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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.

Friday, February 28, 2014

Lego movie

We finally went to see the Lego movie... Grandma and Papa H treated us to it. Daddy and I took turns with May. She is not a fan of movies yet. We each got to see a portion of the movie.. So I can't wait to see how it ends and Jeff would like to see the beginning.. After the movie we went to dinner.. Eden wanted to use my phone to take some photos until her dinner came. We got some awesome shots. 
Enjoy her handy work! 








The other day the two little girls were having a bath... May got the soap and dropped it between her legs. Eden was extremely concerned and told her "May don't mess with the soap May, it makes your crotch itch.. And that feels gwoss (gross)" haha! Watch'n out for her peeps. 

Then as I was getting her out and snuggled in her towel she reached up and patted my cheek and said "We aww best fwiends fo-ev-a (we are best friends forever)" then proceeded with hand on hip and total diva attitude to say "Gator, me and mommy are best friends forever!" 
I totally agree! BFFs 

May loves to wash her own hair!! 











Saturday, February 22, 2014

Ramblings

My bucket is full to the brim. This weekend we had the opportunity to have stake conference. This has a whole new level of awesome because Jeff is a bishop. I get to ride his tail wind and enjoy all the cool things that happen. Elder Summerhays and President Murphy visited our home. Having a visit from president Murphy is amazing. We always wish he could just stay and hang out for hours while we soak up his awesomeness. Having Elder Summerhays was wonderful too. I was a mass ball of stress, thinking my children would act... Well, like children. And they did. Eden untied his shoes and crawled onto his lap... May wiggled and giggled... Alex brought up the small chairs and places his right next to President Murphy with his hand resting on his arm rest. Ry was so behaved and understood who was visiting. Most of the visit is personal to our family. But, feeling the love of our Savior and hearing that testimony brought peace and comfort to us all. Then we attended the Bishop's dinner. We visited with the other bishops and wives, along with the members of the stake presidency and Elder and Sister Summerhays. Not only did we get a super dinner, but Elder Summerhays spoke to us while we finished. During the conference he testified of the Savior. I came away eager to be a better mother, wife and friend... By doing this I will be a better member of the Church. It really has been a great weekend. 
One thing I keep thinking is.... Everyone has trials. While my trials seem to be big to someone else... Their trials or trials I hear about seem so unbearable. 
I have found other blogs that inspire me. Ash from Lil blue boo, had a mantra that I want to follow. CHOOSE JOY! 
I love it!!! 
I also love Meg from Meg's motivational minute movies. She has a smile as she relearns how to live! 

The things that these ladies do make me believe that anything that I need to endure can be done with grace. 

There are more and more women that I am amazed by all the time! 

Wow!!! It's been awesome!!! 

The pager and Sibs class


Tuesday May had Neuro clinic. The Doctor said her tethered cord surgery has healed and she doesn't have any signs that would indicate a re-tether. She is growing beautifully and from his stand point looking great. Thank you Doctor, for some awesome news. We will take what we can get. The only bad news is our Dr. Is retiring. So great for him, sad for us because we really like him. We follow up with a new doc in a year. 
Yesterday we had transplant clinic. We decided to move forward with IVIG. So we had to get that set up. We also got the PAGER. When they handed it to me Ry asked what is was. She is not familiar with those things. With everything in place, it feels really real. Alex has been listed for 14 days today. We also had a sibling class with the wonderful Miss Jen. We adore her. She is the child life specialist. The kids did play therapy with hospital buddies. I think they are one of the most healing tools for my children. They are these little stuffed dolls with a hospital gown on. You also get a Dr. bag filled with things you might see and use during a hospital visit. The dolls help the kids to try out the things so it makes them less scared. My kids have made and played with a bunch of these dolls, but each time is a different learning experience for them. I saved their dolls in the past with the date so they could have them later. I plan on putting these new dolls in a bag that can go back and forth from the hospital with us. That way we can reuse them. I always feel a little frazzled when I have all the kids with me. But, I am learning that I need to be more prepared. I thought I was prepared before, I just have plans to make it really easy on me. Starting with a snack bag that stays in the car. I do this in the summer. I realize now that I need to have it at the ready all year round. When little tummies growl, their fun meter is empty. 



