Aug 15, Huntington visit, IVIG, and first school day

1:00 pm.
Lindsey has been off yesterday and today. Her right shoulder started hurting and has continued through today.  They are not sure why.  At first we thought it was a pulled shoulder muscle from increased activity during therapy. But it kept her up a lot last night and her heart rate has been increasing (in the 130's). She has also had some low grade fevers off and on but nothing spiking... yet.  Her picc line has been in for 5-6 weeks, since before the Berlin. Wondering if that is causing the irritation or an infection (hope not).  It may be time for that to come out.  Right now she is sleeping, Stacy has the kids out finishing their school shopping and I'm here checking e-mails and working a bit.

Yesterday evening Julie Huntington, Katie, Tommy and Ashley came through for a quick visit.  Very nice of them.  They were on their way back from a vacation in southern California heading to Oregon.  They sure picked Lindsey's spirits up. Thanks Julie, it was nice to have you here.

To add to Lindsey's night last night, Sierra had her IV treatment for her anti-body rejection. She checked in at 9:00 pm and it was over this morning at around 8:30 am.  So here was the scene last night.  Lindsey feels lousy and Stacy stays here with her, I head home with the boys, Sierra, and Megan at 8:00 pm, the boys are tired and wining and really need to go to bed.  Megan and I help get Sierra packed up with some PJ's for Stacy, a toothbrush, meds, etc. Then she heads back to the hospital on her bike. Stacy meets her at check in and helps her get settled into the 'Short Stay' unit for her IV treatment.  Stacy spent most of the night with Lindsey (who didn't sleep well) while checking in with Sierra downstairs.  I came over at around 7 this morning to be with Sierra as she was finishing the IV.   Sierra did great with the IV and will have her annual biopsy in early September.

This afternoon one of us needs to go with the girls on their bikes to Jordan Middle School to get the bikes registered and more orientation.  There are so many neat activities our kids can participate it and we want to be involved in, we just have to remember why we are here. We have a little Princess on the Berlin waiting for a heart transplant who needs a LOT of our attention.  We just might not be able to volunteer at Hunter's school and attend PTA meetings at Jordan, work a night shift at the hospital, be the school nurse, harvest a garden, cut firewood, coach YMCA, and everything else we are used to doing.  Megan would love to go out for volleyball and basketball and Hunter wants to do soccer.  It will be all we can do to get them to/from school and do a bit of homework. This has been quite an adjustment for Stacy and I. We understand, one day at a time, one week at a time.

Received a really nice letter/package from Judy Rembacz (used to be Judy Holmes).  We ran around together back in the 80's along with Scott, Jared, Nathan, and a bunch of others. Brought back some good memories.  I still struggle with how to thank people for the kind packages, gifts, cards, comments, jokes, fund raisers, prayers, etc.  We are so appreciative of every gift and card. We read and enjoy each one. Thank-you!

8:00 pm. Well I ended up taking the girls to Jordan.  We found and met their counselor and they now know where to go tomorrow.  Feels like the first day of college on a huge campus. A bit overwhelming for kids from Powder Valley.  Tomorrow they will realize they can do this.  Stacy will drop them off at 7:40, and they will be cute and ready to go.  Stacy will then head to Hunters school for parent, teacher, student orientation.  I am staying here with Lindsey tonight.

Lindsey's temperature did spike at around 102 degrees.  They are treating her with some antibiotics and Tylenol.  Her fever has now broke and she is dripping with sweat.  She has slept most of the afternoon so it could be a long night. Hope not. Her shoulder still hurts.  Massage came in around 3:00. She likes that. They have taken blood cultures looking for infection. Find out tomorrow. For now they are treating her as though she has one. We are heading on a short walk. 2nd one of the day.  Hope for a good night.

So basically, we haven't had time to sit around and wish for a new heart. Today has been and will be pretty busy.

 A dang cute picture of our Princess.

 Yesterday with Katie, Megan, Ashley, and Sierra

 Tommy, Hunter and Gage in the Sobroto Family room.

Colten Richards #31 at the Shrine All Star game in Baker. Notice the tape on his wrists.

Thanks Colten.

So you wonder why her tummy hurts and itches, and why she doesn't stand up straight.

So when you are complaining about a tummy ache.... 

