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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.

Monday, August 15, 2016

I blinked..

I just barely feel successful for getting a post up, then four weeks pass by.. 

Eden started Kindergarten. She loves it, she loves Mrs. Mac, she loves the rules, she has so many stories to tell me when she gets home. I stand there amazed that she loves school. I am giving all the credit to Miss Joey her preschool teacher, who prepares each of my kids so well and makes learning fun, when kinder rolls around they are so excited to be scholastically fed they are bursting.... Eden isn't the very very best at everything yet, but we are practicing at home and loving it is half the battle. I just tell her everyday that she is so lucky she gets to go and that I can't wait to hear all about it, I thought she might 'need' me more, but nope! 
Shout out to Bobbi for letting us borrow your sign.. 

We love when the Tour of Utah comes to town. This year it came almost to our front yard. We stood on Mountain View corridor and cheered on the circuit.. Then  Jeff and I volunteered at the Bountiful leg. We brought all the kids to help cheer and see how awesome it was. Next year we would love to see a finish line.. 



Eden powered smoothy maker

This guy just had a birthday!! 
Jeff has put in a ton of hours on his bike preparing and training... He even did Hotter Than Heck. A ride he doesn't love that much... But this year it was a pretty great ride, everything except the bugs. 

Mr. Smarty pants figured out how to unlatch the child gate at the top of the stairs.. Even with me rigging it closed with a rubber band and a carabiner he figured out how to pull the rubber band hard enough to bust it. So I spent nearly an entire day sitting on the stairs while he practiced going up and down a million and forty nine times. I didn't get much accomplished that day other then making sure he didn't tumble down the stairs.



Clearly, I need to let her style her hair more. 
Well sisters sort of think alike because a couple of days later Eden also did her own hair. 



The crazy doesn't stop there... Alex fit himself into a pair of Asher's shorts. We had to peel them off.. 

To top it all off, we tracked off..Hurray for summer part B.. 













Sunday, July 31, 2016

Just like that!!

And, just like that the kids are back in school. 

BUT... 

Before I go there, here is how we finished out the rest of our short summer. 
We finally made it to Fairy Forest. A fun little place to visit up by Mirror Lake and Kamas. It's a baby friendly hike. Once you make it to were the Fairies are people have painted rocks, organized little homes, and set up wind chimes. We didn't this time because we just wanted to see it, but maybe next time we visit I will be more prepared. I let Eden take my phone and take pictures. 


There is a tiny lady bug rock between her feet. 


 After our "hike" we had a picnic..





Adventures are fun and scary all at the same time. I wasn't totally sure where I was going. Taking five little kids somewhere I haven't ever been can be a scary thing. We found it and had fun.. Whew!! 

Our primary summer activity is so amazing. They put a huge slip and slide on our parks hill. There is a water melon eating contest and water games. 



We got to attend our family reunion!! 










Gator had to ask for a ride in grandpa greats gorgeous red truck! 
Jeff rode most of the way home from the reunion. He had a terrible head wind, coupled with the fires so the wind was bad, it was really long and hot. We are here waiting for him. There is a tiny speck that we think is him so we took off to find him. Turns out it wasn't him so we headed back to our look out. I wasn't perfectly sure where he wanted me to wait and wasn't at the spot when he passed. I make terrible SWAG. But Ash is sure watching for him. 

This little hat is called an O2 kid lid. It is a great solution to the tender grips. While I love the fact that she doesn't have her stickers on her cheeks, this sort of pops off her head too. Maybe there is no good thing.. For now this is sort of working.. 

AND........ 
Ry and Alex started school! They have both really enjoyed being back and like their teachers. 


Eden starts later this week. Sooooo exciting. 

















Tuesday, July 12, 2016

More than Wee, even still bigger than Wee, this is a freaking HUGE post....

Asher- WOW!!! This boy is all over the place, he just runs around all day until he crashes. Yesterday I sat with him for an hour while he practiced the stairs. Going up one stair, coming back down, trying to figure out how to do more than one at a time and sliding on his belly. He even decided on multiple occasions to just wing it and go down like a big person. Only to end up flopped over in my arms. It is going to take some more practice. We have a gate at the top of the stairs that he will try to open to see if anyone has forgotten to latch. May is usually kind of forgetful about this detail and this morning he ended up falling down the first flight of stairs to the landing. No injuries that are apparent. But Gator had bruises on top of bruises at this age and so I am assuming the same for this crazy guy.




He loves balls too. He says ball like a little grunt. "BAA" BAA" .... mostly he just has to look in the general direction of the item he wants and we all run to get it.


