Stacy here,
I decided it was my time to update and give Jason a break. While Lindsey was at school, we had a Care Conference today with doctors, nurse practitioners, social workers, physical therapists, and nurse manager, and the charge nurse to discuss how to help Lindsey cope with a long-term hospitalization. This is an amazing facility. They have all expressed their sympathy for us and our situation. At this meeting, we found out that the record for being on the Berlin in this hospital is 268 days. We decided to make it a goal to see if we can break the record. It would certainly give us some kind of something to look forward to. A reason to celebrate? Now, if we didn't make it that long, no hearts would be broken. At least it gives us SOMETHING. 268 days would put us to March 15th. So, we are going to start working on decorations for February for her room.
In the meeting we discussed ways they could help Lindsey and our family get out of the room. Especially on the weekends when there is nothing going on. The suggestion was made that we move our room to the end of the hall closer to the sobrato room so the nurse is closer. It was quickly voted that that would not work. I was not going to pack up 6 + months of 'stuff' we have accumulated in that room. It is the biggest room on the floor and we are very happy here. The nurses said they didn't think they could care for anybody else in the room, because it was now 'Lindsey's room'. We all had a good laugh out of that. Jason made the argument for 'nurseless' trips to the sobrato room in the evenings and weekends. We talked about the pros and cons. They understand we are not going to let that one go. Also, at Lindsey's request, we discussed extended excursions, a trip OUT of the hospital to the RMH. Dr Rosenthal is going to answer that question directly to Lindsey. It was a good meeting, no decision really made, but at least we had a chance to voice our concerns. Time will tell if it did any good.
Megan had her first day of basketball tryouts. She came away saying, "I don't know if I will make it on the 'A' team. There are a lot of really good players." There are 18 girls trying out. They are planning on making 2 teams of 9. She has tryouts again tomorrow and then she finds out what team she is on. I am really proud of her for being brave and trying out. She only knows one person trying out, the rest of her friends are doing volleyball. She was sad to have to stop playing volleyball, but is excited to start basketball.
On some real fun positive notes, Shaambak had a biopsy on Tuesday and got a ZERO. Very exciting!! Dina is getting closer to come up to 3 West, but they are waiting for a room to become available. She looks very well.
Here is to 43 more days to break the record! ugh
As always, thanks for the cute comments.
Wednesday, January 30, 2013
Tuesday, January 29, 2013
Jan 29, Tuesday math question
Riddle me this.....
So there are 4 seperate sections of stairs from the 1st floor to 3 West. Each section has 14 steps before coming to a landing and turning.
If my Berlin and I get a good running start from the 3 floor, the Berlin would bounce and flip every 3rd step.
How may flips would I have to make going down the stairs to the 1st floor to keep 'Traeh, Nilreb' from getting tangled up?
It takes 1.5 seconds between bounces,and 3 seconds to round the corners, how long is my life support system unplugged?
How well would I sleep?
Monday, January 28, 2013
Jan 28, Day 223, Monday
Been sitting here for a while trying to come up with something. More of the usual. Monday is blood draw and dressing change, but nothing to report there. All stable there, that's good! Meghan Cleary was here today. She had tests here at Stanford, then spent the day helping Stacy with the kids. She was very helpful and we really appreciate her efforts to be here.
Last night and tonight Stacy and I have had some good visits with our kids. Believe it or not, some (all) of our kids are getting tired of being here (in the hospital). Tired of always coming to Lindsey room, "When can we get out of here", even some tears shed over it. Lindsey is tired of being left alone (which isn't much, but it does happen). When Lindsey has those alone times she starts to get down on herself. Feelings of worthlessness and hopelessness and loneliness. Everyone is trying to keep her spirits up, and frankly, we are all surprised she is doing as well she is. To be stuck in this situation month after month after month with no end it sight has to be tough. The boys are good, just all the energy in the world. Thank goodness Hunter has all-day school. Stacy and I are making it work, but it going to get tough as I get into tax season.
On Wednesday, they (social workers, therapists, nurses, and doctors) have invited us to a 'Care Conference' for Lindsey. This is not a negative thing. They can see the struggles we often have and want to get together to see what can be done to improve Lindsey's overall well being and quality of life. They have said this many times, they are good at taking care of 'sick' kids, but still learning how to take care of 'health' kids (like Lindsey). With the Berlin life support system, Lindsey acts and feels 'healthy', so what can they do to improve her quality of life. I hope it is a positive experience.
Understand, we are all doing well. Kids are active in school, keeping up on their homework, have good friends and leaders, and seem to be making good choices. Lindsey brightens the day for many patients and nurses. Dina looks forward every night to Lindsey's visit and little jokes. Leif tagged along with her to the CVICU for her rounds. Each night Stacy and I thank our Heavenly Father for the blessing in our lives, and pray for the strength we need to keep her spirits up. Each night I look on Facebook and see friends and family living 'normal' lives. Our 'normal' life is unique, someday we will have a new 'normal' (without this ugly chin hair), but not yet.
Last night and tonight Stacy and I have had some good visits with our kids. Believe it or not, some (all) of our kids are getting tired of being here (in the hospital). Tired of always coming to Lindsey room, "When can we get out of here", even some tears shed over it. Lindsey is tired of being left alone (which isn't much, but it does happen). When Lindsey has those alone times she starts to get down on herself. Feelings of worthlessness and hopelessness and loneliness. Everyone is trying to keep her spirits up, and frankly, we are all surprised she is doing as well she is. To be stuck in this situation month after month after month with no end it sight has to be tough. The boys are good, just all the energy in the world. Thank goodness Hunter has all-day school. Stacy and I are making it work, but it going to get tough as I get into tax season.
