10:30 pm.
Another boring day today as far as any changes to report. They made no changes with anything on Lindsey today and her blood count is slowly rising. Today it was 28, yeahhh! Anything above 32 would be wonderful. Today we went for a walk, and finished a craft she was working on. Watched a little Olympics, then went to physical therapy. She did well there and played some games with the girls in there (who are absolutely amazing people). On the way back from physical therapy we stopped in at the playroom, and did a little "stamping" craft (Wendy you would be proud). On our way out of the playroom, the Wii happened to open up. Lindsey and I decided to play Just Dance 2. It was pretty funny watching her try to dance with her Berlin. She did a great job! The nurse today said it was the highlight of her day and she can't wait to do it again tomorrow. She is going to join in with us. We closed our day with an evening walk to the CVICU to go see our friends the Thomas's. Then back to 3 west to watch the rest of Pride an Prejudice, and now she is sleeping soundly. A GREAT DAY!
My sister Kelly on the other hand, did not have quite the same day. She stayed at the RMH with Gage and Megan and her 4 month old Easton. They were going to the grocery store to get a few things to make some goodies and chicken noodle soup. However, when she turned into the parking lot at the grocery store, she ran over the curb and hit a rock that flattened the tire on our suburban. Mind you that this town was made for compact cars. We got a serviceman to come out and put the spare on and took the other tire to get fixed. While they were waiting for his arrival, Megan had answered Kelly's phone for her and placed it in the grocery cart. The cart was returned and the phone forgotten. Shortly after they realized it was gone and started calling it to find it. After running back to the store and checking the entire suburban, it was no where to be found. The store told her it had probably been stolen because it had been turned off and went straight to her voicemail. 2 hours after I called the serviceman he finally arrives and fixes the tire. While waiting for the tire, Kelly gets a call saying that the T-Mobile store in Palo Alto has her phone. A gentleman had found it and turned it in.
The grocery trip went from quick to 4 1/2 hours. But, it all ended on a good note. I am still glad your here Kelly! Blessed again today!
Monday, August 6, 2012
Sunday, August 5, 2012
Aug 5, Sunday, More 'Boring'
9:20 pm.
Another great day. Not even the doctors had anything to change or report on today. Megan, Gage and I went to church today, while Kelly sat with Lindsey. That felt really good to go. Lindsey made 4.5 laps and was looking for more. She is off isolation and can now go to the playroom. Gage is still coughing and congested so no great improvement yet.
I don't think we mention enough what a wonderful group of people live here. For almost 2 months now we have had meals brought to us 3 times a week. People offering to take our kids on outings or shopping with them. And so many other acts of kindness, it is amazing. How can we ever repay them. And that doesn't count our friends and neighbors in Oregon helping in so many ways.
It always seems like when we are having our toughest trials the Lord continually pours out blessings. Just to name a few; Lindsey is stronger and healthier, we are able to be here together as a family, people here and at home amaze us away with their continual acts of kindness. There is so much love and support every time we turn around. I definitely feel our burden lifted through these and many other blessings. Thank you everyone!
Sheila, Lindsey loved your comment and it touched my heart too. What neat friends she has. Too precious, I hope you took a picture.
Another great day. Not even the doctors had anything to change or report on today. Megan, Gage and I went to church today, while Kelly sat with Lindsey. That felt really good to go. Lindsey made 4.5 laps and was looking for more. She is off isolation and can now go to the playroom. Gage is still coughing and congested so no great improvement yet.
I don't think we mention enough what a wonderful group of people live here. For almost 2 months now we have had meals brought to us 3 times a week. People offering to take our kids on outings or shopping with them. And so many other acts of kindness, it is amazing. How can we ever repay them. And that doesn't count our friends and neighbors in Oregon helping in so many ways.
