Merry Christmas to all!! I don't know how to put all of my feelings into words this year. It seems that there is so much on my mind. I sit and watch our family being all together knowing how precious each life is. I am so blessed to be the mom of some awesome children. I hear Ben pray and it is a blows my mind where he came from and now where he is, and Nathan too. So many people tell us how lucky they are, but I never see it that way. We are the "lucky" ones. Even though I never say the word lucky, I feel it is just another one of God amazing works. He sure has filled my heart and I feel honored to be His child.
This Christmas we are spending most of it at home. We can't have any sickness come into the house. Kasi is doing really well and I am super happy to be home. Kasi did have a doctor appointment in which we found out she has actually lost 2 lbs since she has been home. Her doctor really made it clear to her that she needs to eat even if that means taking her meds to eat. Another thing we have to do is keep the house warm so she doesn't waste calories keeping her body warm. So, we set the temp at 70 and that is where it stays. Believe it or not she still wears a sweat shirt and sometimes a hat because it is "cold".
I have watched her go through so much in the last 2 months that this weight thing seems so little in comparison to everything else. I know it is very important too because it could put her back into the hospital. That is why she can't get sick either. Her body doesn't have the strength to fight it. We know our God is amazing and His hand in on her, so we are smart with our choices, and we know He will do the rest.
So, all of my reflecting on my heart and what our family has been through, this is what I have been thinking about during this Christmas season. Something new to me that is for sure, but it makes sense to where we are.
Christmas Eve and Mary and Joseph were searching for a place to stay. How long was Mary in labor? How far did she have to walk? How did she feel knowing the King of Kings was about to be born and there wasn't any place for Him. Now it would be hard just not being able to find a place being in labor, but to think that the baby you are carrying is "the baby". Of course she didn't fully understand what His work was going to be about, but she knew He was special and here they are lying Him in a manger. We always think about how awesome it is that Jesus was born in a manger because it shows His humble heart, but what were Joseph and Mary feeling and thinking? I know how I would feel as a mom, and a mom of a first born. We wouldn't settle for anything less than the best hospital.
Then to watch Jesus grow. How great it must have been as a mom to watch Him learn and experience life, knowing all the while He was God's Son! Think about watching him at the age of 12 or how they must have felt when they couldn't find him. Oh My, loosing a child for a moment is one thing, but the responsibility they must have felt knowing how special He was to the world and they didn't know where he was. Overwhelmed I am sure!
Then on to watch Jesus minister. I am sure it was kind of hard to watch some leaders of the church talk bad about your son. The talk that must have happened in "his home town" where he was not welcomed. As a mom, I might have been angry, hurt, or both. I just wonder how was it to be his sibling? To see so many following him, and to hear him speak with such wisdom. Making the Bible make sense in a different way. In a way that touches their hearts.
All of this, for years being together, growing, learning, and watching. Over 30 years being a family, bound by flesh of this world. Mary did you know, that your baby boy, was the Saviour to the world. How did she feel seeing him suffer? How was it at the foot of the cross of her son, hearing all of the mocking and seeing what they were doing to him? How did she bare such pain............for me. For Me. For Ron For Kasi. For Aubree. For Ben. For Nathan. For Anthony (the boys brother who we pray will grow up knowing Jesus!)
For You. How did his siblings feel? How was the family the day after? How was their grief? They didn't have the full gift of the Holy Spirit yet. They did not know he was going to rise again for the world! (well, they would have if they would have listened to all of his teaching, but it didn't make sense to them...yet) How incredible, the baby Mary and Joseph were struggling to find a place to lay down, was hanging on a cross in front of them. I am sure it didn't make sense because he had not been a "savior".....YET....He was! Baring our sin and shame, so we can have this incredible gift of being close to our Father once again.
As I reflect on Christmas this year, I reflect on the whole story. I have seen our family suffer through some circumstances of living in a broken world. I have also seen God's work not only in our life, but through others all over the place. I am touched that God would choose us to be the faithful ones who could share God's good news that is for all people. A Saviour has been born!! And even more than that, He is living here with us. Jesus is going before us, along side us, and sometimes pushing us from behind. I have felt His peace and know His love even more today.