On Wednesday, they (social workers, therapists, nurses, and doctors) have invited us to a 'Care Conference' for Lindsey. This is not a negative thing. They can see the struggles we often have and want to get together to see what can be done to improve Lindsey's overall well being and quality of life. They have said this many times, they are good at taking care of 'sick' kids, but still learning how to take care of 'health' kids (like Lindsey). With the Berlin life support system, Lindsey acts and feels 'healthy', so what can they do to improve her quality of life. I hope it is a positive experience.
Understand, we are all doing well. Kids are active in school, keeping up on their homework, have good friends and leaders, and seem to be making good choices. Lindsey brightens the day for many patients and nurses. Dina looks forward every night to Lindsey's visit and little jokes. Leif tagged along with her to the CVICU for her rounds. Each night Stacy and I thank our Heavenly Father for the blessing in our lives, and pray for the strength we need to keep her spirits up. Each night I look on Facebook and see friends and family living 'normal' lives. Our 'normal' life is unique, someday we will have a new 'normal' (without this ugly chin hair), but not yet.
Saturday, January 26, 2013
Jan 26, Day 221, Saturday
Saturday,
Lindsey and the boys sure had a good time with the video. We will definitely do that again sometime soon. We came up with a creative math problem, we will run it by Mrs. Molly Smith and the class tomorrow.
As for today, Megan and Sierra did well in their Lightning Basketball game. We made 2 trips to the CVICU to visit Dina. She should be up here to 3 West Monday or Tuesday. We spent some time with Lief and his family flying remote control helicopters. They are another good family waiting for a heart. He is 9, but a lot bigger than Linds. He has been waiting since late November. Liz came over so Stacy and I could go out. We watched Skyfall and went out for dinner. Thanks Liz, very nice of you to watch the crew.
Tonight was Wendy's last day on 3 West. She is returning to southern California to finish school and move on. She was a fun night nurse to have.
Lindsey and the boys sure had a good time with the video. We will definitely do that again sometime soon. We came up with a creative math problem, we will run it by Mrs. Molly Smith and the class tomorrow.
As for today, Megan and Sierra did well in their Lightning Basketball game. We made 2 trips to the CVICU to visit Dina. She should be up here to 3 West Monday or Tuesday. We spent some time with Lief and his family flying remote control helicopters. They are another good family waiting for a heart. He is 9, but a lot bigger than Linds. He has been waiting since late November. Liz came over so Stacy and I could go out. We watched Skyfall and went out for dinner. Thanks Liz, very nice of you to watch the crew.
Tonight was Wendy's last day on 3 West. She is returning to southern California to finish school and move on. She was a fun night nurse to have.
Nurse Wendy and Lindsey after the going away party
Lindsey, Lief (her new friend) and Sunshine, his mother.
Dina, post transplant 3 days.
Friday, January 25, 2013
Thursday, January 24, 2013
Jan 24, Thoughts from the plane
Jason checking in from high above Idaho, Nevada and California at 28,000 ft. Good to be heading back to see the family. Spent the last week gearing up for tax season. We always have a lot of projects that need to be done before we can start into the taxes. It will be pretty excited this year doing taxes remotely from California, but we are prepared (I think/hope?). It is always an emotional adjustment heading back to Palo Alto. I have been pushing hard with work, and now I have to step back, calm down and get back into the 3 West routine.
It was hard to leave the house in Oregon, there is so much room there. I figure we are all going to sleep in a corner of the house when we get back. For the last few nights I would put in an 'According to Jim' episode and watch it while jogging on the treadmill. I could turn it up as loud as I wanted and nobody cared. One of the episodes (The Hole-in-One) I got giggling so hard I about fell off the treadmill! That house is still just a dream, a un-real fantasy, a home (and a pretty cool shop) that existed before all this.
It has been such a honor and humbling experience to join so many people in fasting and prayer. Growing up you never think an experience like this would ever happen to you or your family. It's always those 'other people' you see on Dateline that have the crazy problems. I never thought I would appreciate and need the thoughts, prayers, fasting and support of so many people from around the world. These last few days has been a real strength to Stacy and I. We read and draw strength from each comment, letter, package, gift, phone call, joke, and other support we receive. Thank you for joining with us in this special day of prayer and fasting for our Princess. I know God, our Heavenly Father, heard and will answer every one of our prayers.
Justin, my brother, stopped by the office today. He was saying after a day of prayer and fasting with so many people, you just kinda expect her transplant will happen any day. It is wonderful to have that kind of hope and faith. Honestly, I struggle with that. There has been several times in the past (last December especially) when Stacy and I both thought we were there and the transplant would happen any day. I hope it does happen any day, but I don't or can't expect it to happen. I/we have to stay strong for our daughter if it doesn't happen. It will happen when the perfect heart is prepared. I must have 'Faith in His Timing'.
As for Lindsey, not much to report from Stacy. No news is no news, right? Stacy says it is the same as last week, last month, or last fall, and that is wonderful. The only real issue we have to address (right now) is letting her go to the Sobrato Room without a nurse. This is a great problem to have, but an issue I am going to continue to pursue.
While I was home, I saw the 5 beautiful quilts made for our children. Each one is unique and very thought out. They are very cute and the kids will love them. As I have said before, we are grateful for the countless acts of kindness shown on our behalf.
Need to thank my cousin Theresa and her husband Calvin, she stayed here with my family so I could work back in Oregon. They have 4 boys all very active and she stayed here to help. Thanks to her and Calvin for helping out. I'm wishing we could have had Theresa do one of our blog updates. She is one of those, 'Say it how she see's it' kinda people. It would have been a good one.
Last of all, I have an pretty hot and amazing wife. Even though we have hardly slept in the same bed (I'm trying harder these days to not complain about that), I truly feel closer to her now more than ever. She is working so hard to keep our little family going, supporting the kids in school and sports, keeping track of all the med's we have floating around the RMH, and keeping Lindsey's spirits up. She even wants to work one night a week to keep her license up. I have to say, she is one amazing woman I call my wife.