This is the lovely Miss Jen. She is helping Eden to place an actual IV then give meds to her doll through the IV. We also met Miss Michelle, another amazing transplant team member. I have been so impressed by each one. They are all so nice. Then yesterday afternoon we ran over to the school. I am on the PTA and we were feeding the teachers for parent teacher night. Cafe' Rio catered for us. It was fantastic and a huge hit! 




Sunday, February 16, 2014

Drive way=1... MayLee=0

Ski slope, sledding hill, drive way of death... I have used these terms to describe the accent to our garage.. With good reason. MayLee tried navigating the drive for the first time and it was way too crazy for her little toddle!!!
Her face caught her fall. Poor little face looks abused! 

Mom and Ry

The activity days leaders really did a fantastic job of the mother daughter Valentine party!!! 

My Munchie

Three is a busy/full age... My helper wants to try everything... 

 

#ournormallife



Anyone who has a heart or lung baby sees these things on a regular basis.. 







Saturday, February 15, 2014

Eden says..

I was changing Mays nappy this morning. Gator heard Eden waking up and went into her room.. "Get out" she shrieked... She is as pleasent as her mommy in the morning. I told Gator to come on out, for now... I finished up and went into her room. She was still all snuggled in her bed. 
" I just wanted you to tuck me OUT of my bed"
Hahaha!!! 

Sunday, February 9, 2014

What's this??

Ha ha ha!! I asked Eden what that little spot was? 
It cracked me up to hear her say
-her Delly Button

Saturday, February 8, 2014

Nebs


I get MayLee to happily do her Nebs by giving her treats! 





Day 2

We have made it to day 2 and if you are questioning exactly what that means.. It means something huge!!! Yesterday was the first day of Congenital Heart Defect Awareness week.. It was also the first day Alex was listed for a new heart! It is such a blessing to live in a time when we have medicine to help us have more time with him. He is such a fun and sweet boy! Alex is listed 1B status and has 86% avoids.. In heart world talk, the odds are stacked against us. But, we have so many incredible blessings that we are so thankful for. We have each other at home. Being listed at 1B means he gets to live as normal as possible. It also means that I can take care of my sweet girlies who need me. All of the kids are so young. The baby has medical needs and doctor appointments that need to be taken care of as well. We are able to manage all of her needs with this status.
I thought I would take pictures of a few things that are normal to us but different to others... Add them here... Just for you!! 

#ournormallife




Wednesday, February 5, 2014

Thank you Pinterest

In my attempt to get healthy, and to deal with stresses that arise I have been crafting. I am so thankful for Pinterest. I can spend a good amount of my eat a snack stress finding something cute to do.. These two little projects cost less than 4.50 to make for both... Hurray!! 
I have been so amazed by string art! I think it is so interesting.. So here is the official 'heart strings' String art. The string was the most expensive part of both projects... There is oodles left over if you would like to give this a try too, just give me a buzz and you can have the string. 
Thanks to Walmart and Dollar Tree for the frame, I gave this a try!! It is a paint sample.. Well, four paint samples.. The sample had all seven colors on one strip. Then I used my Cricket and my one and only cartage has a heart! Whew!!! I have plans to do something similar for St. Patricks... Ombré is fun... This needs a little dressing up.. I am not sure yet how? So for now it will have to do.. 



Saturday is a special day..

Changing sheets can actually be fun!!! We played parachute for a good 20 minutes then jumped into the piles of pillows and quilts!!! 
This is Gator doing a beautiful tuck!

Eden is performing the belly fall fake out! She landed safely and giggling!! 
May was an onlooker!! 
Just one more mommy!!! 
Really!!! One more!!