Be Blessed this Christmas with the love of God that is greater than what we can conceive. Even if you are in the middle suffering or hard circumstances, there are people who have walked this path before us and God was with them and He will be with us. He will never leave us or forsake us. His mercies are new every morning, great is His faithfulness. Thank you Jesus!
May you all celebrate the Christmas Miracle, the whole story, the salvation of all who believe, being laid in a manger......
Fragile fingers sent to heal us, tender brow prepared for thorns, tiny heart whose blood will save us.....
Welcome to our world!!
Friday, December 24, 2010
Thursday, December 16, 2010
HOME
I never knew a bed could feel so good! What a great night of sleep with no beeping, doctors coming in at all times of the night and no being woke up when Kasi would have her vitals taken. Unlike when she was a baby and we came home, I was not nervous at all about her vitals all night. It was a great feeling! Kasi slept great too. I think all she needed to feel better was to come home. She has not taken any meds yet today which is great!
As I sit here and think about the best part of being home, I really don't know what tugs at my heart more? The joy in the boys as we walked through the door, watching all of the kids being together last night, or just sitting watching them play, laugh, and be silly together. I have missed this so much. Even the craziness of it all.
Today we will be putting the finishing touches on our Christmas tree and I am very excited about that. All of you who know me well know that I always put Christmas music on, and when it is all done, we all sing O Christmas Tree! Not the whole song, but just enough to all smile and laugh.
Here is where we are at with Kasi. We know that the doctors did not repair her whole aorta like they really wanted to. The reason why is because of a few things. The main reason is because when they shut down the blood supply to the lower extremities they have a time frame to get things done. This time frame from start to finish is about 30 minutes, but with Kasi they shut her blood supply off for 60 minutes and they still were not into the lowest part of her aorta. They knew that they were out of time and when looking at her lower aorta they felt like it was a better decision to stop then to try and continue and fix the last part. This is because the aorta, by her renal vessels and below, looks to be elastic enough to grow with the proper blood pressure to it. So, with exercise it should start flowing better, but we will not know exactly what will happen so we will have many follow ups in the months and years to come. This is a normal for us though. Her kidneys are getting good blood flow to them, but we will need to start seeing a kidney Dr. again. Our previous kidney Dr. has moved on so this will be a harder transition. Not because the new Dr. in the office isn't good, but we had the best. We heard from the specialist at U of M that Dr. Cai is really good too, so we are happy with that.
Kasi also will not be able to go back to school until Feb. 15 ish. I think that is worse case scenario. Looking at her you wouldn't think she would have to wait that long. We were told 6-8 weeks from yesterday, so the count down begins! She will then go to school 4 hours a day for about 2 weeks. It takes a long time for her body to get strength back and we do have a walking plan we need to start as soon as she feels good enough to go out and do it. I am thinking we will start today. Outside and about an 1/8th of a mile. This will take all her energy and she will most-likely need a nap after.
As I start to look back over the last month and more I see all of God faithfulness to us. I look at the fundraiser that so many of you were involved in and the amount that was raised I was shocked at first. Now I see it as God knowing how much we really needed. I was thinking on the way home yesterday how I really didn't have that added stress to our stay up there. It was a blessing to be able to go to a hotel room and just be with Kasi for bit everyday. We felt like we "escaped" and it was a place for family to stay when they would come and visit. We didn't have to worry about how we were going to pay our bills with Ron being off and me being off too. It is such a God thing and when He says "don't worry about tomorrow" He means, I have it all taken care of. How precious we are to Him. I will end today with these couple of verses.
Psalm 34:19
A righteous man my have many troubles, but the LORD delivers him from them all.....
James 5: 16
Therefore confess your sins to each other and pray for each other so that you may be healed, the prayer of a righteous man is POWERFUL and effective.
The body of Christ has come together in a powerful way and I stand in awe of all of you who were called to pray for us through this whole thing. It wasn't a church group, school group, or one specific thing we are involved in. It was the whole body of Christ working together without denominational boundaries, just being God's hand and feet to us. That is who we are. As a family we have always been "different" in the fact that we choose to try and not be bound by titles and we are not going to say one church is better than another. We live to honor God and bless those around us with the blessings God has given us. Our cup is over flowing with blessing and that is because of all of you. Young and old, students and elderly. Thank you!
