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Life with a boy and his Hypoplastic Left heart Syndrome, now Heart transplant and partial Liver from Aspergillius. Also, a girl and her Tethered Spinal Cord Syndrome, Neuro Endocrine Cell Hypoplasia, Lumbar Hemangioma, asymmetrical gluteal cleft, Pectus Carinatum and two Super Sisters and one yummy baby brother.

Tuesday, May 15, 2018

Trolly Square

We have been trying to go on some fun adventures while the kids have been off track. Yesterday Daddy took us to lunch. We beat daddy to the location at Trolly Square so we headed off to find a Geocache... This was a super fun one to find on the water tower. We also found this little light up miniature of the history of Trolly Square. Kind of cool to have neat things near us. Ry is just biding her time until she is out of school so she can have adventures and lunch with Daddy too.





Primary Children's Give-a-thon

We are incredibly lucky to be part of our community. I say it all the time, but, there is something amazing about living here in Utah. People are incredibly generous, and not just with their money, but with their time. We are amazed by the support of those who help us.

Many people who find themselves at Primary Children's Hospital, also find themselves in great distress. I would be lying if I didn't say, it is a place that brings out the very worse in us. Why? because we are usually on the extreme side of things, extremely stressed, sad, unanswered, under financed and so many other things. The hospital and staff know this and they want your experience to be as good as possible. I can imagine that if you are still feeling some of these things then you won't be having a Disney experience, but now that we have moved beyond our most stressful times it is easy to see how much and how often we were ministered to by this amazing hospital, and everyone in our community who supports it. Because, we are aware it would not be that way without the community support. I am most reminded when the children are invited to be ambassadors. Alex and MayLee were asked to come to the hospital during the Give-a-thon. We got to see all of those with a common goal to help the hospital. It felt more like a party than anything. With slush, popcorn, cheerleaders and face paint they all enjoyed it. We talked on 100.3 with Rebecka (oh. my. gosh.... this is my radio station.. so to meet Rebecka was really really cool) We also talked on 103.5 The Arrow. that was also really cool. We did a little bit with the Morning show. All in all we had a great time.




















Bike ride to geocache

I know I can get the kids to bike farther if we are trying to find geocaches. We were able to find 5 caches in all. Alex found the first one, Eden the next, then MayLee, I made them let Asher find the next and MayLee found the last. On one of the finds, MayLee stopped so fast with me behind her that I was going to crash. I couldn't get unclipped from my pedals fast enough and ended up falling over. I was so embarrassed but not hurt. We were on the trail near Mountain view corridor, a truck saw me fall and whipped around and came back to see if I was alright. I told him I was fine and that my pride was mostly hurt, and I am pretty sure I have loads of padding. Then right in the middle of our ride, Eden had to tinkle.. I had to teach her the fine art of squatting, without peeping on your shoes... Asher thought it was awesome to water the weeds. It is a huge adventure to take out the littles... It takes almost as long to get ready as it does to go on the actual ride. But I think it's a great investment for our time.




This was actually the next day at Alex's ortho appointment.. Well, after Alex's appointment. We have never found a Geocache with this many Trackable caches (a small item with a number that tracks its location). One of our TB came all the way from Norway. We are excited to find a new home for it.



Gone fish'in

I have been trying to find some fish heads for my tomatoe plants this year. I read that they are a perfect fertilizer. I saved a bunch of shrimp tails so I am hoping that will work. Because we didn't catch anything. I got Alex a fishing license and he had a pole he bought last year, but we are not fishing experts what-so-ever. I don't even know which kind of lure or bait to use. But we had a great time practicing casting out and playing in the water. Alex has asked me every day sense we last went to go back and fish again. I think we are going to go back with good old worms, I ended up reading a bit on the our little lake and we were in the right location, now we just need to see if we catch something.






May 3rd, Arrow of Light

I am so thankful for great scout leaders for Alex to have accomplished his Arrow of Light. He really likes participating and learning about new things. I am excited for him to start Eleven year old scouts. His first camp out is next week. Just an overnight camp.





Getting excited for Hershey

Hershey is going to be awesome... We have the MOST AWESOMEST opportunity to take the family to Hershey Penn..... We have been working with the most amazing folks at Hershey and they have just about spoiled our family. We got this package from Diana, we opened it as a family... Daddy built up all this crazy excitement and then poured the contents of the box out on the table. So much yummy chocolate and Twizzlers. All of the brochures of things to do were thoroughly looked over. Especially by the two littles who think this is going to be all about them.

Happy Birthday Alex (11)

Alex is 11, I can hardly believe it sometimes. I am so thankful we get to celebrate another birthday with him. His health has been really great this year and we are starting to feel like he is just a typical boy. He had a great birthday. It was tough to celebrate the day of, because he had two shows of Peter Pan on his actual day, but we had a huge family party on Sunday. He is all caught up with all of the Star Wars movies that are PG now (owns them, hasn't watched them all yet), and he is excited about his new Fitbit. It was definitely an epic year.

Play'in at the park

On a sunny spring day, we hit the park. This is just a block from our house and is a decent little place to play for a bit.  We have quite a few parks near us. We have been trying to go to all of them near our home so that we can cross them off a rather long list. Some parks require a second visit so we can really enjoy it. I need to come up with a solid list so that we can figure out what we have close by and a rating system for each one, and based on the structures, who it suits the best... DONE....My next project.