It always seems like when we are having our toughest trials the Lord continually pours out blessings. Just to name a few; Lindsey is stronger and healthier, we are able to be here together as a family, people here and at home amaze us away with their continual acts of kindness. There is so much love and support every time we turn around. I definitely feel our burden lifted through these and many other blessings. Thank you everyone!
Sheila, Lindsey loved your comment and it touched my heart too. What neat friends she has. Too precious, I hope you took a picture.
Saturday, August 4, 2012
Aug 4, Daddy left for Oregon
11:40 pm.
Lindsey is doing great. She is less congested and hasn't had a fever for more than 32 hours. She will come off isolation tomorrow so we can go to the playroom. We'll see if she actually wants to go. She hasn't wanted to before, but that could be because she was getting sick. She is walking faster than we can push the Berlin and likes to see if she can speed walk ahead of us and give us a good workout.
A little frustration, as Lindsey started getting sick, Gage developed a cough. We are hoping it is a virus and not a cardiac issue. However, because he has a cough he is not allowed in the hospital. This tends to complicate things. Jason, Sierra and Hunter left this morning for Oregon. Thank Heavens my sister Kelly is here. She has stayed with him at the RMH, while I stay at the hospital with Lindsey. We are hoping this is short lived. He has appointments on Tuesday for his pace maker and cardiomyopathy. Hopefully he is better by then and he can come back into Lindsey's room. Jason, Sierra and Hunter will be back in one week unless we get a call. Just trying to get whatever we'll need for the kids to start school.
Lindsey is doing great. She is less congested and hasn't had a fever for more than 32 hours. She will come off isolation tomorrow so we can go to the playroom. We'll see if she actually wants to go. She hasn't wanted to before, but that could be because she was getting sick. She is walking faster than we can push the Berlin and likes to see if she can speed walk ahead of us and give us a good workout.
A little frustration, as Lindsey started getting sick, Gage developed a cough. We are hoping it is a virus and not a cardiac issue. However, because he has a cough he is not allowed in the hospital. This tends to complicate things. Jason, Sierra and Hunter left this morning for Oregon. Thank Heavens my sister Kelly is here. She has stayed with him at the RMH, while I stay at the hospital with Lindsey. We are hoping this is short lived. He has appointments on Tuesday for his pace maker and cardiomyopathy. Hopefully he is better by then and he can come back into Lindsey's room. Jason, Sierra and Hunter will be back in one week unless we get a call. Just trying to get whatever we'll need for the kids to start school.
Friday, August 3, 2012
Aug 3, Sierra's 6 year anniversary date
11:00 pm.
Well Lindsey won't be celebrating her transplant date with Sierra, she will get her own special day. Lindsey had a much better day. She is still not fully back but doing better. Her fever is gone but her runny nose and congestion is still hanging around. Because of that she can go on walks but not to the play room or to the physical therapy gym. If the fever had persisted, she would have been listed as 'status 7' meaning suspended from the transplant list until she was better. But for now she is still a 1A priority. So a little virus to us is a big deal to our Princess.
Enjoyed reading the comments from people. They are a strength to Stacy, Lindsey and I. Thank you for the love and support. Today at 5:30 six years ago was the time Sierra went in. Nice to reflect back on the miracles in our lives.
Stacy's sister, Aunt Kelly and her baby Easton are here for a few days. She is here to help out as Sierra, Hunter and I drive home to Haines for a few days. With her here, Stacy and I went on a much needed date tonight. It was nice to get out a bit.
One stop we made was to REI. I didn't realize how hard that was to go in there. Hard to explain, but everything in there are 'things' I enjoy using or doing. But life is different now. Now we are so consumed with Lindsey and her needs, that stuff just doesn't matter. I wish it did, I wish we could go in there and buy cool 'stuff' to go elk hunting in the Eagles. But now all I want is for my Princess to eat something, for blood clots to stay away, for her blood count to come up, for her runny nose and congestion to back off, for her to gain some good weight, and for a donor to be prepared. All that other stuff is just a dream. It was quite an emotional experience I was not prepared for.
