August 25, Introducing Sir Axelrod

About a year ago, we made a deal with our Little Lindsey Lou. When she was in the hospital we told her we would get a puppy when we got home. We have now come clean with it.  We had even named the dog when we were in California long before the puppy was born.  There was a doctor we got to know 7 years ago when Sierra was there, and again this time around.  He was there the night Lindsey was put on the Berlin and when Gage was admitted. He went out of his way to help Lindsey and the rest of our family.  We joked with him that we would name this puppy after him.  Well, meet Axelrod, a lab puppy named after the CVICU Dr. David Axelrod. 

We got the black lab puppy from a good family in North Powder, and is smothered with love around the clock. The kids absolutely love him!

We still don't know when California wants us to come back for checkups. Hopefully this week they will let us know.

Other than that, kids have had teeth pulled by my brother, Gage learned how to ride a bike, and Stacy and I went to a bed and breakfast near the Tri-Cities (awesome). All good stuff.

Welcome little Axelrod

Named after Dr Axelrod (In the back with a tie on)

Dr Axelrod's Where's Aldo Halloween outfit.

 

 

Axelrod with Lindsey just after the seizure.  He was there (without the Waldo outfit) for most of Lindsey, Gage, and Sierra's big events.

 Gage's first push

And away he goes.

August 18, The Calif boys



Another great week. We had Nori here until Wednesday. It was very nice to have her here. She is such a good friend to Sierra and the other kids.

 

On Monday night seven young men two adults from the Redwood City ward drove here to spend the week with our family on the ranch.  The leader, Mike Fleming, was from the Palo Alto ward and we thought this would be a good experience for the young men he is over. So from Tuesday through Friday we provided a ranch experience.  Projects included moving sprinkler pipe, building fence, cutting and chopping firewood, riding horses, moving cattle, shooting guns, a mountain hike, and driving tractor. It definitely got them out of their comfort zone. Friday night we asked each of them what they will remember. Most of the talked about the hard work of building fence through a swamp. Hopefully we taught them some good life lessons.  There is a good chance we will never see those boys again.  Hope we taught them a bit about hard work, the rewards of that work, and taking responsibility for your actions, preparing for the future, overcoming challenges, and being grateful for what you have, and the things that are really important in life.       

 

Eric, Bruno, Omar, Fernando after a good morning of chopping firewood.

They are definitely tired, hunger, and thirsty.

Nori learning to ride horses.  My mother did a great job of teaching her along with the Redwood City boys.

At the rock at VanPatten Lake. It's an awesome 40' cliff. All but one went off.

Mike jumping off first.

And off they go.....

Jefferson, the other youth leader, did this incredible back flip off the rock.

Our kids went o the 1.5 mile hike to the lake.  They all eventually went in, but not off the cliff.

Bruno, Isaac, Omar, Junior, Jefferson, Jose, Eric, Mike, and Fernando.

 

August 11, Nori's here

It was a good trip to Calif. Fun to have Nori here with us. Gage looks and acts great, and doesn't complain of tummy pain, but he has lost some weight. (not good) We have him on a high calorie 'diet' to get some good weight on him.  Basically anything he wants to eat is great.
 
We did turn down 2 of Lindsey and Sierra's meds, that is all in the right direction.

Megan, Sierra and I went to the hills for another load of firewood.  I sure enjoy doing that, not sure if the girls share that same enthusiasm.  I did work them pretty hard.

Nice big rain yesterday.... all over our nice hay that was ready to bale.  O well.  As my Grandpa told my Dad back in the good ole days, "If you can't take a joke, you shouldn't have joined".   Have to think about that a little.

This next week will be exciting. We have 9 boys and 2 adults coming from Redwood City, Calif for the week to experience a country life.  We have a 'fun' schedule planned including (but not limited to) moving sprinkler pipe, cutting, chopping, and stacking firewood, riding horses, working cattle, stacking hay, fencing, mountain hikes, cliff jumping, and anything else that will come up. The sprinkler pipe and firewood alone will keep them busy.

Megan is playing the piano in church today. She should do awesome. 

Basically, we have nothing to complain about, life is good and we are enjoying the summer before school starts.
Till next time,

 This would be head lice treatments

 They are sleeping with their heads covered with oils to kill any bugs.

August 9, Test results

Made the long drive home yesterday. I don't care how many times we drive that, or how you break it up, it's always a long drive. To think when you get to Winnemucca you are only half way there. ugh. 

Anyway, we really do have great news. Both Sierra and Lindsey got zero's on there biopsies, and there heart pressures are down to 9, (which is normal). That makes the 13 hour drive much easier to bear.  They are turning down meds on both of them, so that is all good. They might spread out some of the treatments and tests, they will let us know. As for Gage, the concern there is his loss of weight. His energy level is great and does not complain of tummy aches, but he still doesn't eat much. We have him on the meds and supplement recommended.

Thanks Niccums for letting us stay there.  We had a great time.  

