99, Announcements

First of all...Announcements. On June 5th at 8:00 ET NBC Dateline will be showing an episode titled 'Against All Odds'. Since July of last year Sandy has been following our story and has taped various points in our journey. I haven't talked about it much because I didn't want it to be a focus of our lives. We have been working with Sandy Cummings from Bend Oregon. She has been very kind and considerate of our situation. We have felt comfortable sharing our story with her.  The main reason we agreed to this was because we can see good that can come from sharing story like this. The need for organ donation, to put our lives in perspective, and to separate out the important things from all the other 'stuff' are just a few of the reasons we agreed to this. They were here the night of the transplant, have been to Oregon, here when we decorated our Christmas tree, and have been here during Lindsey and Sierra's treatments.  Hopefully the right message will be shared.  I am a bit nervous to see that nasty ole chin return on the big screen.

Couple of fun activities to report on yesterday. After school and a clinic visit, we went over to Barbara Alhouse to swim in her pool. It was the first time we had been to that pool since early June 2012. Jane, Kerby, and Kerry were also there. It was good to get together with them. They are a good family.

Then we hurried off to Jordan Middle School for Sierra and Megan's end of year out door band concert. They both did a great job (I think). Megan's 6th grade band had 200+ in it, 20-25 clarinets playing in her section, so she could have been faking it for all I know. But it sounded good. Sierra played in the 7th grade jazz band and concert band. It sounded really good. But dang, it was windy and cold. Yes, in Palo Alto, it was cold. Well not Oregon cold, but we were not prepared.  We needed jackets, blankets and had only short sleeve shirts. After about 2 hours we were chilled.

Kids have finals today and tomorrow.   Some could be pretty challenging. Hopefully it goes well.

 Kerry and Kirby Gee

 

 The kids in white are the 6th Graders, Blue is the 7th.

 See Megan?

 Sierra in the Jazz band

 All huddled up. We must be wimps. Gotta love that Predisone!

Look at the guy behind us. That is a real human, (I think).

 Gage helping with a blood draw, coached by the Princess.

 His turn.

 Sandra from PT

 PA Laura, and Dr Kaufmin

Lindsey's final clinic visit before we go home. (can you believe that)

 

 

 

97, Long day in the 'Short Stay'

When Sierra has IVIG it turns into a long day. She got here at 7:30 am and will get done around 10:00 pm. NOT complaining, it's just a long day to sit here. Stacy and I have traded off around 3:00. Stacy went home with the kids and I am here working while Sierra is studying for her finals.

Megan had her end-of-year open house in her classroom. She seems to be doing well in school.  Going to Jordan has been a good thing for her.  Lindsey had PT and school today, nothing new.  Hunter was proud to tell me that a lot of kids got into trouble for not doing what the teacher said, but he did what she said and didn't get into trouble.  That's my boy!

 Almost done.

 New stretches and exercises

 Spiderman's were there heading out to clean windows. Gage LOVED IT! He could have watched them wash windows all day.

 I don't think you would call it 'Spidermen'.  There is only ONE Spiderman, so they must be Spidermans. (whatever)

365, One Year ago Today

It was one year ago today Stacy and Lindsey were life flighted here. Wow, one year today. So much has happened. Still planning on leaving Thursday the 30th and getting home on the 31st. Excited for the chance to actually go home. 

Well the Hospital Prom was like nothing I expected. It was like a fancy PV School carnival, all shoved into the LPCH Cafeteria. There was all kinds of games and activities for the kids. There was a DJ playing fun dance music, but the real action was at the kids games. There was a huge turn out, and out kids had a great time. Since I was running solo, there may have been a few moments when I didn't know exactly where the kids were at any given moment. But hey, they were all found, and alive.

Saturday was Megan's BB tournament in San Carlos. Need less to say, there was plenty of humble pie served at the games, and Megan ate a huge slice of it. I enjoyed the games and kids had a blast at Zangers.

Uncle Jay and Aunt Bonnie were here and spent the last few days with us. We went to Johnson Park on Saturday afternoon, and showed them around the hospital this morning. We love and appreciate them.