It was hard to leave the house in Oregon, there is so much room there. I figure we are all going to sleep in a corner of the house when we get back. For the last few nights I would put in an 'According to Jim' episode and watch it while jogging on the treadmill. I could turn it up as loud as I wanted and nobody cared. One of the episodes (The Hole-in-One) I got giggling so hard I about fell off the treadmill! That house is still just a dream, a un-real fantasy, a home (and a pretty cool shop) that existed before all this.
It has been such a honor and humbling experience to join so many people in fasting and prayer. Growing up you never think an experience like this would ever happen to you or your family. It's always those 'other people' you see on Dateline that have the crazy problems. I never thought I would appreciate and need the thoughts, prayers, fasting and support of so many people from around the world. These last few days has been a real strength to Stacy and I. We read and draw strength from each comment, letter, package, gift, phone call, joke, and other support we receive. Thank you for joining with us in this special day of prayer and fasting for our Princess. I know God, our Heavenly Father, heard and will answer every one of our prayers.
Justin, my brother, stopped by the office today. He was saying after a day of prayer and fasting with so many people, you just kinda expect her transplant will happen any day. It is wonderful to have that kind of hope and faith. Honestly, I struggle with that. There has been several times in the past (last December especially) when Stacy and I both thought we were there and the transplant would happen any day. I hope it does happen any day, but I don't or can't expect it to happen. I/we have to stay strong for our daughter if it doesn't happen. It will happen when the perfect heart is prepared. I must have 'Faith in His Timing'.
As for Lindsey, not much to report from Stacy. No news is no news, right? Stacy says it is the same as last week, last month, or last fall, and that is wonderful. The only real issue we have to address (right now) is letting her go to the Sobrato Room without a nurse. This is a great problem to have, but an issue I am going to continue to pursue.
While I was home, I saw the 5 beautiful quilts made for our children. Each one is unique and very thought out. They are very cute and the kids will love them. As I have said before, we are grateful for the countless acts of kindness shown on our behalf.
Need to thank my cousin Theresa and her husband Calvin, she stayed here with my family so I could work back in Oregon. They have 4 boys all very active and she stayed here to help. Thanks to her and Calvin for helping out. I'm wishing we could have had Theresa do one of our blog updates. She is one of those, 'Say it how she see's it' kinda people. It would have been a good one.
Last of all, I have an pretty hot and amazing wife. Even though we have hardly slept in the same bed (I'm trying harder these days to not complain about that), I truly feel closer to her now more than ever. She is working so hard to keep our little family going, supporting the kids in school and sports, keeping track of all the med's we have floating around the RMH, and keeping Lindsey's spirits up. She even wants to work one night a week to keep her license up. I have to say, she is one amazing woman I call my wife.
Wednesday, January 23, 2013
Jan 23, Fasting for Lindsey - Humbling
Our dear friend Dinalyn, finally went in to receive her new heart at 4:00 this morning. They have had a very trying 24 + hours. The doctor came and told them that they had an offer on Monday evening at 5 pm. At 8:30 that evening they were still waiting to hear a time for surgery and to know if it was truly a good heart. Yesterday, Lindsey and I went down to see Dina before school, and she still had not gotten any word yet if it was or was not happening. Finally at about 8 last night they told her she would go into surgery at 4 am this morning. After waiting almost 36 hours for an absolute answer, Dina went to surgery. She came out at 1 this afternoon. She looks great and was on the ventilator, but awake enough to wave at Lindsey this evening. I asked the doctor to make sure that they were 100% sure before telling us of any offer. We could not handle that kind of wait, or information and have it not happen. It does happens from time to time. They have an offer, get the child ready for surgery, they see the donor heart, then decide it is not a good heart and the surgery is canceled. As our dear friend Shawn Stockwell knows. We are so relieved and happy for Dina and her family.
Tonight has been VERY humbling. So many people showed up tonight to start our fast and many others in Oregon started theirs earlier today. I thank EVERYONE for their selflessness and kindness in our behalf. Thank you for sacrificing a day of eating to pray with us for Lindsey. I am so touched and in awe. Tonight when Lindsey and I were saying our prayers, she started crying. When I asked her what was wrong, she said, "My heart is so touched that so many people are praying for me." In behalf of ALL of us, thank you! I am so greatful for this trial in our life. Without it we would never have been able to see the kindness and generosity of so many people. I wish there was a word stronger in the English language than "thank you" to express how much gratitude we are feeling. But, until then, thank you!
Tonight has been VERY humbling. So many people showed up tonight to start our fast and many others in Oregon started theirs earlier today. I thank EVERYONE for their selflessness and kindness in our behalf. Thank you for sacrificing a day of eating to pray with us for Lindsey. I am so touched and in awe. Tonight when Lindsey and I were saying our prayers, she started crying. When I asked her what was wrong, she said, "My heart is so touched that so many people are praying for me." In behalf of ALL of us, thank you! I am so greatful for this trial in our life. Without it we would never have been able to see the kindness and generosity of so many people. I wish there was a word stronger in the English language than "thank you" to express how much gratitude we are feeling. But, until then, thank you!
Dina after she just found out there was an offer. Monday evening.
Sierra brought our Wii back from Oregon. Notice how the kids "interact" so much better with each other.
Lindsey and Dina Tuesday night, when the time had been given.
Dina and her sweet mom Elisa and Lindsey.
Monday, January 21, 2013
Jan 21, Checking in from Oregon & Dina's Day
Jason here. Wanted to check in from Oregon. It has been nice coming home for a bit. Good to see our home is still standing. Like all the Oregonians have said, it is cold here. Highs in the 20's and low around zero. I guess it has been like this for most of January.
Sierra had so much fun coming home. On Saturday we went to the junior high girls basketball game. When we walked in she was swarmed with friends. At halftime, a few girls pulled her onto the court and the whole team came running a gave her a huge hug. It was pretty special. It was good to see so many of our friends and neighbors. Sierra went skiing with Aunt Emily and then spent the rest of the day with her good friend Lauren. Church was nice. Again you would have thought Sierra was a celebrity when she walked in with her high heals!