As I sit here and think about the best part of being home, I really don't know what tugs at my heart more? The joy in the boys as we walked through the door, watching all of the kids being together last night, or just sitting watching them play, laugh, and be silly together. I have missed this so much. Even the craziness of it all.
Today we will be putting the finishing touches on our Christmas tree and I am very excited about that. All of you who know me well know that I always put Christmas music on, and when it is all done, we all sing O Christmas Tree! Not the whole song, but just enough to all smile and laugh.
Here is where we are at with Kasi. We know that the doctors did not repair her whole aorta like they really wanted to. The reason why is because of a few things. The main reason is because when they shut down the blood supply to the lower extremities they have a time frame to get things done. This time frame from start to finish is about 30 minutes, but with Kasi they shut her blood supply off for 60 minutes and they still were not into the lowest part of her aorta. They knew that they were out of time and when looking at her lower aorta they felt like it was a better decision to stop then to try and continue and fix the last part. This is because the aorta, by her renal vessels and below, looks to be elastic enough to grow with the proper blood pressure to it. So, with exercise it should start flowing better, but we will not know exactly what will happen so we will have many follow ups in the months and years to come. This is a normal for us though. Her kidneys are getting good blood flow to them, but we will need to start seeing a kidney Dr. again. Our previous kidney Dr. has moved on so this will be a harder transition. Not because the new Dr. in the office isn't good, but we had the best. We heard from the specialist at U of M that Dr. Cai is really good too, so we are happy with that.
Kasi also will not be able to go back to school until Feb. 15 ish. I think that is worse case scenario. Looking at her you wouldn't think she would have to wait that long. We were told 6-8 weeks from yesterday, so the count down begins! She will then go to school 4 hours a day for about 2 weeks. It takes a long time for her body to get strength back and we do have a walking plan we need to start as soon as she feels good enough to go out and do it. I am thinking we will start today. Outside and about an 1/8th of a mile. This will take all her energy and she will most-likely need a nap after.
As I start to look back over the last month and more I see all of God faithfulness to us. I look at the fundraiser that so many of you were involved in and the amount that was raised I was shocked at first. Now I see it as God knowing how much we really needed. I was thinking on the way home yesterday how I really didn't have that added stress to our stay up there. It was a blessing to be able to go to a hotel room and just be with Kasi for bit everyday. We felt like we "escaped" and it was a place for family to stay when they would come and visit. We didn't have to worry about how we were going to pay our bills with Ron being off and me being off too. It is such a God thing and when He says "don't worry about tomorrow" He means, I have it all taken care of. How precious we are to Him. I will end today with these couple of verses.
Psalm 34:19
A righteous man my have many troubles, but the LORD delivers him from them all.....
James 5: 16
Therefore confess your sins to each other and pray for each other so that you may be healed, the prayer of a righteous man is POWERFUL and effective.
The body of Christ has come together in a powerful way and I stand in awe of all of you who were called to pray for us through this whole thing. It wasn't a church group, school group, or one specific thing we are involved in. It was the whole body of Christ working together without denominational boundaries, just being God's hand and feet to us. That is who we are. As a family we have always been "different" in the fact that we choose to try and not be bound by titles and we are not going to say one church is better than another. We live to honor God and bless those around us with the blessings God has given us. Our cup is over flowing with blessing and that is because of all of you. Young and old, students and elderly. Thank you!
Tuesday, December 14, 2010
tomorrow
Well, we were told today that it is a very good possibility that tomorrow we will be going home! You know, I feel like it is really time. I can't explain it, but it is like we are at the end of a good stay with extended family and you know when the end must come. When some of the nurses got the news they have already given her hugs today because they are not working the rest of the week. It will be interesting to see how today is and if/when we go home tomorrow how many tears will be shed.
Kasi has been doing well. She still fights nausea and lower abdominal pain, but she is on meds to regulate this. We will be doing a follow up with our pediatrician for all of her "stuff" at home and hopefully have minimal trips back here. As for her surgery and the repair that has been done, she is doing great! She has really recovered here from that. We know though that she doesn't have much strength at all. As good as she feels, her body has gone through a ton and even a walk to the cafeteria yesterday made her muscles sore. It will be a while for her to gain that back. The doctor said it could take months for her to feel on top of it again.