Sunday morning my dear wife flew in. We were all excited to see her. She had a great time. She made it through the house and had a good time with her sisters and mother. It was very kind of them (and my Brother-in-laws) to come to Oregon and help Stacy get the house ready for the return.

Stacy and I had the opportunity to speak in church. It was a great time to tell the ward how much we love and appreciate all that they did for us. And we do! This ward has helped so much with meals, rides, play dates, babysitting, activities for our kids, and the spiritual support we have needed. It is too bad it took till now to get to know some of them, but for 8 months we were tied to the hospital and couldn't get away physically or mentally.  There really are some really good people here and life long friends. Since we will be coming back monthly, it will be good to keep up with them. Don't get us wrong we are very excited to finally be able to go home, it's just going to be hard to leave these really good people.

Speaking of, Marci Stephens had a 'Not-a-Farewell' party for us. It was a fun activity to have. It was very thoughtful of her and others.

Tomorrow (Tuesday) Sierra has IVIG for 12 hours (yes every month she has it). Lindsey has PT, blood draws and school.

Gagearealeous

 

 Spiderman was at the hospital washing windows. I was very impressed!

 Dressed up and ready to go.

 Aunt Bonnie and Uncle Jay

 Linds with her favorite teacher Kevin.

 Bishop Cook and his first councilor Kiger

 One of the activities at the Hospital Prom. There was at last as much work put into this as the Halloween Party. That's saying a LOT.

 Linds and the one and only nurse Shannon. She came just for Lindsey.

Marci Stephens. PK's mom.

93, Hospital Prom

Hello everyone this is Megan. It is 5:23 PM and we are getting ready for the Hospital Prom. Lindsey is really excited! In contrast, it was crazy day at school today. I thought that this would
be the perfect day for Sierra!

 Sierra is excited and definitely ready and prepared!

 

 Here is Sierra, Lindsey, and I before we went down stairs to get are hair, makeup, and nails done!

 

This is during:

and this is after:

Wow! Big difference! Sierra and I went from crazy day to prom! Thank you! Love ya'll.

Megan

92, Gage's pacemaker

We are having a great day. Wish I was getting more work done, but right now my kids needs me. To catch up with everything, Tuesday was a good work day. We seem to have a lot going on back home. Just because tax season is over doesn't mean we are not busy. It has been good working remotely, but there are still times it would be nice back at the 'Mother Ship'.
Yesterday was Lindsey's biopsy. She did great, heart pressures good. Blood levels are good. Did the biopsy asleep, still not ready to make the jump back to doing the biopsy awake.  Got word today, regarding her rejection, or lack there of. That's right, she got another ZERO.  We love zero's! Since she has had good biopsy results, they are turning down her predisone, from 10 mg to 8 mg. They may even turn down her Prograf, another one of her major drugs. That's all good. Next biopsy for her will be June 12. On that day Lindsey will have a biopsy and IV treatment and Sierra will have IVIG. 
Right now (1:00 pm) I am with Gage. He is having his 3 month pacemaker checkup. He is still 100%dependent on his pacemaker.  Just talking to Debra and she was saying that this pacemaker issue with Gage is very rare. His sisters never had this problem, but for some reason his heart failure has shown it's self in both the weakening of the heart muscle (like his sisters) and the electrical function (his need for a pacemaker). As for how he is doing, he is eating as good as I have ever seen him. His energy comes and goes, but is mostly fine. Still complains of occasional tummy aches, but not as often as he used to. Still looking at replacing the pacemaker in about 3.5 years. Most devices can last 5-7 years but this Bingham kid is riding it pretty heavily.   Deb just lined me out with a portable device for Gage. When we are back home in Oregon, we can hook into a phone line and transmit data from his pacemaker. Cool little machine.
Then he had a clinic appointment with Dr Coffmin, a heart failure doctor. Basically she said there are no signs of his heart failure progressing. It is still there, but it is NOT progressing. She even said his heart has slightly reduced in size. That's great! Hey, I can handle the pacemaker issues if that dang heart failure keeps it's distance.
Stacy left this morning at 6:15 am for Oregon. She is there right now with her sisters and mother for a fun busy weekend.  She has the daunting task of going through the house, clothes, and stuff before the tribe arrives. They have grown out of all their clothes and I have left some creative 'piles' here and there. We both agree, it is such a strange experience to go to our Oregon home, how everything is just sitting there waiting. Anyway, they are having a great time. (They better be).
Tonight (10 pm) Lindsey is getting an MRI. They are checking to see if she has any lingering affects from the PRES seizure she had 3 months ago. There shouldn't be anything, but they need to check her out thoroughly before we can we can go. You could say it is part of their bucket list.
That's it for now. I've got control of this. Stacy better have a good time and not worry about us. Not sure what is going on tomorrow, but we got it.

