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, May 20, 2017

Happy Mother's Day

I was really looking forward to Mother's Day, and my family did NOT dissapoint. Daddy made eggs and sausage, which I opted to eat with everyone in the kitchen. I miss them when I am all alone in my room. They did the clean up. Jeff didn't have church meetings, so there was a ton of help getting everyone ready and out the door for church. 
-side story-
We just got to church and everyone was filing in. Ashy was the last little person to be trudging through the parking lot. In his hands were his grahams and a package of fruit snacks. He is busy trying to open those darn fruit snacks and has stopped right in the road. There is a very nice older man who is waiting  super patient for us to get outa the way.  He is asking for me to "open it" but I need him to wait until later on in the service because I want him to practice patients and I also know he will be better later if he has incentive to behave. I tell him to wait. He wants them open "night now" and I tell him NO.. Car guy still waiting... Daddy has come back and is calling to him to come along.... NO!!! Car guy still waiting... I rush over and take the fruit snacks out of his hand (rude I know, he wasn't handing them over without a fight) to which he promptly falls to the ground.. Lays back and kicks his feet. The kind of fit reserved for candy bars being taken away.  Car guy still waiting... With my own arms full of nursery Mother's Day craft supplies and busy bag, and purse there is no grabbing my little son. Lucky for us, daddy came to the rescue, scooped up the devastated not even two year old, and carries him in. Finally, car guy can go... He smiled, probably been in this nearly exact situation.  He did eventually get his snacks, but was ticked that I opened them the wrong way and threw most of them. Some days.... Sheesh..

The kids made me beautiful gifts and cards, I especially liked May's card because she explained that my favorite food is toast, and that I think MayLee is the best at going to bed. So totally... 

We get everyone to look at the camera and yell PIZZA!!!

May 13th

I am not very knowledgable about scouting. It's kind of a guy thing that I didn't pay much attention to during my youth. Plus, I was busy with what was then called Merry Miss, now, Activity Days, or young women's. Anyway.... Alex really enjoys scouting and so I bought Scout-o-Rama tickets and took the kids. We actually had a pretty great time.

Daddy was off doing a training ride. He went up the north side of Suncrest an 1,178 foot elevation change in 3.5 miles...and we followed him down the other side.  I just think of this and get saddle sore.

Just because she kept asking.. I chopped off Ry's hair... It's so cute!!!

Hurray for May

Just like tying shoes, or potty training, learning to ride a two wheeler is a big accomplishment. This little 4 year old, MayLee girl picked it right up. Daddy held on a bit and she was off. The hard part about learning to ride a bike is, the start. With a little more work, she won't even need me out there pushing her off. 

She kept saying,"I got it daddy, let go daddy!!!"

Daddy is happy to have another little addict.

May 12th

Miss Elizabeth, has been such a dear friend to Gator... She spoils him as if she is another aunti. They hung out the other day... Went to Chick-fil-a,  played at the park, got a little sunshine and rocked these selfies. Thanks for the fun day, and fun memories.

Wednesday, May 17, 2017

May 5th

Grandpa's funeral was beautiful... I loved learning things about him that were simply amazing. Like the fact that they called living in a cabin in the woods with a tub on a nail on the side and the potty down the path, the "good ol days", That his service in the Navy was tricky, he served honorably. That he didn't become a member of The Church of Jesus Christ of Latter Day Saints, until he was in his 40's, but that he loved the gospel because it brought him so much joy. He served there with his whole heart as well. He loved nothing more than to treat Grandma Great like the Queen that she is. He will be so missed. But I know, it is us that are left here, that will be impatient. He has already begun his work on the other side as an guardian angel and helper, he doesn't have distance in miles like we do, so he must be right near us always. He hears us when we talk to him and we can feel his calming presence. 

Just for good measure, we will eat some chocolate cake... Because cake fixes everything.

May 4th

Every time we see a bike on the road Asher yells out.. BIKE!!!!! Then HELMET. 

May 2nd

Ryleigh gave us all pass of all passes for Christmas this year. We went to set up everything, but we had to ride a few things too... 

April 29th

Jeff's grandpa wasn't doing too good. The cancer that had taken up residency had spread so much. Jeff really wanted a chance to visit. Little did we know that he would be by his side when he left this life. The kids were able to see him and say goodbye as well. It is pretty tricky to keep them occupied with matters that they don't understand for too long. So we visited cousins and went to lunch. They are always excited for the hotel because it means we get to swim in the pool. 

April 28th

My stolen phone, with picture evidence...

April 27th

 We are always so proud of our kids and their accomplishments. This one is especially neat. Alex was chosen by his teachers, as one of the students that best shows the character trait of optimism. I want my kids to always look on the bright side, to choose their attitude when it is the only thing they are in control of and to keep pushing past the trial, no matter the duration. I really think Alex is a great example of this for our family. Way to go Alex! 

This is our friend Ashley. Alex and Ashley are in the French classes opposit of each other. These two make a great team. We are so proud of Ashley too....

April 22nd

The first big ride of the season... We only had the three littles, because the two big kids were helping at the church fund raiser.

I stopped in for a car wash. Alex said "it's like a real car wash, except with soap in my arm pits" 

After that we finally headed to Lagoon for the first time using our pass. 

April 21st

It's Alex's Birthday!!

This boy is now a decade old and in the double digits. He says he had the best birthday ever, he got to even have his wax museum on his birthday, which made school all that much cooler. 

He chose Babe Ruth.

I took Chic-fail-a to school lunch. He even got a huge chocolate cake!!!

He was so excited for the Xbox and one of the games he played in Florida. It was an awesome birthday.