Over and over we have been remind of God's goodness. We focus on His goodness to us and showing others His strength in us through this. Today I am just sitting filled with joy with all the good things that are ours. We are very blessed and we know this. And today we celebrate this too. Kasi will have a Doppler study done on her legs today and we know God has used the wisdom of the doctors to correct her blood flow. We are excited to see the results! We know how well she feels and that in itself is a testimony to the greatness and success of this surgery. Praise God from whom all blessings flow. That is not a one time out flowing, but a continual flow! Let the river flow, right from the throne of God!
Be blessed today, and hopefully my next update will happen at home! Pray for her to gain weight and have enough intake, that will be the key!
Kasi has been doing well. She still fights nausea and lower abdominal pain, but she is on meds to regulate this. We will be doing a follow up with our pediatrician for all of her "stuff" at home and hopefully have minimal trips back here. As for her surgery and the repair that has been done, she is doing great! She has really recovered here from that. We know though that she doesn't have much strength at all. As good as she feels, her body has gone through a ton and even a walk to the cafeteria yesterday made her muscles sore. It will be a while for her to gain that back. The doctor said it could take months for her to feel on top of it again.
Over and over we have been remind of God's goodness. We focus on His goodness to us and showing others His strength in us through this. Today I am just sitting filled with joy with all the good things that are ours. We are very blessed and we know this. And today we celebrate this too. Kasi will have a Doppler study done on her legs today and we know God has used the wisdom of the doctors to correct her blood flow. We are excited to see the results! We know how well she feels and that in itself is a testimony to the greatness and success of this surgery. Praise God from whom all blessings flow. That is not a one time out flowing, but a continual flow! Let the river flow, right from the throne of God!
Be blessed today, and hopefully my next update will happen at home! Pray for her to gain weight and have enough intake, that will be the key!
Friday, December 10, 2010
cookies!
Hello to all on this great Friday evening! Kasi is doing amazing and it is really hard for me to not pack her up and say "good-bye" to this place and come home. There are things that must be done here yet and of course we will continue them through. She is going to have to eat high calorie foods with little fat. That is interesting, I think she is just going to eat lots of pasta! She loves it and well, it has a ton of calories which will be a great help to get to the 2000 calorie mark for the day!
We also have a few more conversations to finish and a couple of nurses to say "good-bye" to. Some are not going to be working for a few days, and well, you never know we could be gone when they get back. Yes, that is becoming a possibility.
And the last thing is we have to hand out one more tin of cookies. Yep, we handed them all out and we had the privilege to give testimony to who God is through this! It was an amazing thing for us to do for all of our doctors. I have to say "thank you" to all the Unity students that made the cookies. They are amazing!! And you helped plant a seed to many up here and put many smiles on faces of doctors who sometimes don't hear all the goodness of God. We made sure we told them all who the cookies came from and they were all really impressed!
So, today we are very hopeful to go home on Monday. Kasi still thinks it will take longer, but I am really realistic to her going on Monday. It is a great journey that we have been on and will continue on from here. It will be even better to move this journey back home where we can grow together as a family again. I am convinced that our journey will continue in many areas of life. Our family is full of these stories of faith and we know the stories will continue because God never stops writing His story. He is with everyone who reads this too. I am wondering what would your page read? And would you allow everyone to read His story through you? It all goes back to something I have said along time ago, "do you have to say something? OR do you have something to say!" We have something to say, and we are saying it loud!
So I end tonights post with this. Yesterday when waiting in line for the bathroom a mom came up to me and said, "I have notice you have been here as long as we have and I don't know how you do it. How do you stay so upbeat and strong. I am exhausted!" I talked to her for a little bit and realized she really just needed to talk. As I listened I heard bits and pieces of "church" and "pastor" but never really heard anything about prayer. I didn't say anything about that to her of course that is not where I am going with this. Then she told me it had been a long 3 days and she asked how long we had been here. I almost felt bad, but then I thought, no God can show her His strength even greater for her knowing how long we were here. So I did tell her. We then parted ways, and I believe there is one more conversation that will happen with her up here. God is so good, and yes we have something to say about that!
Keep praying and praising! And just so you know, even through all of the struggles and frustrations, we have never lost our joy! True joy can never be stolen! And now we are living in that joy. Love to you all!
For I know the plans I have for you declares THE LORD!!!! Plans to prosper you, NOT to harm you, but to give you HOPE and a FUTURE!!!! Yes, the Lord declares this about Kasi.....hang on to your hats, His real work has just begun!