She is out of here.



 

EkG and Optimizing his pacemaker (the green 'froggy' on his belly)

 She is going in.

 Notice the goggles and head phones for the movie she is watching.

 It's 10:30 and she is still in there.

With Dr Snyder, and her publishing party. Lindsey wrote a book about her experiences and Dr Synder had it bound. We had a publishing party with Jamba Juice's. It was good experience for her to give her closure.

 

89, Monday Night

Since getting the good news on Sierra, there has been NO medical issues to report.  I have to say, it was a special moment last Friday when Stacy told us that Sierra had received a Zero and her anti-body rejection had gone down (not away - just down). It was an exciting time. 
On Saturday we tackled one of Lindsey's bucket list items. We took the kids and 4 of the their friends, Nori, Mya, Alley, and Sadie to the SF Zoo. Since we had 9 kids we couldn't take 'Big Red' so we took the CalTrain, then the Bart, then a Muni bus. It was pretty exciting getting the crew from one train stop to the other. Saw a lot of interesting creatures roaming the public transportation system. Zoo was nice. The last time we were there was the day before Hunter was born 6 and a half years ago.
That night I took the boys to a minor league baseball game in San Jose with Neal, a guy a met at work.  It was very nice of him and we had a good time. At first Hunter wanted to stay home and have a 'movie night' and by the time the game was over his was ticked off that the game didn't go longer.He's a funny kid.
Had a great Mother's Day. Hunter and I went over to the hospital and helped a father give a blessing to their new baby.  Their little baby was going in for surgery today and needed all the blessing he could get. After church, we went over to Liz and Joe Niccums for dinner. They had pot roast, mashed potatoes, rolls, and salad. It was awesome. Stacy seemed to have a very nice day.  I sure have a good wife and mother.
Back to school today. Megan gave a persuasive speech on the need for competitive sports. If you know our daughter, it was perfect for her.  She gave arguments why competitive sports are good and why parents should not discourage it or avoid it. My favorite part of her speech was when she talked about teams that they were so much better than, and how you should still work on your skills and not get lazy. It was classic. There's a bid ole' slice of humble pie waiting for her.
Tomorrow, Sierra gives an 8 minute presentation on the Aztec culture. She is pretty nervous but should do fine. She has worked on in quite a bit. 
Lindsey has a biopsy on Wednesday and seems to be doing great.
Big question is when are we going home. They are planning to release Lindsey and Sierra the last week of May. School gets out on the 30th, so that would be the best time for 'Big Red' and the Mazda and head to Oregon.  We will be back June 12 for more checks ups.

I don't feel like we are saying good bye to our new California friends.  We have a long term commitment (times 2 or 3) to this area. There will be numerous trips and opportunities to visit and catch up with these wonderful people. We owe them so much for making this a good experience.

 Captured a cute picture just as Stacy told the news.

 Linds and Stephanie,

 Dr's Yeh, Axelrod, and Hollander

 Yah, that's Keith Morrison. Early June it should be on Dateline.  I'm already nervous about it.

 At the CalTrain Station

 On the Bart

 The girls and Nori, one of Sierra's good friends.

 On the exciting zoo train

 Linds, Abbey, and Sadie.  These 2 have been life savers for our little girl

 Hunter and Stacy 6 years later

 Stacy, 'Hunter' and the girls from 6 1/2 years ago. Hunter would be born about 8 hours from then.

 The boys at the minor league game in San Jose

 Waiting at the train station to come home