September 24, Birthdays and biopsies

In an effort to continue a brief record of our lives this is where we are at....
Sierra and Lindsey had there biopsies in Calif about a week ago.  Stacy went down with them on Angle Flights. Very generous pilots went out of there way to help our little family.  Stacy and the girls had fun visiting the Stockwells, Colette, doctors, nurses Riza, and Nichole, Nori, and 'Kevin' her teacher at the hospital school.  Interesting how our memories of 2012 and 2013 are beginning to fade. It was such a life changing experience. 

As for our kids status...not perfect reports, be we will take it.

Lindey's echo and heart pressures are perfect, and got a 1A for rejection (ranked 0-4 with 4 being the worst). So 1A is not perfect, but it is nothing to worry about.  They will see her again in Calif in early Jan or late December.

Sierra's echo was 'OK', (not perfect... but ok, per the doctors). Her heart pressures are up slightly (grr). But she got a ZERO for rejection. If here DSA (antibody) test comes back negative, which it has for several months now, they may turn down some of the heavy meds and not see her until early Jan or late December. Sierra also has some swelling in her face, tummy and feet. Nothing we like to see.  They are hoping that turning down some of the meds will help with that.  But we know it is not rejection.  In my very unprofessional opinion as a father, I believe there is a relationship between the less than perfect echo (the way the heart beats) and the swelling.  You would be amazed if you saw how many meds Sierra takes compared to Lindsey, 3-4 times as much.  That is just the way it is I guess.  Sierra has been getting up with me in the early morning to exercise.  She is not crazy about it, but does it for the health of it.

Gage is scheduled to be seen in Calif in late November to check and tune up his pacemaker.  He is acting and eating well and growing a bit. So if you are waiting for that 3rd transplant, you will have to wait!! (A long time, I hope).

That is the 'crazy' stuff, the rest is just good-ole fashion living.
Hunter's 8th birthday is today.  He is growing, and loving soccer. We remember pretty clearly what we were doing 8 years ago in Calif the night he was born.

Sierra's 15th birthday was on the 20th.  She has been studying for the drivers permit, but not ready yet. Seems to be dealing with high school, seminary, and boys.
Megan just loves to play volleyball.

 Getting ready for biopsy

 Art the clown came by for a visit

 VERY good friends, the Stockwells from Alaska.  Shawn had his transplant about the same time Sierra did.

Lindsey's good friend, Colette. They met up at the American Doll store for some girly fun.

Angel Flight pilot.

 Stacy and her cub scout.

 Sierra's big #15, with Darbie, Laurin, and Payton

 For some reason she wanted a 'mustache' cake.

She wanted NO help from little brothers.

 Kids took soap out to the trampoline. They had a ball!

Lindsey's friend, Flessia was also there.

 Stacy took the cub scouts to the local newpaper. Brave woman.

 Another soccer game for Hunter.

Stacy and little John (My sister Garrity's boy)

Hunter's Birthday breakfast.

8 years ago. Hunter and the girls.

 In Calif, about 7 weeks after Sierra's transplant.

Adding Shawn Stockwell, he was also waiting for  transplant.

And Megan serving it up.

 Range, Gage and Lyndie, pretty funny threesome

 Gage showing off his handy work at school

Megan and Sierra 'celebrating' with Hunter for his birthday.

September 7, Back to school

We are back into school. Sierra is a Freshman in high school. Megan is in 8th grade, Lindsey is in 5th, Hunter in 3rd, and Gage is in Kindergarten.  This is the first time Stacy will be home alone. Kinda weird.  However, she will be pretty busy with being the school nurse, volunteering in class rooms, being the new CUB SCOUT DEN LEADER (ha ha stay tune for that) and working at the hospital. 

Sierra and Lindsey have biopsies a week from Wednesday in California and Gage has another pacemaker check this Wednesday. Those tests will determine if/when they want to see him in Calif. He has been acting and eating very well.

Megan is very excited about the volleyball team. They had there first game in Imbler and won 2 out of 3.

As for Stacy and I, we still grateful to all be together in Oregon.

 I want to be in the picture too.

 A load for my parents. Good work for my kids.

 Sometimes we have to work at teaching our kids to work.  This was one of those times.

 Hunter and good-ole Axlerod.

Aug 23, Little Gage update

Due for an update for our family.  The summer has been cruising by. Over the last 3 weeks nothing major has happened. We have been involved in haying, working, and raising kids.
Just to put our lives in perspective, a few weeks ago we drove to Parma to visit Stephanie and Kade Thomas. They are our good friends we met in Calif two years ago who had a daughter born with a half a heart. Tristin had a pretty rough year, and now she is going on the transplant list.  They will be leaving their nice Homedale home, and living in an apartment in Palo Alto area as Tristin is placed on the transplant list. Needless to say, we had much to visit about as they prepare for the 'wait'.  They have a huge challenge in front of them as they care for Tristin, raise Wyatt (their 5 year old), Kade keeps his job in Idaho, and stay together as a family. We have a lot of respect for them.  So when we start complaining about anything, we just have to remind ourselves about the Thomas's.

Kids have all been doing very well. Each night Stacy and I are grateful for this time we have to be in Oregon together as a family. Nothing to report on Sierra and Lindsey, they take their meds and act pretty normal.  They both have biopsies in September. As for Gage, he had a pacemaker check the other day.  We are able to transport data from the pacemaker over the phone lines to Calif. We do this test every 3 months, and this time they called us back with some results.  To our surprise, according to the pacemaker 'memory', Gage had 3 runs of V-Tack between May and July. It also showed increased fluid retention.  So they were wondering if he has been acting strange, getting puffy, or passing out. Good grief NO!  He looks and acts great. If we had any concerns with Gage, they would have been the FIRST to know.  Anyway, after that test, we had a echo done on our little guy. It showed a slight increase in fluid retention and a small increase in the size of his left ventricle (both not good).  This is all a blunt reminder of the heart disease he has. Many times I hope we are done with all this, but we are not. There will always be something to watch and worry about.  Worrying doesn't do any good, so.... they take their meds, we watch their activity, and, as I said, we are grateful for this time we have to be together here in Oregon.   Now we are waiting to hear what Calif wants us to do. His next scheduled checkup will be in November, but now they may want to see him in September with Sierra and Lindsey.  It's easy to say, but hard to execute '...highs to high, or the lows to low'.
   

 Kade, Stephanie, Wyatt, and Tristin

 Sierra and Nori, her good friend from Calif.

 

 Some cute pictures of Megan with her good friends, Mattie and Logan.

 And our teenager heading into high school

 And Hunter showing off his triceps!

Gage at our Family reunion 3 weeks ago.

 Hunter trying to keep it between the lines.