We also have a few more conversations to finish and a couple of nurses to say "good-bye" to. Some are not going to be working for a few days, and well, you never know we could be gone when they get back. Yes, that is becoming a possibility.
And the last thing is we have to hand out one more tin of cookies. Yep, we handed them all out and we had the privilege to give testimony to who God is through this! It was an amazing thing for us to do for all of our doctors. I have to say "thank you" to all the Unity students that made the cookies. They are amazing!! And you helped plant a seed to many up here and put many smiles on faces of doctors who sometimes don't hear all the goodness of God. We made sure we told them all who the cookies came from and they were all really impressed!
So, today we are very hopeful to go home on Monday. Kasi still thinks it will take longer, but I am really realistic to her going on Monday. It is a great journey that we have been on and will continue on from here. It will be even better to move this journey back home where we can grow together as a family again. I am convinced that our journey will continue in many areas of life. Our family is full of these stories of faith and we know the stories will continue because God never stops writing His story. He is with everyone who reads this too. I am wondering what would your page read? And would you allow everyone to read His story through you? It all goes back to something I have said along time ago, "do you have to say something? OR do you have something to say!" We have something to say, and we are saying it loud!
So I end tonights post with this. Yesterday when waiting in line for the bathroom a mom came up to me and said, "I have notice you have been here as long as we have and I don't know how you do it. How do you stay so upbeat and strong. I am exhausted!" I talked to her for a little bit and realized she really just needed to talk. As I listened I heard bits and pieces of "church" and "pastor" but never really heard anything about prayer. I didn't say anything about that to her of course that is not where I am going with this. Then she told me it had been a long 3 days and she asked how long we had been here. I almost felt bad, but then I thought, no God can show her His strength even greater for her knowing how long we were here. So I did tell her. We then parted ways, and I believe there is one more conversation that will happen with her up here. God is so good, and yes we have something to say about that!
Keep praying and praising! And just so you know, even through all of the struggles and frustrations, we have never lost our joy! True joy can never be stolen! And now we are living in that joy. Love to you all!
For I know the plans I have for you declares THE LORD!!!! Plans to prosper you, NOT to harm you, but to give you HOPE and a FUTURE!!!! Yes, the Lord declares this about Kasi.....hang on to your hats, His real work has just begun!
Thursday, December 9, 2010
Good news!
So here it is, the good news. One of our doctors said the word "home" and Kasi has moved up to a low fat diet. What this means is they are thinking the pancreatitus has gone through it's course, and the lower abdominal pain is coming from extra bacteria that is in her bowels. We are hoping that the pain will go away after she is on an antibiotic for a bit. Home will come as soon as she takes in enough calories, with her belly tolerating it and her numbers trending down. We are at 108 right now and that is higher than we have been in a while, but not super high. We will see what happens when we add some fat into her diet. Pray it stays down and that she doesn't feel nausea after she eats.
Lamentations 3: 22-26
22 Because of the LORD’s great love we are not consumed,
for his compassions never fail.
23 They are new every morning;
great is your faithfulness.
24 I say to myself, “The LORD is my portion;
therefore I will wait for him.”
25 The LORD is good to those whose hope is in him,
to the one who seeks him;
26 it is good to wait quietly
for the salvation of the LORD.
We are in the waiting process but we have Hope in the One who holds it all in His hands!! Good things are happening. We had a great talk with her main doctor this morning who gave Kasi an encouraging word about her faith and her testimony to him. He shared how has learned once again to praise God even in the middle of struggles. We then gave him one of our gifts and he read her verse and said, "that is why you have done so well". He sees God's strength in her and is open to talk to us about that. We also told him how when we look at this it is only a moment in the whole big picture of things, and how this really impacts who we are in God, and how we grow into people who better reflect God's face. Praise Him for people seeing that through this!!
Lamentations 3: 22-26
22 Because of the LORD’s great love we are not consumed,
for his compassions never fail.
23 They are new every morning;
great is your faithfulness.
24 I say to myself, “The LORD is my portion;
therefore I will wait for him.”
25 The LORD is good to those whose hope is in him,
to the one who seeks him;
26 it is good to wait quietly
for the salvation of the LORD.