Well Lindsey won't be celebrating her transplant date with Sierra, she will get her own special day. Lindsey had a much better day. She is still not fully back but doing better. Her fever is gone but her runny nose and congestion is still hanging around. Because of that she can go on walks but not to the play room or to the physical therapy gym. If the fever had persisted, she would have been listed as 'status 7' meaning suspended from the transplant list until she was better. But for now she is still a 1A priority. So a little virus to us is a big deal to our Princess.
Enjoyed reading the comments from people. They are a strength to Stacy, Lindsey and I. Thank you for the love and support. Today at 5:30 six years ago was the time Sierra went in. Nice to reflect back on the miracles in our lives.
Stacy's sister, Aunt Kelly and her baby Easton are here for a few days. She is here to help out as Sierra, Hunter and I drive home to Haines for a few days. With her here, Stacy and I went on a much needed date tonight. It was nice to get out a bit.
One stop we made was to REI. I didn't realize how hard that was to go in there. Hard to explain, but everything in there are 'things' I enjoy using or doing. But life is different now. Now we are so consumed with Lindsey and her needs, that stuff just doesn't matter. I wish it did, I wish we could go in there and buy cool 'stuff' to go elk hunting in the Eagles. But now all I want is for my Princess to eat something, for blood clots to stay away, for her blood count to come up, for her runny nose and congestion to back off, for her to gain some good weight, and for a donor to be prepared. All that other stuff is just a dream. It was quite an emotional experience I was not prepared for.
Thursday, August 2, 2012
Aug 2, An off day
10:30 pm.
It started last night, but she is definitely not feeling well. After all the hoopla with the Berlin battery yesterday, now she is not feeling well. She threw up this morning and has a 100.7 temp. She has had a runny nose and just feels lousy. We did get her on a small walk this morning to the physical therapy gym for a half hour and then on another small walk this evening. Everyone thinks it is a virus and should pass, but they watch everything pretty close. I'm sleeping here tonight, and Stacy is home with the kids. I'm hoping for a good nights sleep.
Trista took our suburban with all our kids and Shawn to the local swimming pool. They were gone all day and had a great time. Kinda sad to see them go tomorrow, but glad they don't have to stay for anything. They are great friends and hope Shawn continues to improve.
Watched Kade and Stephanie's boy Wyatt today while they were helping with their baby, Tristen, in the CVICU. The Dr's had taken the vent out and Tristen was struggling a bit. They were pretty stressed with a 2 year old hanging from them. The baby is doing better now. It felt really good to help them.
Time to get our Princess to bed. Thank you for your comments, we read everyone of them. I am still grateful for the prayers and support. I met another one of the head surgeon yesterday. He was saying we could be in for a long wait. With her positive anti-body test, size, and blood type, it could take months before a donor is matched up.
On another note, tonight is the night six years ago we all joined in prayer for Sierra. This was the night, August 2, 2006, we signed the papers to have her go on the Berlin the next day. This was the night we got the call. This was the night we received a miracle. Wouldn't that be fun if our Lindsey could share the same night.
It started last night, but she is definitely not feeling well. After all the hoopla with the Berlin battery yesterday, now she is not feeling well. She threw up this morning and has a 100.7 temp. She has had a runny nose and just feels lousy. We did get her on a small walk this morning to the physical therapy gym for a half hour and then on another small walk this evening. Everyone thinks it is a virus and should pass, but they watch everything pretty close. I'm sleeping here tonight, and Stacy is home with the kids. I'm hoping for a good nights sleep.
Trista took our suburban with all our kids and Shawn to the local swimming pool. They were gone all day and had a great time. Kinda sad to see them go tomorrow, but glad they don't have to stay for anything. They are great friends and hope Shawn continues to improve.