Aug 13, 1st day of School for Linds

7:40 pm.
It was pretty exciting this morning.  Stacy came over early to do her hair and get her ready.  We took pictures and headed down the hall.  It's not that far, we walk past it many times on her walks.  She was a little deflated when she walked into her room and there was 1 other kindergartner there and that's it.  In her room is grades K-5, the other room is 6-12. So for her first day she had a teacher named Kevin, her 2 nurses, and a kindergartner with a bunch of IV's.  They made it really fun for her with games and activities.  School went from 9:30 to 11:30. Starting Wednesday, school will go from 9:30 to 11:30 AND 1:00 to 3:00.  They say there will be more kids as the teachers go around and search out the kids in their rooms.  We are a bit confused why there weren't more kids there, but they said the number in her class will increase from 2 to something more (we hope).

At 1:00 she had physical therapy, call it PE.  She has fun with the therapists. 

While Lindsey was at school we drove to the Palo Alto district office and got Sierra and Megan registered at Jordan Middle School.  They are both very nervous and a little bit excited to go to a big school.  Megan wants to go out for the basketball team. You go girl.

Again we find ourselves in awe and humbled at the outpour of support EVERYWHERE!  We have heard recently of the fund raisers that have been done in Lindsey's behalf.  Including the amazing story of Mya's lamb being sold in the Cache County Fair for Lindsey Lou. Lindsey has some pretty neat cousins, aunts and uncles, grandparents, and friends in Cache Valley. Thank you everyone very much!

Tonight we have Stephanie and Wyatt, and Liz Niccum and her 2 kids, and our gang in Lindsey's room to eat pizza and watch Lorax on the big screen.  When she feels good it's a party around here.

 Lindsey being left at school. See all the students crowding around the table.  She wasn't too thrilled.  There will be more, they promise!

Lindsey at PE, walking the balance beam.

Room full of kids ready for the movie.

Aug 12, Day before school

9:20 pm.
There is a bit of excitement in the air here in 3 West, Room #3241. Tomorrow is the first day of school for Lindsey.  The hospital school is down the hall, has 3 rooms, and is part of the Palo Alto School District.  For some reason the hospital starts tomorrow.  Sierra, Megan, and Hunter will be going to regular schools and will start Thursday.  Lindsey has picked out her first day school outfit and you can bet Stacy will have her looking cute as a princess for her first day pictures. Stay tune for that.

Gage is feeling much better.  His cough is all but gone.  Again answers to prayers. Him and Hunter love to fight over anything the other person has.  The biggest fit comes from the boy who doesn't get to push the button in the elevator. And it is a fit!  We played Wacky 6 in the play room today.  Pretty sure Stacy was cheating but I can't prove it.......yet.

We have heard about the success of the pie social in the Geiser Pollman Park in Baker.  Wendy sent a picture of the event. Looks like a lot of fun. We are still in awe of the love and support we are receiving from countless people back home.  Not sure how we could ever properly thank them. It is an amazing community we live in. We would sure love to be there. 

Regarding our wait for a donor heart.  There are two limitations that has and could make the wait longer.  1st her blood type.  She is O negative.  Meaning she is a universal donor but must receive a type O heart. 2nd is her anti-bodies. Because of the blood transfusions in early July and her own body she has increased anti-bodies in her blood. That means the donor heart will need to be tested against those anti-bodies to see if it is compatible.  These 2 limitations along with her size could make the wait drag on for months.  We hope not, but need to prepare for that.

Sierra's IV treatment for her anti-body rejection is Tuesday night at 9:00 pm.  It will run for about 12 hours.  They will retest her anti-body rejection along with all the other stuff at the September biopsy.

At times I am fighting off the guilt of not being home to work.  I still know this is where I need to be, I just feel....I don't know.... I should be contributing more on the ranch and office and my calling in the Young Men.  My parents have taught me to work hard.  This is a different kind of 'work' down here, a labor of love I guess.   I do understand this is where I need to be.  Frankly, my wife carries the load and I just hang on and cry when the going gets tough. She is a dang good woman. Not sure how I got that lucky.

Aug 11, Back together

10:30 pm.
Daddy here.  It's been a while since I have updated so I thought I would share a few thoughts.  For the past week Sierra, Hunter and I have been home working and playing. Sierra and Hunter have been playing with their cousins and friends. I have had plenty to do at the office and on the ranch. A lot of haying that needs to be done.  It was enjoyable to get back into our home life, church, haying, ranch work, and office. I enjoyed driving tractor and working with my Dad and brothers.  It's amazing when Lindsey is doing well, my Dad and I can get a lot done. And now, Lindsey is doing well!  My mother and Sierra did a great job going through bags of clothes for Hunter. Thank you Mom, your help is so appreciated.  My Mom and Dad have done a great job keeping the garden and home together.  Wish Stacy could be there to enjoy it.

