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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.

Saturday, June 27, 2015

The good, the grateful, the messy, and the ugly...

*I will be talking about poop, peep and nursing...  This is your fair warning.

It's been an amazing couple of weeks. Filled to the tippy top with adventure and struggles. Fathers Day we had the Homers over for a BBQ.. Uncle Pickles (Ryan) was in town  which was extra special. There aren't any pictures to document this day. Only memories of laughing and Gigi; my little niece trying to climb into the dishwasher while Alex and Eden unload. 
We were so excited to have family all together we planned Alex's baptism. 
I am so thankful that Alex made this choice. The room was filled to standing room only. The joy was palpable. 
Each and every milestone that this boy achieves reminds us of the amazing gift of life and his new heart. We were so lucky to have so many of our loved ones support him. 




He and Ry were then whisked away to Yellowstone with papa Homer, uncle pickles, auntie Lisha, Gracie and Gigi. 

They stopped at Grandma and grandpa Great Eiman's for lunch and loves.
It was the first time Gator had been this far away from parents and the hospital in a long long time. This is what we were always hoping and praying for... LIFE!!!! It was still a little scary for my momma heart. But he was in great hands and all involved had a blast. They made some great memories and loved seeing Old Faithful and going horse back riding.
While those two escaped to nature.. Jeff successfully finished his fourth year riding the MS century. He finished in five hours and ten minutes. I am really impressed with his ability and love for cycling. His mom was his amazing support because I was home loving on the baby. 

I could at least drive, so those of us at home went to see Inside Out! It was darling. I got told off by some lady about parking in the handicap parking. She said I should save that spot for someone who needed it more. As hormonal as I was I really wanted to sit down and cry. She judged me without even knowing anything. But, I have come to believe that maybe her need was greater. I have also learned from her that we jump to judge people way too quickly. I will be a little more patient with others and realize that not every struggle is visible. (Maybe she didn't see MayLee getting out with her oxygen) 
Alex had his last IVIG treatment.. We tried so hard to keep the side effects to a minimum because he wanted to do field day at school. Daddy did all the business of taking him to treatment and to clinic. 
He had mega stinky feet so daddy also gave his piggies a bath. Clinic the next morning went fantastic and everyone of his hospital friends were eager to know how his trip to Yellowstone went and how his new little brother was. 
Ry rocked the last of her days in fourth grade. It blows me away that she is moving into fifth grade. Her report card proves just how hard she worked even though we have had such a wild year. She isn't strong in math but her reading is phenomenal and her French is impressive. I am not strong in math either so trying to help is something I can't do very effectively. Besides not being great at math myself, the new way of doing it requires YouTube for instructional videos.. 
Alex also is moving onto the third grade. He will need lots of help to stay caught up. But he is so excited to start going back to school. He is also excited and so grateful for his amazing teachers this past year that have helped him and taken time to come to our home to keep him in school. He made it to field day. He barfed and had a headache in the morning but tried sleeping it off until the last minute. He was able to do just about everything. 
All the while this little guy has stolen our hearts. He is such a great baby. He has his days and nights mixed up.. So besides being a little tired we all are so grateful that he is with us. At his two week appointment he did great. He did have a deep sacral dimple that needed an ultrasound to rule out tethered spinal cord. We got the great news that his spine is normal. He loved his ultrasound. He laid on the warm gel pad and had his back rubbed.. 



He loves to be held and he loves to eat. Eden has some serious competition for lil momma title now that big sister is home from school. 


I can't even stand his neck meat.. It's so softy and smells so yummy. 
Put him down though and throws a little tantrum. He wants to be held all the live long day. 
Just because I didn't think there was enough going on I decided it was time to get serious about potty training May. So she gave Asher all her diapers and we started wearing panties. Let's just say.. WHAT THE HECK WAS I EVEN THINKING?????
She needs help getting on the potty but I am nursing so I hold the baby with one hand and help her get her undies down with the other. Then we sing, sit, and nurse while she is taking care of business.. There have been occasions when more body fluids ended up on the floor than you can imagine.. Everything that comes out of her, plus fire hose status from me when the baby comes loose and then he spits up.. I am telling you, we are a hot mess. We have been doing a lot of laundry. She has it now and I am tickled. It is sort of a pain at church and stores because she can pee four times in one hour block. Plus we must need to see what each and every potty looks like because she goes before we start shopping and in the middle and at the end. Ry is an amazing helper, even Gator and Eden have stepped up to help out. Daddy and Auntie aren't left out in the potty training either. Good thing we have a great team. 
One thing I love about kids is how they sometimes mess up words. Eden inherited a pair of spandex spankies which she likes to wear under summer dresses and skirts that don't already have a pair built in. She had put on a cute little summer dress but couldn't find them. She came to ask me for help in finding her "smackies", now I laugh every time she twirls and I see her booty clad in  them. Eden crashed into the door and earned herself a goose egg. She had me take a picture so she could see how bad it was. 

Alex has a friend from school who lives on a real live farm. The Peterson family Farm. When he was stuck in the hospital he would FaceTime his buddy Craig. Craig would take him on tours of the farm. When the family found out that their goats would have babies they let Alex name the first girl baby. Well it turns out that the first was a twin.. So he named her Izabella and her twin will be named by a lucky person in a contest.. So cute! I have added my ideas.. I think it would be darling to name the other either whistles for Bells and whistles... Or button for Bella Button.. Hahaha get it?? 

The Fourth of July did not disappoint either. Daddy rode Antalope by moonlight on the 3rd. A night right got home at 1am and then got up early the 4th and rode in the tour of Riverton. Grandma and papa Homer picked up the three oldest for the parade. 

The two little ones stayed home, out of the heat. 
Thank you Pinterest for cute hair ideas.
We had a amazing dinner at Grandma and Papas and then did fireworks together. This was the first year that we have really purchased fireworks. I am pretty sure that fireworks are a daddy job in our family. I have no clue what to get. Gator and daddy got some pretty fun fire works. My favorite were the parachuting ones. The kids, especially Alex loved the fireworks and lighting them. Boys and fire. 
The next day we went to Orem for birthday celebration and family dinner. Getting together is one of my favorite things. We had a blast. It always feels like not enough time. 
We have also been living up our triple digit weather at the splash pad.. 



 If you've made it all the way to end of this post. Sssaaaawweeett! 
There is gobs more coming up.. We are trying to live it up during our three week summer. Plus if I blink my baby will be grown. 







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