 Man, he is stingy with his kisses. I very rarely get a little smooch from him. But I try my darndest to steal as many as possible. After baths and he is all lotion-e and smells just so yummy that is prime smooch the baby time. Somehow he ended up with a nasty case of Croup right in the middle of summer. I can do most of the detective work at home, pulse ox testing and such, but this morning he was wheezing and cough so badly that I decide I should run him into be seen. Mind you, we didn't sleep and I still have that fear of being the parent who is always taking their kids in. But the doctor reassured me that this case of Croup was legit and he definitely need the oral steroid and then upper air way nebs to open his airway. He is finally sleeping and resting. My job now; to keep all the other people in this house who can catch things easily, away from the sicky. This is supposed to be my panicked face.. 



MayLee- Freak out with me now..... May is doing all the testing to be off oxygen... We met with Doctor Uchida (I have been on a wait list for months and a spot popped open, he is the best so of course the wait is long). He was so impressed that she didn't need to be hospitalized last winter and she was 96% in his office, that he wants to trial her off at night as well. So, at home she was on 3/4 liters of oxygen to sleep. Each night we have slowly been lowering her liter flow until she was at 1/4 liter and maintaing sats above 90%. She has done great so far. Last night we did the testing on room air. Her sats weren't that great. BOOOOO... I am assuming we won't be able to go off yet. It isn't too bad only at night. I do need to figure out another system for keeping her oxygen on her. I usually cut a tender grip in half, and it can be used for a couple of days. But I would love to have those off of her cheeks all together. I have researched a little and might try my hand at psewing a little hat to wear. It can't be a head band because that would slide off too easily. I think it also needs to breath well so she isn't super hot while she sleeps... I will be looking around trying to create something that works. She also will be going to Doctor Martin (cardiology) to check her heart and make sure that she doesn't show any signs of pulmonary artery issues and that her heart can handle the workload of her lungs without the extra oxygen push. She will also see Doctor Bollo to see how her tethered spinal cord syndrome and her pectus carnatum is progressing. Hopefully everything is just awesome.
She loves having the kids around while not in school and is gearing up for preschool with Miss Joey in the fall. She loves to play Ponies, Barbies, Littlest Pet shop and just about any other imaginary game. She can play for hours. She also loves to veg and watch her iPod. I have to really limit her because she could be on it for a long time. She loves to watch kids youtube. The shows with kids playing with their own ponies, littlest pet shop and Barbies.




Talk about a bossy pants. She has such a tender sweet side too, but she must have a little streak of fire in her blood because she can get super feisty. Maybe it's the fact that she is a fighter (for her health) too. I completely believe that kids who have a little extra health challenges need a little extra fight so that they will try super hard to stay healthy. Despite best efforts, sometimes, that battle is very difficult. I have watched many of our friends leave this earthy life this past week. My heart just aches for their families who must miss them so much. 
UPDATE: I got a call today, May does not get to come off of oxygen. (Frownie face) and she is supposed to be on a pulse ox every night.. Plus also, she hasn't been feeling great, so she is up to a full liter and is only at 92%... I gave her her inhaler tonight which opened her lungs some. 


Eden- She is going to Kindergarten.... I am so excited for her because she is completely thrilled. She lost a tooth and lets just say it was an event. Every day we had to asses the loose-ness and then decide if it could possibly come out. Finally I thought we should just floss it. I wedged the floss underneath and POP!!!! it shot me in the eye, but it was out and she was so happy to put it under her pillow for the tooth fairy. 
She is getting so mature and is really a great helper. I have been putting together a job/reward system and she wants me to finish quick because she wants to start getting rewards. She is at that stage when friends and having friends over to play is a really big deal. She would love to invite someone over or go to their house to play all the time. Well in theory it would be awesome, as she gets tired and cranky fast and usually ends up wanting to come home or mean to the friend. I worry about that all the time, I feel like I am always teaching respect and kindness toward others. We continue our daily reinforcement of these things especially toward siblings. Eden can't wait for her birthday. I am pretty sure she thinks this is the biggest birthday she will ever have. Six is kind of a big deal. Just saying.




