that donated it had some sort of family feud about it and it's ended up in the Kent Police station. As far as I know it is still there until the family works something out. Whether it is this particular eye gaze or a different one, it sure would be helpful in communicating with my dad.
Thanks for your prayers and support! Happy New Year!
Michelle
Monday, December 20, 2010
Harder Days
Over the past few months, we have had some hard moments but I think this past Tuesday was the hardest day we have had yet. My dad was congested all day, requiring constant usage of various medical equipment to help him. We also needed to lift him several times to help him breath better. For a good portion of the day and even part of the night we needed 2-3 caregivers present to help with various tasks. It was tiring, and hard to see my dad like that.
Praise the Lord, though, for a variety of things. That several caregivers were available to help that day, that his congestion cleared up by the late evening and he slept well, that he woke up with no congestion, and that we know that no matter what comes our way the Lord will help us through it!
Today is proving to be another really rough day for my dad (which then means a rough day for all of us). He is very congested, and needing constant help. We are happy to help, but it gets overwhelming after awhile. We would greatly appreciate your prayers.
Thank you all! We are so blessed to have your prayers and support though this difficult time!
Michelle
Praise the Lord, though, for a variety of things. That several caregivers were available to help that day, that his congestion cleared up by the late evening and he slept well, that he woke up with no congestion, and that we know that no matter what comes our way the Lord will help us through it!
Today is proving to be another really rough day for my dad (which then means a rough day for all of us). He is very congested, and needing constant help. We are happy to help, but it gets overwhelming after awhile. We would greatly appreciate your prayers.
Thank you all! We are so blessed to have your prayers and support though this difficult time!
Michelle
Friday, December 10, 2010
Photos
As I look at some recent photos I smile knowing my dad has been enjoying his grandkids. Senna and Ethan helped Nana decorate the Christmas tree this year...and they loved every minute of it! It was all within view of Dad, so he got to enjoy their squeels of delight!
Another photo is one of Ethan "reading" a book to his Papa. They are both smiling, and I know they both enjoyed themselves that day together.
What interesting weather this pre-winter has brought in! A huge thanks to all our friends who helped my parents get a generator the night the power went out! No sooner did they get a generator, and figure out how it works, did the power go out. It's like the Lord was holding off the 2 day power outage until there would be power to run my dad's cough assist and other machines....not to mention heat!
Dad's health continues to slowly decline and we are extremely cautious about any potential germs he may come in contact with. He has less of a voice (we think partially due to the cough assist machine), and that just makes our guessing game of what he is saying even harder. But all in all, he is in good spirits. It is a tough time for all of us, but we know the Lord is with us and is helping us through this. What peace there is in knowing this life is not the end....just the beginning of something absolutedly amazing and full of LIFE!
The phrase from David and Karen Maines' book comes to mind: "To the King, to the Kingdom, to the Restoration!"
Michelle
Another photo is one of Ethan "reading" a book to his Papa. They are both smiling, and I know they both enjoyed themselves that day together.
What interesting weather this pre-winter has brought in! A huge thanks to all our friends who helped my parents get a generator the night the power went out! No sooner did they get a generator, and figure out how it works, did the power go out. It's like the Lord was holding off the 2 day power outage until there would be power to run my dad's cough assist and other machines....not to mention heat!
Dad's health continues to slowly decline and we are extremely cautious about any potential germs he may come in contact with. He has less of a voice (we think partially due to the cough assist machine), and that just makes our guessing game of what he is saying even harder. But all in all, he is in good spirits. It is a tough time for all of us, but we know the Lord is with us and is helping us through this. What peace there is in knowing this life is not the end....just the beginning of something absolutedly amazing and full of LIFE!
The phrase from David and Karen Maines' book comes to mind: "To the King, to the Kingdom, to the Restoration!"
Michelle
Tuesday, November 30, 2010
Halloween and Birthdays
This month has gone by so fast. One favorite memory of mine was actually October 31st. The grandkids all came over to mom and dad's house dressed up in costumes ready to hand out candy to anyone who came to the door. Ethan made sure Papa was a part of things by making a costume for him! He cut strips along a paper bag making a hula skirt. And found a fake lei for Papa to wear. So we laid the items on top of dad as he lay on his hospital bed. It was great!
Something dad has been asking us to do lately is to the lower his bed as low as it can go when the grandkids come over. That way they can see him, and he can see them. Ethan likes to push the big brown chair over next to the bed so he can climb up and be right next to Papa...especially when he wants to kiss him hello or goodbye.