That evening Sierra, Grandpa, and I went out to feed cows. It has been too long since I have been able to do that with any of my kids. No joke, it feels so good to get out with WARM clothes on in zero temperatures and feed cows with Sierra. There is just something about it. Sunday evening Jake and Wendy, Justin and Emily, and Mom and Dad, and all the kids got together at our house for dinner. For a brief moment everything felt normal except one thing.... I know I have mentioned this before, but it feels so unreal to be in the house. The home represents a time before our lives changed. Still feels like a dream to be there. None of us know when we will be home. It is still months away, at best.
This morning Sierra and my Mom left at 4:30am for Boise. Sierra caught a flight back to our home in Palo Alto. Thanks to Michelle for picking her up. As much as she whats to be here in Oregon, being in California is the right place to be. It was hard to see her go and be left in that quiet HUGE home. There was a time I didn't think it was that big, but that has all changed. As for me, I am working like crazy for prepare for tax season. I will head back on Thursday.
Words can't explain how thankful I am to Theresa, Calvin and their boys Royce, Chase, Zack and Cody for their visit to California. Theresa, thank you so much for being there and helping this week while I am working. I have some pretty neat cousins. Thanks!
Haven't talked to my wife much today but did get a text message around 5:00 pm. Dinalyn got the call. We are really excited for her. She is the teenager from Hawaii who has been on the heart mate (a smaller Berlin type machine for bigger kids). She has been listed since late October and has been in the ICU fighting irregular heart rhythms and other compilations. She was the one Lindsey would go visit everyday. We are genuinely excited for them..... But a little girl took it pretty hard..... Her and her tender mother cried together. Her Daddy's heart just aches for his Princess. She has now seen 5 transplants come and go. We understand it's a matching process and her day is coming. It's just hard sometimes. I sure wish I could be there to hug Dina and neat parents. Then hug our Princess. Her day will come... but not today.
Speaking of, we would like to share a special invitation to anyone and everyone who would like to participate. On Wednesday, the 23rd, our Palo Alto and Baker Valley church wards are holding a special day of fasting and prayer for Lindsey. If anyone would like to join us, regardless of your denomination (and I mean that), I personally would greatly appreciate it. We are fasting and praying specifically that her perfect heart has been prepared. I know God hears all our prayers. I know her day is coming. She is so strong, but it's tough. I know the tough road she has been on and will have in front of her. I have faith in my Lord Jesus Christ and in his timing. I know he knows exactly what she is going through. I just pray and fast that her day is coming soon, for her to be able to move on and receive that life saving transplant. I pray every day for that donor family. God please, bless them.
Sierra had so much fun coming home. On Saturday we went to the junior high girls basketball game. When we walked in she was swarmed with friends. At halftime, a few girls pulled her onto the court and the whole team came running a gave her a huge hug. It was pretty special. It was good to see so many of our friends and neighbors. Sierra went skiing with Aunt Emily and then spent the rest of the day with her good friend Lauren. Church was nice. Again you would have thought Sierra was a celebrity when she walked in with her high heals!
That evening Sierra, Grandpa, and I went out to feed cows. It has been too long since I have been able to do that with any of my kids. No joke, it feels so good to get out with WARM clothes on in zero temperatures and feed cows with Sierra. There is just something about it. Sunday evening Jake and Wendy, Justin and Emily, and Mom and Dad, and all the kids got together at our house for dinner. For a brief moment everything felt normal except one thing.... I know I have mentioned this before, but it feels so unreal to be in the house. The home represents a time before our lives changed. Still feels like a dream to be there. None of us know when we will be home. It is still months away, at best.
This morning Sierra and my Mom left at 4:30am for Boise. Sierra caught a flight back to our home in Palo Alto. Thanks to Michelle for picking her up. As much as she whats to be here in Oregon, being in California is the right place to be. It was hard to see her go and be left in that quiet HUGE home. There was a time I didn't think it was that big, but that has all changed. As for me, I am working like crazy for prepare for tax season. I will head back on Thursday.
Words can't explain how thankful I am to Theresa, Calvin and their boys Royce, Chase, Zack and Cody for their visit to California. Theresa, thank you so much for being there and helping this week while I am working. I have some pretty neat cousins. Thanks!
Haven't talked to my wife much today but did get a text message around 5:00 pm. Dinalyn got the call. We are really excited for her. She is the teenager from Hawaii who has been on the heart mate (a smaller Berlin type machine for bigger kids). She has been listed since late October and has been in the ICU fighting irregular heart rhythms and other compilations. She was the one Lindsey would go visit everyday. We are genuinely excited for them..... But a little girl took it pretty hard..... Her and her tender mother cried together. Her Daddy's heart just aches for his Princess. She has now seen 5 transplants come and go. We understand it's a matching process and her day is coming. It's just hard sometimes. I sure wish I could be there to hug Dina and neat parents. Then hug our Princess. Her day will come... but not today.
Speaking of, we would like to share a special invitation to anyone and everyone who would like to participate. On Wednesday, the 23rd, our Palo Alto and Baker Valley church wards are holding a special day of fasting and prayer for Lindsey. If anyone would like to join us, regardless of your denomination (and I mean that), I personally would greatly appreciate it. We are fasting and praying specifically that her perfect heart has been prepared. I know God hears all our prayers. I know her day is coming. She is so strong, but it's tough. I know the tough road she has been on and will have in front of her. I have faith in my Lord Jesus Christ and in his timing. I know he knows exactly what she is going through. I just pray and fast that her day is coming soon, for her to be able to move on and receive that life saving transplant. I pray every day for that donor family. God please, bless them.
