Category Archives: Fun

Milky Way and Needing a New Heart

Wow – the Milky Way

A couple of weeks ago, we went to family camp at Roundup River Ranch Family near Gypsum, CO. I don’t think we were every there without cloud cover. This time we could see the Milky Way, shooting stars, and watch satellites crossing the night sky. Zayne did the usual camp stuff – archery and boating. There was even a car show to enjoy.

Zayne wants an old sports car
Zayne reading from Colorado Roadside Geology

During the drive, Zayne read from Colorado Roadside Geology book (for only 5 minutes, but it was a start).

Archery

Zayne’s heart isn’t doing so well. She has cardiac allograft vasculopathy (CAV) – this is where heart blood vessels become blocked. CAV a progressive type of coronary artery disease that is related to transplants – the only definitive long-term treatment for advanced CAV is re-transplantation. Right now, Zayne is on the heart transplant waiting list as a level 2 (this means it is not a rush). The car is packed, my cell phone is always on, and we are limited to being within a 2 hour drive of the hospital. Next month, she will have a special heart catherization where the blockage in her circumflex artery will be measured. If oxygen levels are reduced, a stent will be placed, and there will be a petition to move her up to the next waiting list level (more urgent need for a new heart). Unlike coronary artery disease (CAD), a stent will only be a temporary help for CAV – the plaque will grow over the stent.

So, play, ride horses, go to school (against Zayne’s wishes), and wait…..

We had fun at an amusement park

Bumper Boats with water guns
Race car driving
First time driving
Don’t tell anyone, but here is another driving first (for real)

The old blog subscription add-on no longer works, so I’m trying a couple of things to enable email notifications for new blog posts.

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We’re Back

Well, it has been a long time since there has been a post. Zayne is now a middle schooler (6th grade) attending Prospect Academy. We are still living in our house, in Golden with our kitty – Scotty. This post has some pics from the past year and a half. More posts will be coming.

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Scooter Sees Light of Day

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The purple scooter has gone outside and is staying outside.  Zayne received the scooter last year during the winter and liked riding it in the house.  She did not want to ride the scooter 20150810_174610outside; probably for the same reason that she wouldn’t ride her bike – lack of stamina.  When she got home from the hospital, I packed away all outdoor riding toys so she would not be tempted to break her sternum restrictions.  The scooter was left in the house, because it is stable and she didn’t do much on it.  After transplant, the indoor scooter became a danger because she was going wild and fast.  Indoor riding had to be restricted, but the day her restrictions were lifted, she was riding fast outdoors and not looking back.  We ride scooters every day (I got one too, since I do not want to be left out of the fun).

 

Zayne is down to 2 medicines twice each day, and only one blood draw each week.  She still is seen at cardiology clinic twice each week and receives an echo and ECG each visit.  Zayne is 20150813_080121doing well and doesn’t have any graft specific antibodies (that is a good thing – no antibody rejection for her new heart).  I think she is getting tired of clinic visits, getting poked, and being told what to do all of the time.  She is not cooperating during the visits.  It took 2 nurses to try and get a height while Zayne laughed and kept her heels off the floor.

It seems to be snake season in Colorado.  In the past week, we have come across 3 garter snakes that meet unfortunate circumstances (car tires and garage door).  Zayne decided that she should earn a dollar for each snake.  Somehow, she corrupted the idea that paid her money for spotting wild animals while on car trips.  She was so excited, that I had to pay up.

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We just watched the US Pro Challenge bike race go by our neighborhood.  There was so much build up and excitement for 10 seconds of the Peloton going by.  Zayne said “is that all?”
She was a little disappointed that there wasn’t really much to see.20150823_130922

Still doing a lot of creek visits.  She really enjoys poking at the water with a ‘fishing stick’.  With the nice weather, there are a lot of people playing on the water.  So far, she isn’t interested in creek swimming or tubing.  However, she is excited to start swim lessons next week.  Before transplant, she got very tired in the pool and didn’t make much progress.  I’m thinking that the lessons are going to be a different experience for her.  Hiking has been different – she hiked on her own 2 feet all the way up South Table Mountain to Castle Rock.  It took a long time, but she made it.  At least we didn’t run into any of the rattlesnakes that other hikers encountered.