Alex- This past couple of weeks must seem to blur together. We have been busy with so many things for Alex. He finished out the school year and finally did most of second grade, we ended up having him go back to second after the holidays because he simply had too many holes in his core education. He missed his entire second grade year and half of his first grade year. There was so much French that he couldn't understand and in English he was obviously behind. His size is about that of a second grader too. The only thing (I thought that he might be further ahead on was his maturity level. But No, he is pretty much the same there too). He ended the year on a N reading level and is just skirting by. But he is back and is learning everyday. I know third grade will be such a better year now that he has had second grade instruction. He has had quite a few doctors visits and a few not awesome run ins. 
He is currently working through a very very nasty ear infection and at the same time trying to deal with C-diff again. It adds a lot more meds to his little boxes but we are trying to get him back to being awesome. He had a transplant clinic last week and his Echo of his new heart is amazing. We are so thankful to Julie and her family.  Our little donor sweetened up her heart before she shared with Alex because he has become more compassionate and gentle. I am still in awe of our donor and her family and their selfless decision.
Alex also has the opportunity this year to be the Champion Child for Children's Miracle Network and Primary Childrens Hospital. He has the unique chance to share his story and thank those in the community and corporate sponsors for helping make Primary Children's Hospital so amazing. And we know exactly how those funds are collected and we know and have first hand knowledge of how they bless every life of kids who goes to PCH. For instance, Gator loves some of these things..... Child life, Physical therapy gym, music therapy, Bingo Wednesday, and the Playroom. I too have had an experience when I am sure angels must have been watching over me that day because, it was shortly after Alex's transplant. He was stable and was finally able to start thinking about coming home. The medications he would need are so extensive folks that I had to have a training on how to dole them out, store them and how to give them at proper times. Some interact with others meaning you can't just give a missed dose at any random time. I know lots of my friends and family know that there are alarms on my phone that go off at the craziest times. Those are med alarms to help my tired brain. Anyway, after my training I went down to the pharmacy to retrieve that large amounts of medications... One med, only one, ONE MEDICATION was more than my house payment for one months supply... And we had multiple with similar out of pocket expenses. We had a little money socked away because we knew that this might be so. However we had no idea what to plan for. I knew these meds were life saving to my son and I also knew eating would be important. So I had inner panic until the person said "I see this is going to be quite expensive, maybe go over and apply for some grants" I couldn't believe that such things existed. I ended up paying a fraction of what I was going to originally. Most people don't even know when they have paid their little dollar at Costco or Walmart and basically helped us so drastically. Most people don't know that they have helped other kids just like mine. I dare say most people don't know that if they have made even the smallest donation and somehow someone they love ends up going to the hospital they end up getting back their donation tenfold???? It's true folks. It is such a blessing. So being a Champion means we actually get to tell people about this. Alex gets to share why we think Primary Children's Hospital is the BEST. Part of being a Champion is going on tour. We get to go on two. Our first tour was to Washington DC. Ummmmmm.... It was the BOMB.... We did so much, I think we ran the kids into the ground with everything that went on. First of all we flew Delta... It was so much fun to meet the pilots, sit in their chairs, ask questions about all those buttons and be amazed that they can get a huge hunk of metal with a whole ton of people up in the air.... 


When we arrived in DC their was a huge welcome party. Alex was giving High fives and was so pumped to be there. He totally felt like he had "Celebrity Status".  We stayed at the Marriott, certainly the nicest hotel I have ever stayed in. 


We had a little bit of time before an evening event so we decided to walk over to a BBQ festival. The food was fantastic. Then we dressed up for a super hero dessert party. I loved the ice-cream bar. You will not even believe that we also got cupcakes from DC cupcakes.. Like the ones from the TV show.. And they were as good as they look on TV. We took photos with the characters and had a great time. 



The next day, breakfast was catered and was fantastic. Then we saw tons of sights, the white house, Washington monument, Arlington cemetery, and lots of neat things along the route of the BIG BUS, and china town. We walked a ton that day. 


Both Julie and Alex had heart transplants. Alexs donors' name is Julie. Kind of a neat thing. 



Monday Alex had a photo shoot and then he and daddy went to meet with the surgeon general. It was an amazing experience. In the end the surgeon general opened up the floor for questions. One of the other champions asked him how he would be helping Children's miracle network. He was a little taken aback. He asked her back if she had any ideas how he could. She said "you could buy a balloon" another mother had one in her purse. He asked how much they were and she said they were a dollar. He pulled 100.00$ out of his very own pocket and handed it to her saying he would do a little better than that. What an amazing heart. While The boys were out Ry and I visited the American history museum. It was so amazing. It was everything Ry had been learning about in school this year and she fell in love with history. To actually see things that existed solidified everything she had been taught. I personally loved the gowns worn at each inaugural ball worn by the first ladies. If Hillary Clinton is voted in, does that make Bill Clinton the First Man? If so will his tuxedo go on display with the gowns???? These silly questions crossed my mind. 




When the guys were done we visited the wax museum. That was very cool. I couldn't believe how real some of the figures looked.
 At night we went to a Nationals Major league Baseball game. They won against the Mets 11 to 4. The kids got to go right out on the field before hand, be introduced and wave. It drizzled a little bit but we stayed totally dry. 



Tuesday we had another amazing breakfast. George and Martha Washington spoke to us this day. I think they must have forgotten that there were very little kids in attendance because although I thoroughly enjoyed a lengthy history lesson, my kids along with everyone else under 20 years old were wiggly and trying desperately to stay polite. 