A beautiful sun rise
Powder Valley gym
The junior high team with Sierra in the middle
Ruth Friboes, a strength to our family
The hallway in North Powder's new building.
Sunday, January 20, 2013
Jan 20, Sunday, Fun with the Rasmussens
As you probably know, Jason is gone and I don't update as frequently as he. I apologize! There was no heart or anything like that. We had a fun day yesterday. Theresa and her husband Calvin and their four boys, Royce, Chase, Zack and Cody, came to visit. Chase did an amazing Eagle scout project. He made a whole bunch of kits for the Ronald McDonald cart that comes around the hospital here every Tuesday and Thursday. We have benefited greatly from this cart. They bring snacks and drinks for everyone and then they have little gift packets for all the children. Chase decided to create these kits for the cart and donate them to this Ronald McDonald house in honor of Lindsey. It was VERY nice of him. They delivered the packages Saturday and we got to spend the weekend with them. Hunter and Gage were in BOY heaven. They loved being surrounded by boys for once, instead of girls. They are some great boys and we were very excited to have them here with us. Theresa did a great job of bringing new crafts to do. As Megan said today, "Thank you for bringing something new. We were really getting tired of the same old, same old." They taught us how to make some fun bracelets. Already we have a list of people we want to make them for.
Today, we went to church and then our dear friend Michelle Hansen and her family brought dinner over and we all ate in the Sobrato room. It was really nice to visit and have a nice evening together. Theresa brought some tiles and taught the kids a really cute finger painting project. The kids all loved it!
Jason is getting use to the icy roads and the very cold weather, and we are enjoying the very nice warm sunny weather here. Sierra comes back tomorrow and Jason will return on Thursday, unless we give him a reason to come back early. Theresa is kindly staying behind as her family heads back to Vegas tomorrow. We are so blessed to be surrounded by so many kind and wonderful people in our lives!
Today, we went to church and then our dear friend Michelle Hansen and her family brought dinner over and we all ate in the Sobrato room. It was really nice to visit and have a nice evening together. Theresa brought some tiles and taught the kids a really cute finger painting project. The kids all loved it!
Jason is getting use to the icy roads and the very cold weather, and we are enjoying the very nice warm sunny weather here. Sierra comes back tomorrow and Jason will return on Thursday, unless we give him a reason to come back early. Theresa is kindly staying behind as her family heads back to Vegas tomorrow. We are so blessed to be surrounded by so many kind and wonderful people in our lives!
Our tile projects in the Sobrato room.
Chase making his delivery to the RMH.
Zack, Chase and Royce getting ready for the drop off.
Friday, January 18, 2013
Jan 18, Jason and Sierra are off
Jason and Sierra left at 7 this morning and flew back home to Oregon. Sierra had an appointment with her orthodontist. He came into his office, just for her. Very nice of him! Jason and Sierra landed in a booming 9 degree, sunny day. Here we enjoyed a beautiful mid 60's sunny day. It really felt like spring. My seasons are so messed up here, BUT I am not complaining. The weather is very enjoyable.
Okay Molly, here are your answers Lindsey worked out (with a little help).
If you go up 5 stairs, then 6 stairs then 6 more stairs, (11+6=17, 17+17=34) 34 stairs in a trip up. If you go up and down the stairs 4 times daily, (34+34=68, 68x4=272) you walk 272 stairs a day. Lindsey thought that was a lot of stairs!
We are going on a hunt tomorrow to make up some more. Thanks for the challenge! Theresa, Calvin and their family are on their way from Vegas. Fun times tomorrow. Here is hoping Lindsey has a peaceful night.
Okay Molly, here are your answers Lindsey worked out (with a little help).
If you go up 5 stairs, then 6 stairs then 6 more stairs, (11+6=17, 17+17=34) 34 stairs in a trip up. If you go up and down the stairs 4 times daily, (34+34=68, 68x4=272) you walk 272 stairs a day. Lindsey thought that was a lot of stairs!
- If each stair is 7 inches tall, (272x7=1904) you go 1904 inches a day. Which, would be (1904/12=159) 159 feet. Whew!!
We are going on a hunt tomorrow to make up some more. Thanks for the challenge! Theresa, Calvin and their family are on their way from Vegas. Fun times tomorrow. Here is hoping Lindsey has a peaceful night.
Thursday, January 17, 2013
Jan 17, Day 212, Thursday
Jason here, really not much. Today I watched an 8 hour online webinar. It was a tax update course for the upcoming tax season. This year is sure going to be interesting doing tax in a remote location. I think we are all set up to make it work. I just know when we get into the heat of tax season the 'call' is going to come. Now that is going to be interesting.
Sierra and I fly home tomorrow. She is going to the orthodontist in Ontario then spend the weekend home. She will be catching a 9:00 am flight out of Boise Monday morning. I will be staying until next Thursday. Sorry she couldn't be there for a day of NP school. She is really starting to do well at Jordan. Not that she doesn't want to be home, but for now, she is making it work. We are all making it work.
As for Linds, it's another day. She has been doing great and has had a pretty good attitude. It is sure good for her to visit her 'heart' friends in the CVICU. It gives her and them something to look forward to.
We have a wall back home with our kids' height and weight on it. Each year we mark how tall they have grown. Since we are not there, we did our measurements here and Sierra and I will record it on the wall back home. It will be interesting to see the change in our kids. Megan is now 3 inches taller than Sierra. It's just the way it is, Sierra hates it. Hunter is an inch taller than Lindsey but a couple of pounds lighter. And Gage is bringing up the rear.
That's it from Palo Alto. Hopefully Brad Allen will need to fly me back to Calif earlier than my scheduled flight back on Thursday.
Sierra and I fly home tomorrow. She is going to the orthodontist in Ontario then spend the weekend home. She will be catching a 9:00 am flight out of Boise Monday morning. I will be staying until next Thursday. Sorry she couldn't be there for a day of NP school. She is really starting to do well at Jordan. Not that she doesn't want to be home, but for now, she is making it work. We are all making it work.