As we were getting ready to pull out Thursday morning, Nori Zanger was there saying good bye.  We were loaded up, seat belts bucked, Big Red shifted into drive, and Nori standing there looking at us like the cat did in the movie Shrek. Stacy and I had the same thought...  After a convincing conversation with her mother, we now have Nori in Oregon for a few days. Not sure how we are going to get her back to Palo Alto, but she is here and very excited.

August 7, Check ups for Sierra, Lindsey & Gage

9:30 am. Check up day here for the Binghams. Stacy and I drove down yesterday and are staying with the Niccums. Good to see some our good Palo Alto friends.

Today we have Sierra's biopsy at 10:00. She hasn't been biopsied since May.  We are hopeful her pressures and rejection, both antibody and cellular, are under control. They were trending down in May, hopefully that trend is continuing.

At 10:15 Gage has his pacemaker check, echo and ekg down in the Heart Clinic.  He sure has been doing/ acting great.  They will see how his heart is doing and how much he is riding his pacemaker.

At  11:30 Lindsey has her biopsy.  This is her 6 month checkup. If things are okay, they may move the biopsies to every 2-3 months depending.

Already seen many of the 'heart' kids. We have seen Shambaak, Rolieo, Analees, and Leif.  All dealing with a variety of issues, but doing very well.  We have also seen many of Lindsey's favorite doctors and nurses.

Analees and Lindsey

11:00. Sierra is in and Gage is in the middle of his echo. Report later.

2:00. Kids done.  As for Gage, all good except one thing. His weight is DOWN. His heart doesn't look any worse, energy level about the same, does NOT complain of tummy aches, he just needs to gain some weight. His pacemaker is still pacing. Check up in 3 months.
 
As for Sierra, her heart pressures are trending down from 13 to 9. They were 18 back in February.  All good stuff! That means we are not staying. There is always that little voice sitting on my shoulder saying, 'What if? What if her pressures are up, what if rejection is back, what if...what if...what if'  Today they are good and we will find out the biopsy rejection results tomorrow.

Lindsey is also done with her biopsy. She again did it awake and did a great job.  Her pressures are also 9, and will find out the results of the biopsy tomorrow.  If it is good, she will go to 3 month checkups.

 Gage and his echo

 Sierra started on her IVIG.

 Lindsey's good friend, Colette

 ...with Art the Clown

3 West and the infamous Shannon and Suzanne.  Look how Lindsey's eyes light up.  Good to visit her ole gang. 

6:00 pm.  Down to just Sierra and I. Stacy, Lindsey and Gage are all off to Liz or Michelle.  Sierra will be hooked up to the IV till about midnight.  

August 4, Sierra's 7th Anniversary

PK and Abby spent 4 days here. It was definitely a high light of Megan's summer. Megan showed them a bit of the country life style. They rode horses, toured the 'jungle', shot guns, swam in Wolf Creek, slept out under the stars, had a MaryKay birthday party, and did a lot of just 'catching up'. It was very nice of them to visit.

Yesterday, the 3rd, was Sierra's 7th anniversary. We still have many memories of those days. Her heart failure, vomiting, the blessing, the phone call, the miracle. It was a night that changed our lives forever. Oh, how we count our blessing to be sitting here in Oregon, enjoying our summer, dealing with 'normal' stuff.  Stacy spent part of day working in the yard and garden and I cut hay in the fields with Gage. We also drove to Boise to a cousin's wedding reception. We still don't take this stuff for granted.  

Since the dateline thing, and the maintenance of our blog, we have made contact with a grandmother of Sierra's donor family.  We have learned more about Nicholas and the hero he was. I have a ton of respect for that family.  This time of year must be horrible for them.  Words can not express how grateful we are to them for making the decision. His whole family are our hero's.  Hope they can comprehend the life they saved that night.

This week is a big week medically for us. Three kids have check ups on Wednesday. Lindsey has her monthly biopsy (it's been almost 6 months now), Gage has echo and pacemaker check, and Sierra has biopsy, echo, and IVIG. It has been 3 months since Sierra's heart pressures and rejection have been tested. Remember, her #'s were trending down but not back to normal. Stacy and I will be driving down with the 3 kids on Tuesday, tests on Wednesday, and driving home (hopefully) on Thursday. This is a good week to keep our oldest child in our prayers.  I will update during the week with the results.

It's interesting to bump into people who have been following our blog.  It's a strength to us to find out the impact our little girls have on others.  A lady from Boise was telling us how we always see the good in the situation. I don't look at it exactly that way.  We have a situation, sometime horrible, and we have to deal with it. Sometimes it stinks, but we are parents and don't have time to complain about it, or 'pitty us'. We deal with it, depend on others when needed, keep our faith in God, and move forward. Seems to be working so far.  Let's see how this week goes....  

 The MaryKay birthday party.

 PK and Abby shooting the .22 gun. We were safe, and did kill anything!

 Getting ready for volleyball season.

 Swimming in Wolf Creek.

 Stacy's fancy birthday cake.

        This is what happens to Sierra's hair when PK starts fiddling with it.

Happy 7th Sierra.