Watched Kade and Stephanie's boy Wyatt today while they were helping with their baby, Tristen, in the CVICU. The Dr's had taken the vent out and Tristen was struggling a bit. They were pretty stressed with a 2 year old hanging from them. The baby is doing better now. It felt really good to help them.
Time to get our Princess to bed. Thank you for your comments, we read everyone of them. I am still grateful for the prayers and support. I met another one of the head surgeon yesterday. He was saying we could be in for a long wait. With her positive anti-body test, size, and blood type, it could take months before a donor is matched up.
On another note, tonight is the night six years ago we all joined in prayer for Sierra. This was the night, August 2, 2006, we signed the papers to have her go on the Berlin the next day. This was the night we got the call. This was the night we received a miracle. Wouldn't that be fun if our Lindsey could share the same night.
Lindsey pushing her own pump around the room
The obsticle course at the physical therapy gym.
Wednesday, August 1, 2012
Aug 1, Megan's Birthday
7:00 pm.
Well happy birthday, Megan. 11 years today, what a big girl. Stacy, Sierra and Megan went shopping for her birthday and I have the boys here with Lindsey. They better have a good time.
Lindsey is doing great, but we are in need of Adam Kerns and his service truck. This morning at 2:00 am her Berlin pump alarm started going off. The alarm sounds like a home fire alarm and was going off every 20-45 minutes. It was driving me nuts trying to sleep! Each time two nurses would hustle in, grab the flashlight and mirror and start inspecting the pump and Lindsey's stats. Some how Lindsey slept all night long. Go figure. She is fine and so is the pump, but it had something to do with the recharging of the backup battery, they think. Because she has been going on so many walks, the pump was not getting enough charge time. There was no danger to Lindsey, just the backup battery didn't get all the time it needed for a full charge. Thus we need Adam Kerns or Roy Tidwell or anyone else from back home to trouble shoot the Berlin. Needles to say, it has been a crazy day. Tomorrow they should have all the bugs worked out.
Had birthday cake here in Lindsey's room for Megan. We had Kade, Stephanie, and Wyatt here along with Trista and Shawn Stockwell. It was quite a party. Tonight Megan and Sierra went out with Trista and Shawn. They should have fun tonight.
Stacy and I are trying to figure out how to pull off the next few weeks before school starts, getting kids ready, going home for a bit, Sierra to trek, while supporting Lindsey. Just need to work through it.
Well happy birthday, Megan. 11 years today, what a big girl. Stacy, Sierra and Megan went shopping for her birthday and I have the boys here with Lindsey. They better have a good time.
Lindsey is doing great, but we are in need of Adam Kerns and his service truck. This morning at 2:00 am her Berlin pump alarm started going off. The alarm sounds like a home fire alarm and was going off every 20-45 minutes. It was driving me nuts trying to sleep! Each time two nurses would hustle in, grab the flashlight and mirror and start inspecting the pump and Lindsey's stats. Some how Lindsey slept all night long. Go figure. She is fine and so is the pump, but it had something to do with the recharging of the backup battery, they think. Because she has been going on so many walks, the pump was not getting enough charge time. There was no danger to Lindsey, just the backup battery didn't get all the time it needed for a full charge. Thus we need Adam Kerns or Roy Tidwell or anyone else from back home to trouble shoot the Berlin. Needles to say, it has been a crazy day. Tomorrow they should have all the bugs worked out.
Had birthday cake here in Lindsey's room for Megan. We had Kade, Stephanie, and Wyatt here along with Trista and Shawn Stockwell. It was quite a party. Tonight Megan and Sierra went out with Trista and Shawn. They should have fun tonight.
Stacy and I are trying to figure out how to pull off the next few weeks before school starts, getting kids ready, going home for a bit, Sierra to trek, while supporting Lindsey. Just need to work through it.
The whole family for the party.
Our dear friends Kade, Stephanie and Wyatt.
Our other dear friends Trista and Shawn.
Megan blowing out her "candles."
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