As for Linds, it's another day. She has been doing great and has had a pretty good attitude. It is sure good for her to visit her 'heart' friends in the CVICU. It gives her and them something to look forward to.
We have a wall back home with our kids' height and weight on it. Each year we mark how tall they have grown. Since we are not there, we did our measurements here and Sierra and I will record it on the wall back home. It will be interesting to see the change in our kids. Megan is now 3 inches taller than Sierra. It's just the way it is, Sierra hates it. Hunter is an inch taller than Lindsey but a couple of pounds lighter. And Gage is bringing up the rear.
That's it from Palo Alto. Hopefully Brad Allen will need to fly me back to Calif earlier than my scheduled flight back on Thursday.
Wednesday, January 16, 2013
Jan 16, To Do's lists and quiet moments
Stacy here.
Every now and then, I forget a few things (only sometimes). Scheduling of kids activities, a blood draw for Sierra, ordering kid's medicine on time, etc. So I have come to the conclusion, that I HAVE to make "to do" lists. This may not come as rocket science to most of you. I did them at home, but fell out of the habit when there wasn't much "to do." Today I made my first list, as I did I started remembering all the scheduling items we had with Sierra, fresh transplant. It made me nervous for Lindsey's turn and trying to juggle it all. I decided that I am going to enjoy this waiting moment more. Our lives are going to be really crazy post transplant. Biopsies, clinics, blood draws, physical therapy and anything else that may come up unexpected. Adding Sierra's monthly IVIG infusions, clinic and biopsy and Gage's appointments. I think I am okay waiting a little longer. I am sooo grateful for this quiet time in our lives, that I can appreciate each of my children and the blessings we have. The kids have all stepped up to the plate through this experience. I am so very proud of them.
Jason and Sierra leave on Friday. Sierra will return on Monday and Jason will stay until next Thursday. Jason really needs the time at home to get himself put together for tax season. His cousin Theresa will be staying with me, which is very nice of her. Life still goes on when Jason is gone. Basketball and volleyball practices, Sierra heart clinic, and me staying the nights with Lindsey. So here is to enjoying the 'quiet' moments.
Jason here.
Not sure what planet my dear wife is living on. Quiet moments? She is able to handle so much. Guys can only handle one thing at a time, and she is over there juggling the load. I love that woman. If she has a quiet moment maybe she come over here and spend it with her husband! Lindsey finished working up the answers to Mrs. Smith's math questions. She wanted to make sure I put that in here. Good night.
Every now and then, I forget a few things (only sometimes). Scheduling of kids activities, a blood draw for Sierra, ordering kid's medicine on time, etc. So I have come to the conclusion, that I HAVE to make "to do" lists. This may not come as rocket science to most of you. I did them at home, but fell out of the habit when there wasn't much "to do." Today I made my first list, as I did I started remembering all the scheduling items we had with Sierra, fresh transplant. It made me nervous for Lindsey's turn and trying to juggle it all. I decided that I am going to enjoy this waiting moment more. Our lives are going to be really crazy post transplant. Biopsies, clinics, blood draws, physical therapy and anything else that may come up unexpected. Adding Sierra's monthly IVIG infusions, clinic and biopsy and Gage's appointments. I think I am okay waiting a little longer. I am sooo grateful for this quiet time in our lives, that I can appreciate each of my children and the blessings we have. The kids have all stepped up to the plate through this experience. I am so very proud of them.
Jason and Sierra leave on Friday. Sierra will return on Monday and Jason will stay until next Thursday. Jason really needs the time at home to get himself put together for tax season. His cousin Theresa will be staying with me, which is very nice of her. Life still goes on when Jason is gone. Basketball and volleyball practices, Sierra heart clinic, and me staying the nights with Lindsey. So here is to enjoying the 'quiet' moments.
Jason here.
Not sure what planet my dear wife is living on. Quiet moments? She is able to handle so much. Guys can only handle one thing at a time, and she is over there juggling the load. I love that woman. If she has a quiet moment maybe she come over here and spend it with her husband! Lindsey finished working up the answers to Mrs. Smith's math questions. She wanted to make sure I put that in here. Good night.
Tuesday, January 15, 2013
Jan 15, Day 210, CVICU Visitors
Stacy here.
For months now, Lindsey takes a nightly walk to the CVICU. To see other kids we know on the Berlin and the new friends we have made. The doctors laugh at the thought of the "Berlin club". They think Lindsey would make a great President, as she goes on her "rounds" and visits all of the patients on assistive devices. Some of the people we would go and see was Shaambak, who had his first biopsy today and may go to the RMH for the first time in 7 months tomorrow. He is doing very well since his transplant 2 weeks ago. We have also been visiting our friend Dinalyn from Hawaii. She is on a Heart Mate and doing well, but is in the CVICU for funky rhythms that they want to keep an eye on. The other Berlin buddy we like to go visit is an adorable, almost 2 year old, Rogerlio. He has a double Berlin and has been on the device for 2 months now. He is absolutely adorable and blows kisses every time we see him.
Today and yesterday, Dinalyn and Rogerlio's family have surprised us by coming and visiting us instead. It has been a very fun treat. We just love these people!
Thank you for the math problems Molly, we are putting Lindsey to work on them. We will have her work them out then see if her teacher, Kevin, can get them right. What a great new thing for us to look for. I am sure we can come up with some great math problems!
There is not much more to report. Megan had volleyball practice and then basketball practice. Sierra had basketball practice and Hunter and Gage went to their friend's, Nate and Ruby, to play. Jason is feeling the stress of tax season coming up, but is working hard at making things work here as best he can. He is such an amazing husband and dad. He sure sacrifices a lot for us. As always, things will work out how and in the time they are supposed to. However, April 16th will probably be more welcomed than years past.