Sierra decided not to go on the stake trek to Wyoming.  There was just to much going on, Lindsey to watch, school to prepare for, and dentist appointments.  Sierra and Megan start junior high here in Palo Alto this Thursday the 16th. Lindsey starts on Monday here at the hospital, and Hunter starts kindergarten somewhere? This week I would sure like to figure out where they will be going to school.

Brad and Bryson Allen flew Sierra, Hunter and I to Livermore today.  Then we took the BART and Caltrain to Palo Alto.  It was good for us to learn and take the train system.  Hunter needs to learn how to 'hold it'.  There are not many bathrooms on private planes or public trains. Thank goodness we didn't have any 'accidents', but he was sure feeling the pain.

This evening Dean and Dawnie Baxter stopped by.  They were in San Jose for Trace's baby blessing. It was so nice to see them. 

Wish we could be home working and playing, but this is where we all need to be.  Lindsey is doing great and I thank my Heavenly Father for that.

Sorry for the kinked neck. I can't figure out how to rotate. If you know, let me know. 

With Dean and Dawnie Baxter 

Eating a turkey sandwich

Aug 10, Sierra's AMR ...

4:10 pm.
Lindsey is doing great. She has some skin irritation around her abdomen that is driving her CRAZY.  She almost obsesses about it. It is constantly itching. They have given her some medicine but it doesn't really help. They can't use ointments because they will breed bacteria and infection, which we do not want.  They are working on some solution because it is really bringing her down.   Today we went to PT and made some chocolate chip cookies again. She enjoyed that and even ate a big spoon full of cookie dough.  Her blood is as thin as they want it and rounds are really quite boring. She is doing wonderful and excited to start school on Monday.

Sierra on the other hand, has been on the back burner of our minds and worry for awhile. It is time now, to shift some of our attention back to her. She has been fighting for a couple of years something called AMR (Antibody mediated rejection).  This is where you see high levels of antibodies in the blood. AMR also goes along with coronary artery disease which she has had in the past.  The treatment for this is a 12 hour monthly infusion until there are no antibodies left.  Her numbers haven't been high, but they are not going away either. So, she is going to start her infusion at 9 p.m. Tuesday at the day hospital and rest Wednesday so she can start school Thursday. Then the first Wednesday in September they will do her annual biopsy where they look at her coronary arteries. They we will make more decisions after that. It certainly never ends, and now we get to times that by two, possibly more...

Thank you Michelle for taking Gage and Megan yesterday, they had a ball. Liz, thank you for taking Gage today, you ladies are amazing!!

Aug 8, Gage's appointment

8:00 pm, Wednesday
Sorry about not posting yesterday it was a busy day. Gage had a follow up appointment for his cardiomyopathy and his pacemaker. It started off with an echocardiogram, which he fell asleep in the middle of it. Great for the tech trying to do the echo. Then they were going to sneak in an EKG while he was still sleeping. Unfortunately, he woke up to 12 different stickers being placed on him and a bunch of wires. He did not like that at all. Something similar to the picture of him screaming when he had his chest staples taken out. Then it was on to see the doctors. We saw the fellow first then Dr. Yeh. They said his echo is unchanged from the one in June (good news) and they started him on the same beta blocker that they had started Lindsey on shortly before her hospitalization. This time I think it will work. Then we finished off the visit with some fine tuning of his pacemaker. He has been acting great, but still has the nagging cough. It is worse at night and first thing in the morning and then it tapers off to hardly anything during the day. They want him to stay out of Lindsey's room as much as possible. Which is a little tricky since I just took Kelly to the airport.

Our good friends the Thomas came and took Gage for quite awhile which was very nice of them. Thank you Stephanie and Kade! Just a side note, their daughter, Tristen, is doing great and was placed in a crib today instead of the infant warmer she has been in since birth. She is off the ventilator and doing well.

 Lindsey has been itching a lot at the Berlin site and it is driving her crazy. Last night was her first night alone and she couldn't sleep because of the itching. So at 11:00pm they gave her some ambien to help her sleep.  It really snowed her. She has been sleepy all day today and she hasn't been quite as chipper. Hopefully she sleeps tonight. Bye for now.