We got to eat lunch on Capital Hill. This lunch was set up by our very own Governor Herbert. Who must have been extremely busy this day, he couldn't eat with us and we thought he wasn't around anymore so we headed off to the Spy Museum, an hour and a half later his schedule freed up but we were so far away we couldn't get back in time to see him. Maybe the next time he is home in Utah we can have a visit here. Does anyone have any connections??? I will even provide the lunch from his favorite place???? Jeff and I deliberated back an forth about letting Ry and Alex visit the holocaust museum. We understand the gravity of these events, and how hard it would be to view and process information like this. In the end we decided to teach them about love, respect and show them what hatred can do. We reverently walked through the museum. We wished we could have spent more time there, getting there an hour before closing isn't what I would suggest for the whole experience. I was particularly shocked by the cut off piles of hair. Being a hair dresser I see large amounts of hair all the time. For some reason this was just so unreal to me. It was so so much. I couldn't believe it. That one display rocked my soul in such a personal way. I don't know how I would have responded if I would have been put in that situation.
We laid out enough time to go swimming this day. Alex could go somewhere far away and all he wants to do is go swimming in the hotel pool. 
He is so crazy. 
Wednesday morning we took a real live taxi to a bike shop. Jeff was looking for something he could incorporate his experiences/trip memories into his hobby. So he wanted a neat sticker, shirt or a Jersey. We weren't too lucky, which is sad because if we lived somewhere like this there would be a ton to explore on a bike. 
We flew home exhausted, Hot, but happy.
was sure they littles had grown a foot when I got home. Alex still had a day and a half of school left over. He got up the next morning to finish everything off. We have made it to Seven Peaks once and totally enjoyed ourselves. The only person to fry was me. But swimming it a top priority on Alex's Summer to do list.


Ryleigh- If going on tour with us and finishing school with awesome grades isn't enough .. 




Ry also got to go to Camp Tracy for Activity day Girls. This is the first year that they have invited Activity day girls to day camp like the guys. It was an absolutely amazing experience. She tried and learned so many new and interesting things. To name off some of the fun things: Boating, Archery, crafts, swimming, first aid, skits, rifle shooting, rock climbing, and so much more. I am so thankful she got to try a few things she was nervous about. Like shooting. She is actually a pretty good shot.




 She also had a piano recital that she did so great at. She played lovely and I think she has a real talent for the piano.
Her teachers (Grandma Homer and Sarah Armes have been perfect) 

*warning* going to talk about peep
 I know she is going to die when I tell this story but it is hilarious and needs to be part of our family story. A couple of Sundays ago we decided to go up the canyon near our home and drive the winding roads and see the views. Well, we no sooner got 5 minutes up the canyon when Maylee tells us she has to go potty. She is an urgent situation all the time. She must wait until she has to go so bad when she tells us that we are always running to the nearest potty. AND we know the girl has bathroom issues. So there is no place to take her and we must wait a few minutes until we can find an appropriate place to pull off. When we do finally pull off both Eden and Alex also have to go... All three hop out and I help May get situated with a full moon exposed. What I didn't account for is the slight breeze. I swear it picks up just as she is going and everything comes blowing back on to MY foot.... Finished and relieved I look over to see Alex is finishing up his business and Eden appears to be standing the exact same way as Alex. Unfortunately with completely different results. Wrong plumbing my dear. Now there are two of us who have peep on us. We go up the canyon and decide to flip around when May announces that she has to go again. We head back down the canyon. Ry is glad for this bit of news because she too has to go. We find a spot, pull over and start getting everyone out. May looks a bit wet on her backside. We waited too long because she peed all over her booster, while she was walking out of the car, and a little on the ground. I strip of her clothing and get back up stuff from the back of the car. Alex hops out too. Goes again and gets back in. Ry heads off for a secluded spot and try as she might get stage freight and can't go. She hops back in the car deciding to hold it until we get home. You know that feeling of pain when you have to go so bad, but you can't go now cause you are in the car? It was that one time... Ry is crying cause she has to GO.... We pull over yet again and I tell her to squat behind the barrier and block anyones view. She totally peed near the bones of some dead animal. There is an art to going outside. Apparently an art that I have shielded my children from. We need to camp more. Maybe it was the fact that we haven't been able to really get a true camping experience with kids on oxygen and needing new hearts. I don't know, could be that.

Me- I just run... and then I try and clean up after the whirlwind. Not very successfully lately either... And I have been trying to keep up my garden.
So many yummy things to come.

Jeff- Besides working and doing his church calling, summer is busy because this is when you can actually ride your bike outside in Utah. So Jeff has been trying to get in miles to prepare for his big ride.  Doing training rides and trying to keep up with the list of things I need help with. So far he has managed it all. With only a few upset stomach episodes on his part and exhaustion.. He if feeling a little more prepared after every ride.