For months now, Lindsey takes a nightly walk to the CVICU. To see other kids we know on the Berlin and the new friends we have made. The doctors laugh at the thought of the "Berlin club". They think Lindsey would make a great President, as she goes on her "rounds" and visits all of the patients on assistive devices. Some of the people we would go and see was Shaambak, who had his first biopsy today and may go to the RMH for the first time in 7 months tomorrow. He is doing very well since his transplant 2 weeks ago. We have also been visiting our friend Dinalyn from Hawaii. She is on a Heart Mate and doing well, but is in the CVICU for funky rhythms that they want to keep an eye on. The other Berlin buddy we like to go visit is an adorable, almost 2 year old, Rogerlio. He has a double Berlin and has been on the device for 2 months now. He is absolutely adorable and blows kisses every time we see him.
Today and yesterday, Dinalyn and Rogerlio's family have surprised us by coming and visiting us instead. It has been a very fun treat. We just love these people!
Thank you for the math problems Molly, we are putting Lindsey to work on them. We will have her work them out then see if her teacher, Kevin, can get them right. What a great new thing for us to look for. I am sure we can come up with some great math problems!
There is not much more to report. Megan had volleyball practice and then basketball practice. Sierra had basketball practice and Hunter and Gage went to their friend's, Nate and Ruby, to play. Jason is feeling the stress of tax season coming up, but is working hard at making things work here as best he can. He is such an amazing husband and dad. He sure sacrifices a lot for us. As always, things will work out how and in the time they are supposed to. However, April 16th will probably be more welcomed than years past.
Monday, January 14, 2013
Jan 14, No more pokes (for now)
All good stuff today. Her INR, (blood thinning level) is finally where they want it, so no more lovinox shots! Yahoo! The midnight poke was become very un-fun. Also her cannula site looked okay, so no dressing change for a week. So it was a good day. And if she is having a good day, then we are all having a good day.
The office I am using here in Palo Alto is working very well. (Thanks Shawn) I can log into our Baker office and work as though I was sitting there in Baker, only it is 55 degrees here not 15. We do miss the wintery weather.
The Falsev's had a fun time in San Francisco. They came by tonight for a nice visit. Sure nice of them to come all his way.
And Carol, her medium was on this white thick paper stuff, and I thought the resilence was very quieting, wouldn't you agree? (Stacy, I and the kids really do enjoy the comments)
The office I am using here in Palo Alto is working very well. (Thanks Shawn) I can log into our Baker office and work as though I was sitting there in Baker, only it is 55 degrees here not 15. We do miss the wintery weather.
The Falsev's had a fun time in San Francisco. They came by tonight for a nice visit. Sure nice of them to come all his way.
And Carol, her medium was on this white thick paper stuff, and I thought the resilence was very quieting, wouldn't you agree? (Stacy, I and the kids really do enjoy the comments)
Tracy and Wendy Falsev and 3 of their 5 daughters, Brooklyn, Kinley and Mailee.
Sunday, January 13, 2013
Jan 13, Sunday, Dr Rounds
Lindsey had a fun day with Denise, her nurse. More of the usual; playroom, painted a craft, walks, hangin' out at the nurses station, etc. Her INR blood level is still low, so more lovenox shots. She really is getting tired of them. No good explanation why the level was so low. They have increased the dose, but it is still not enough for proper blood thinning. So she will get another shot tonight and then her usual Monday blood draw tomorrow. She also will have her weekly dressing change. Hope the cannula's are hanging in there.
This morning while Lindsey and I were in the bathroom washing her hair, the team came in for rounds. We never heard them come in, so they started dinkin' around. They quietly took a hilarious picture and saved it to Lindsey's ipad as her wallpaper. We never knew they came in until Lindsey was turning on some music and saw the picture. It was really funny. There is so little to talk about with her (INR being the only thing) they took the time to have a little fun. Sure made Lindsey feel good.
We had an enjoyable day at Church. This evening Stacy's friend from high school and her family came to visit. Wendy and Tracy Falslev and three of their daughters drove over from Logan Utah. They are here for a few days and will head back on Wednesday. Very nice of them.
Busy week ahead, then Sierra and I fly home on Friday.
Honestly, I am surprised anyone reads our blogs. Seems like we are living the same ole day over and over and over and over and over and..............
This morning while Lindsey and I were in the bathroom washing her hair, the team came in for rounds. We never heard them come in, so they started dinkin' around. They quietly took a hilarious picture and saved it to Lindsey's ipad as her wallpaper. We never knew they came in until Lindsey was turning on some music and saw the picture. It was really funny. There is so little to talk about with her (INR being the only thing) they took the time to have a little fun. Sure made Lindsey feel good.
We had an enjoyable day at Church. This evening Stacy's friend from high school and her family came to visit. Wendy and Tracy Falslev and three of their daughters drove over from Logan Utah. They are here for a few days and will head back on Wednesday. Very nice of them.
Busy week ahead, then Sierra and I fly home on Friday.
Honestly, I am surprised anyone reads our blogs. Seems like we are living the same ole day over and over and over and over and over and..............
NP (Jessica), MD (Chen), NP (Bambi), Nurse (Denise), and Charge Nurse (Joanne).
A painting Lindsey was very proud of. She wanted me to post this painting on the blog.
Lindsey re-working the board to try and get her favorite nurses. It's kinda funny, it is getting to the point where she has many 'favorite' nurses. It's the world she lives in.
Saturday, January 12, 2013
Jan 12, A day with Jennifer Shek
Sierra and Megan did good at the Lightning basketball game. Shawn and Trista Stockwell came to watch the game. That was very nice of them. They flew out to Alaska today after a few days of tests, biopsy and IVIG. They are scheduled to come back in 2 months. Hopefully our status has changed for the better by then.