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Painted lady being set free

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Playing at Clear Creek

 

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Leading the way on a hike

 

 

 

 

 

 

 

 

 

 

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First time on Castle Rock in Golden with new heart

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First Hike

Zayne did amazing on her first hikes with her new heart.  She actually went uphill on her own 2 legs (with some help on the really steep sections).  She made it to 20150731_155149the waterfall (Treasure Falls at the bottom of Wolf Creek Pass) and enjoyed the spray from the falls.  She ran 20150731_153346down the entire path to go back to the car and asked if she could hike back to the falls.  The next day, an uphill (are there any other kinds of hikes in Colorado) hike to Opal Lake challenged the muscles in her legs.  We took lots of rests, but the distant thunder made me want to get to the lake at a quicker pace.  She walked about 1/2 way until I put her in the backpack and continued the trudge while carrying nearly 50 lbs.  She better start hiking on her own more, because I can’t handle the pack getting much heavier.  I keep telling Zayne that I hope I don’t drop her when taking the pack on and off.20150801_130020

Even though Zayne is not allowed to swim (incision is still healing), she thoroughly enjoyed wading in the Pagosa River holding a bindweed flower and her ‘fishing stick’.  She even got to touch some hot spring water along the river, but seemed to prefer cold water.

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Back home, Zayne is still a bundle of energy and walked around Golden showing off her new ‘Recycled Parts Inside’ t-shirt.

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Baking and Tasting

The last time we made a cake, Zayne would only eat the flour.  What a difference a heart transplant makes – she actually 20150718_125908tried sugar, salt, baking powder, cocoa, butter, and vanilla.  She still likes her old favorites – flour (I don’t understand this one) and vanilla.  Finally, sugar has made the ‘like’ list; Zayne must be on the mend.  Also, butter is back after a 1 yr hiatus.

* Update: * I’ve been asked if Zayne has eaten the cake.  She eats the icing.  Does that count?

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When I tire of having races in the house, we go out for walks.  For some reason, she can run around indoors a lot more than outdoors.  Benefits to walking along the creek include playing in the water with a stick or throwing rocks.

Racing after prairie dogs seemed to be the most running that I’ve seen outside.  I’ll have to find a colony near the house

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Holter Monitor

Zayne is having cardiac check-ups every month.  Since it has been over 1 year, it was time to wear the Holter Monitor (basically, a 24-hr EKG).    She has experience wearing one at least once per year since she was wearing onesies.  Just because she has done it before, doesn’t mean she likes it.  At least she is getting better at wearing it and not crying.  It seems that  Zayne still has issues with the adhesives (just like Mommy and others in the family).  Hopefully, the hospital can accommodate her skin sensitivity when she goes in for her transplant.

We are still in wait mode for the transplant, and don’t know where Zayne stands on the waiting list.  We anxiously await the call ( (I really mean dread) .

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Chasing a bunny

Riding bike and wearing Holter Monitor

Holter bike riding

Adhesive problems

Not comfortable and starting to blister

 

Zayne wants to share a couple of pics of our second brood of baby robins.  The mamma takes away the shells and the poop.

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20150605_132320First time fishing.

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Clear Creek Walk

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Zayne was in a walking mood on this cool spring day.  It is confusing because she wanted to walk and did OK, but gets out of breath going up any incline.  I carried her through the rough spots and she would ask to come down to continue walking on the flats.

Cute goslings are running about and we only got hissed at a few times.  The local feed store still has chicks to admire, but some are starting to get feathers.

Time is ticking and Zayne is accruing time.

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Train Ride

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Stream train day at Colorado Railroad Museum.  Enjoying a ride in a car from 1880.

First outing after a cold with 1 week of fever and pulmonary edema.  Zayne was gracious and gave her cold to her Mommy.

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