We are in the waiting process but we have Hope in the One who holds it all in His hands!! Good things are happening. We had a great talk with her main doctor this morning who gave Kasi an encouraging word about her faith and her testimony to him. He shared how has learned once again to praise God even in the middle of struggles. We then gave him one of our gifts and he read her verse and said, "that is why you have done so well". He sees God's strength in her and is open to talk to us about that. We also told him how when we look at this it is only a moment in the whole big picture of things, and how this really impacts who we are in God, and how we grow into people who better reflect God's face. Praise Him for people seeing that through this!!
Tuesday, December 7, 2010
numbers up....
Hello to everyone. Today I started out with the verse "this is the day the Lord has made I will rejoice and be glad in it". What a perfect way to start today. Not that today was a good day, but a frustrating day. The verse had to stick in my head from beginning to end because of a few things. I feel like we are going in circles and not making progress up here. I am hoping to be proved wrong the next couple of days again, but with all of Kasi's pain yesterday after she ate and with her numbers going up to 106 today it just seems a little over whelming and confusing. And then on top of that we have a set of doctors saying she can only have no fat foods, and another group saying she can only have no fiber foods. We got a list of no-fat foods here and then the dietitian came up and sat down to show us what off that list Kasi could have. Well, we have 8 things she can eat. Corn flakes, rice crispys, mashed potato, baked potato no skin, grapes, strawberries (if they have them), sliced peaches, and lite and fit strawberry banana yogurt. At least she doesn't need too much time to make up her mind when it comes time to eat :-) Tonight she had mashed potatos. She was happy with that.
Tomorrow will be a better day. I had to get over today, just my attitude and my broken heart of her numbers going up and the fact that I am missing the kids christmas program tonight. Yesterday was Ron's birthday, and Thursday is our anniversary. So many things that are being missed because of being up here in a holding process. I don't know if you can read my heart in this, but today is a day in which we had an over whelming feeling that we really want to go home. I know it will come, and I know that God will give us the strength to hold out strong. I am still in hopes for Monday, I am thinking that will be a miracle at this time, but I do believe in miracles so I am not budging. I also know that I will choose not to be disappointed if we don't go home. Kasi and I are resolved to just try and be home for Christmas. I am just hoping that the decorations will all be up when we get there. It is hard for Ron to get them up being a single parent right now though, so we shall see.
Through all of this we are still amazed at our God and the great things He has done. The doors that have been opened the relationship built and seeds planted. And that is only us up here, we also know that people's lives are being impacted by the this blog. It seems so simple to me writing about our lives, but I know that God's work is being done and if others can see that through us we are happy about that. There is never any question about how big our God is and sometimes we just need a really good reminder and for us that comes in the form of a song. Sometimes it is through scripture, but today, this song. For all of you who have snow and for those who have never put our smallness into the big picture of God's world and God's work, this is for you. We are humbled to know that God, the creator of the universe, knows our name and is using us to further His kingdom. May His name be praised!
Tomorrow will be a better day. I had to get over today, just my attitude and my broken heart of her numbers going up and the fact that I am missing the kids christmas program tonight. Yesterday was Ron's birthday, and Thursday is our anniversary. So many things that are being missed because of being up here in a holding process. I don't know if you can read my heart in this, but today is a day in which we had an over whelming feeling that we really want to go home. I know it will come, and I know that God will give us the strength to hold out strong. I am still in hopes for Monday, I am thinking that will be a miracle at this time, but I do believe in miracles so I am not budging. I also know that I will choose not to be disappointed if we don't go home. Kasi and I are resolved to just try and be home for Christmas. I am just hoping that the decorations will all be up when we get there. It is hard for Ron to get them up being a single parent right now though, so we shall see.
Through all of this we are still amazed at our God and the great things He has done. The doors that have been opened the relationship built and seeds planted. And that is only us up here, we also know that people's lives are being impacted by the this blog. It seems so simple to me writing about our lives, but I know that God's work is being done and if others can see that through us we are happy about that. There is never any question about how big our God is and sometimes we just need a really good reminder and for us that comes in the form of a song. Sometimes it is through scripture, but today, this song. For all of you who have snow and for those who have never put our smallness into the big picture of God's world and God's work, this is for you. We are humbled to know that God, the creator of the universe, knows our name and is using us to further His kingdom. May His name be praised!
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