Last night we celebrated Ethan's birthday over at mom and dad's house. Ethan, Senna, and Marcelo all "performed" various songs for everyone. Ethan got a pretend guitar and keyboard, so the two little ones attempted to play the keyboard together, while Ethan played the guitar. Ethan enjoys getting his stool, standing on it to perform, making sure Papa can see him, along with everyone else. They are pretty funny to watch!
Dad's health continues to slowly decline. We are very careful to not expose him to any colds, coughs, etc. He seems steady for a week or so, then he has a rough couple of days, then a new normal starts again for a week or more. Nothing giant, but definately a slow decline. We have had to cut back on his food intake a bit since his body wasn't absorbing all that we were giving him through the food peg. I know we'd all like to think this is a temporary issue, but more than likely it's just another way his body is declining.
Although it is hard for all of us to understand him, we are finding that certain family members are now acting as "interpreters" for other family members or caregivers. It's kind of funny sometimes, and yet frustrating as well. I wonder if for those of us who "interpret" it counts as knowing a second language. =)
That's all for now. Thank you everyone for your continued prayers and encouragement. We love you!
Michelle
Something dad has been asking us to do lately is to the lower his bed as low as it can go when the grandkids come over. That way they can see him, and he can see them. Ethan likes to push the big brown chair over next to the bed so he can climb up and be right next to Papa...especially when he wants to kiss him hello or goodbye.
Last night we celebrated Ethan's birthday over at mom and dad's house. Ethan, Senna, and Marcelo all "performed" various songs for everyone. Ethan got a pretend guitar and keyboard, so the two little ones attempted to play the keyboard together, while Ethan played the guitar. Ethan enjoys getting his stool, standing on it to perform, making sure Papa can see him, along with everyone else. They are pretty funny to watch!
Dad's health continues to slowly decline. We are very careful to not expose him to any colds, coughs, etc. He seems steady for a week or so, then he has a rough couple of days, then a new normal starts again for a week or more. Nothing giant, but definately a slow decline. We have had to cut back on his food intake a bit since his body wasn't absorbing all that we were giving him through the food peg. I know we'd all like to think this is a temporary issue, but more than likely it's just another way his body is declining.
Although it is hard for all of us to understand him, we are finding that certain family members are now acting as "interpreters" for other family members or caregivers. It's kind of funny sometimes, and yet frustrating as well. I wonder if for those of us who "interpret" it counts as knowing a second language. =)
That's all for now. Thank you everyone for your continued prayers and encouragement. We love you!
Michelle
Sunday, October 31, 2010
Dates with "Papa"
This past week Ethan (almost 4 years old) and Papa had a "date" together. Ethan asked me how Papa could have a "date" with him since he cannot get out of the house and doesn't get in his wheelchair. I told him some "dates" people have inside a house....as long as they are doing something together.
So....Ethan and Papa got matching tattoos! =) The kid kind that's supposedly supposed to come off with soap and water. (I say supposedly because they are both still wearing their tattoos...but no longer by choice). =)
Ethan and I found some tattoos that say "Jesus Is The Light" on them...so that's what we used. Then Ethan went on to "perform" the SEEDS worship music song of John 8:12 "Jesus said I am the light of the world, whoever follows me will never walk in darkness, but will have the light of life."
We are looking forward to more grandkid "dates" in the future. If you have any ideas for us, feel free to post them.
Thank you all for your continued support and prayers! We are blessed, and we love you!
Michelle
p.s., Nana (Carol) also had a "date" with Ethan this past week. They went to Fish Park for an "adventure" followed by an cone at McDonalds. As they went through the drive thru and had already ordered the cone, Ethan told Nana to tell the people at the window to please put ice cream in the cone. He thought Nana only ordered a cone...but no ice cream!
So....Ethan and Papa got matching tattoos! =) The kid kind that's supposedly supposed to come off with soap and water. (I say supposedly because they are both still wearing their tattoos...but no longer by choice). =)
Ethan and I found some tattoos that say "Jesus Is The Light" on them...so that's what we used. Then Ethan went on to "perform" the SEEDS worship music song of John 8:12 "Jesus said I am the light of the world, whoever follows me will never walk in darkness, but will have the light of life."
We are looking forward to more grandkid "dates" in the future. If you have any ideas for us, feel free to post them.
Thank you all for your continued support and prayers! We are blessed, and we love you!
Michelle
p.s., Nana (Carol) also had a "date" with Ethan this past week. They went to Fish Park for an "adventure" followed by an cone at McDonalds. As they went through the drive thru and had already ordered the cone, Ethan told Nana to tell the people at the window to please put ice cream in the cone. He thought Nana only ordered a cone...but no ice cream!
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