Jennifer Shek, Sierra's post-transplant coordinator for the past 6 years, came by and took Sierra out for the afternoon. That was her only purpose of visiting today was to take Sierra out and have a girls day with her. It really made Sierra feel special. Jennifer helped us through many years of stressful biopsies, biopsy results, hospital admits, medicine adjustments and reactions, and the overall stress of caring for a child with a transplant. She has now moved on from this job, but wanted to spend the day with Sierra. Thank-you.
We don't mention it much, but Gage is doing well. He takes 4 med's and 1 vitamin supplement. Eats okay, not great, and his energy comes and goes. But for the most part, he is doing great.
Took the boys to a primary activity at the church. Sure are a lot of good people here.
Stacy and I struggle with Saturday activities. Saturdays are made for getting out and doing things; home projects, 'honey-does', shopping, fun time, sporting events, exercise, getting fire wood, etc. But everyone of those means we are leaving Lindsey. It's the same dilemma we have faced for months. But as we are becoming more involved here through school, church, activities, work, etc, the pull to do things away from Lindsey increases. People ask us what fun activities we have planned for the weekend. Well...... playroom, walks, games, Sobrato room, fountain, gift shop, wacky-6, etc. or, we leave our Princess and go do something. I understand there needs to be a balance here, and Lindsey is doing better (most of the time) at being left by herself. She knows she is waiting for the perfect match and could be looking at months to come. Our faith and hope is strong, it will happen.
On a lighter note, the chin hair is getting ugly and hard to manage. Stacy braided it today, but most of the time I fold it up into this doubled over pony tail thing. (scary, huh!?) Whatever, we are all having fun with it.
Jennifer Shek, Sierra's post-transplant coordinator for the past 6 years, came by and took Sierra out for the afternoon. That was her only purpose of visiting today was to take Sierra out and have a girls day with her. It really made Sierra feel special. Jennifer helped us through many years of stressful biopsies, biopsy results, hospital admits, medicine adjustments and reactions, and the overall stress of caring for a child with a transplant. She has now moved on from this job, but wanted to spend the day with Sierra. Thank-you.
We don't mention it much, but Gage is doing well. He takes 4 med's and 1 vitamin supplement. Eats okay, not great, and his energy comes and goes. But for the most part, he is doing great.
Took the boys to a primary activity at the church. Sure are a lot of good people here.
Stacy and I struggle with Saturday activities. Saturdays are made for getting out and doing things; home projects, 'honey-does', shopping, fun time, sporting events, exercise, getting fire wood, etc. But everyone of those means we are leaving Lindsey. It's the same dilemma we have faced for months. But as we are becoming more involved here through school, church, activities, work, etc, the pull to do things away from Lindsey increases. People ask us what fun activities we have planned for the weekend. Well...... playroom, walks, games, Sobrato room, fountain, gift shop, wacky-6, etc. or, we leave our Princess and go do something. I understand there needs to be a balance here, and Lindsey is doing better (most of the time) at being left by herself. She knows she is waiting for the perfect match and could be looking at months to come. Our faith and hope is strong, it will happen.
On a lighter note, the chin hair is getting ugly and hard to manage. Stacy braided it today, but most of the time I fold it up into this doubled over pony tail thing. (scary, huh!?) Whatever, we are all having fun with it.
Jennifer Shek and Sierra heading out.
The girls with Shawn at their basketball game.
It may be interesting to see how their friendships develop down the road, stay tune.
Hunter serving up a healthy snack to his new Sunday school teacher.
It looked like something off of the movie 'Elf'. And Brian Zenger ate it (not all of it).
Lindsey was excited about her new mask. There was nothing wrong with the other ones, she just thinks these are more comfortable. No joke, she loves it! There is such a tight seal around her mouth, you can hardly hear her, so she has to yell to talk. We all agree she is now ready for a nuclear fall out. But hey, if she loves it, we love it!
Jan 11, Friday Night at the Saddle Rack
Kids were glad to see Friday roll around, and so was their Mom and Dad. Around 5:30 Lindsey's friend Collette came by to visit her. She and her mom brought a cute gift and stayed for a bit. She is a very nice cute friend to Lindsey. Thanks Collette for coming by!
At 6:00 Sondra Zenger came by with Allie Zenger and Sadie Perry. They stayed here while Stacy and I went out. We went over to Fremont on the east side of the bay (heavy traffic), went to dinner, then went country dancing at the Saddle Rack. We had so much fun. There was all types there, and I mean ALL. The ages ranged from 21 to about 80. We had a blast. Lots of people, good music, good dance floor, and a hot date! Our favorite was this old guy, not younger than 80 dancing up a storm. I thought he was dancing with his granddaughter, but he wasn't. He was just going around asking the cute young ladies to dance. I had to keep a close eye on my woman. It was just a lot of fun for us. That was very nice of Sondra to watch the gang so Stacy and I could get out.Thanks Sondra.
Lindsey just received her midnight Lovenox shots, (grrrr) Sierra has a blood draw at 7:20am, and the girls have a Lighting basketball game. I think we are almost to busy for a transplant......
At 6:00 Sondra Zenger came by with Allie Zenger and Sadie Perry. They stayed here while Stacy and I went out. We went over to Fremont on the east side of the bay (heavy traffic), went to dinner, then went country dancing at the Saddle Rack. We had so much fun. There was all types there, and I mean ALL. The ages ranged from 21 to about 80. We had a blast. Lots of people, good music, good dance floor, and a hot date! Our favorite was this old guy, not younger than 80 dancing up a storm. I thought he was dancing with his granddaughter, but he wasn't. He was just going around asking the cute young ladies to dance. I had to keep a close eye on my woman. It was just a lot of fun for us. That was very nice of Sondra to watch the gang so Stacy and I could get out.Thanks Sondra.
Lindsey just received her midnight Lovenox shots, (grrrr) Sierra has a blood draw at 7:20am, and the girls have a Lighting basketball game. I think we are almost to busy for a transplant......
Lindsey and Collette
The 'One'
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