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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.

Thursday, March 22, 2018

Some of this and some of that

Here is just a mash up of some of the things we have been up to.

Eden absolutly loves this little snuggle bug... When I told her that I thought she was doing such a great job. She said "well you know, I am very good with my dolls" 


These three heart boys have been friends since they were babies... I love to see them all growing up.
 Having a little dinner out together.
Arlington was in the production of Alladin. She did an amazing job.
One night we had a lighting and thunder storm that was  loud. Asher was going down the stairs when a huge clap of lightening hit and the thunder sounded at the exact same time the sky lit up. It set off car alarms in our circle. It frightened Asher so badly that he fell down the stairs and bit his cheek and lip. Poor baby..
Sometimes he just works on building towers..

Watching Star Wars for the first time ever....Some of you would be incredibly proud that we are finally letting them join the normal people. Alex keep shrieking at everyone to be quit so he can hear. They are all so funny. But Alex is by far the most into it.









MayLee's lost tooth(s)

MayLee was so thrilled to have finally lost her first tooth. She asked me to wiggle it, and I did with a paper towel and wiggled it right out.


The other day, we went to Fiiz and MayLee was waiting for her Pink Poodle and pulled out her second tooth all on her own.




Alex's body doesn't like some things

I think it's interesting, sometimes Alex's body will all the sudden want to get rid of an old stitch that was suppose to dissolve. He has had these stitches in his wrists for years. 




Friday, March 2, 2018

Crazy hair day

Ry always cries about her hair being crazy for this day. But MayLee has fully embraced it. She can handle being crazy every now and then. Ry must be polished and correct. I don't have any reason to explain her need for order, other than, this is how it must be. 

I couldn't find our hair color spray stuff, so a little Crayola marker works perfectly on her blonde head. 

And of course his as well.






Green eggs and ham

Preschool had Green Eggs and Ham day... This whole week has had a theme for each day. For this particular day the kids dressed up in green. 



 Asher wanted me to follow him for his picture. So.......
Mom look at my blocks... This boy... He is almost all the way potty trained. He got Paw Patrol underwear, which he calls panties and I can't change that for some reason. And lots and lots of treats and now he is dry, night and day. The last time he had an accident was about three weeks ago. The reason I say almost, is because, I still put a pull up on him at night worried that he will wake up wet one morning and ruin everything. But he continues to wake up dry.  We believe in bribing during potty training. Asher was extremely motivated by going swimming. So we told him, if he keeps his underpants dry we would go swimming. He has had two trips to the pool, with more scheduled. He is a little fish. I will have to figure out a way to record him. It is amazing how little fear he has. He is smiling while drowning... So I have to keep him only an arms distance away. So I can grab him quick if I need to. MayLee and Asher both stay right by me and the others are off playing and having a riot. We also use matches during potty training. I know I know... It's over now, but when he would go number two we would light a match and he could blow it out, just like an adult. WE LIT THE MATCH, HELD IT, AND DISPOSED OF IT... He only got to blow it out. They are now and always have been way way out of his reach. But, I tell you what, it potty trains boys so fast for number two. It's your birthday in the bathroom every time you go!!! Let me reexplain that he never got to touch the match. And the treats were never ending.... He got one treat for going number one and two for going number two. I will do whatever it takes. We had lots of accidents the first week, and he really uses the "I have to go potty" excuse a lot, especially at church and the grocery store. I think we visit the bathroom at least three times each grocery experience we have. He needs lots and lots of help still... He also has TBS (tight bum syndrome) so I will probably need to assist for a a while. He really won't let anyone take him but me and Daddy. Or the if he is being watched, the adult who is in charge. Standing is a little foreign to me, but we are working on everything. 





Lego team at the capital.

The Lego team got to go up to the State Capitol building and show off their robot and some of the missions it performed. The day they had it planned it snowed and snowed. It took the bus almost three hours. They had to pull over and let the kids use the restroom. It usually only takes about 45 mins to get up there from our school. I think sometimes we forget how to drive in big snow storms, or it's the new to Utah drivers. Because we have slide offs and crashes and all kinds of snow driving problems. After the first big snow driving experience it's like we get our brains back out and remember how to drive. (Rambling) 

Once the team made it up, they had a really great time. 





Valentine's Day Feb 14th 2018

Ryleigh went off to her non-Valentine sharing big girl school. Asher and Jeff are my always Valentines. Alex and Eden had the day off because, off track fell right over Valentine's Day. So we got Miss May ready for Steam club, preschool, and her party.

Heart hair, shirt and lip gloss. She looked fabulous...

It was a huge success. 

We decided to make a big yummy dinner. We passed out Valenines to each other and had fun laughing and talking...... And eating of course.




Jeff got me the most beautiful flowers, I forgot to snap a photo, they are in the back corner of May's photo. He always out gifts me by a land slide.