Really not that surprised:(

One of the things I have learned having a chronically ill child is the effects of the FDA and medicine has on our family. There has been several shortages in some of the elements in TPN the last few months (calcium, potassium, copper and zinc). The shortage that we have been most effected by is ethanol lockes. This is what has kept Lukie "healthy" and less hospital stays the last 2 years. Ethanol helps prevent life threatening blood infections that he is prone to. Well last Thursday I really wasn't too surprised when he suddenly came down with a fever of 105. Mike and I took him to the ER at Utah Valley Hospital. After cultures came back positive we found out he can stinky old E. Coli. The doctors and staff were amazing this stay. They were very upset that Lukie got sick because he no longer has ethanol lockes. They went above and beyond to track down the very last vials of ethanol in the state to give to Luke. We love Utah Valley because the doctors and nurses genuinely care about Lukie, not like a number.

Luke did great this visit. He is so brave:) When we were being admitted to his room he told the ER nurse "I'm just going to have a sleep over with my friends, they live upstairs". He knows his favorite nurses by name, and they spoil him! We got to bring Luke home on Father's Day!! Happy Father's Day Mike!

Lukie now know how to operate his bed:)

He loves to go to the playroom.

Saying bye-bye to his brothers.

Best buddies!

Lukie in his Curious George Scrubs:)

Mike happy to be home with his boys for Father's Day!

Summer festivals

This month we celebrated Art City Days in Springville and Summer Fest in Orem.

We started the day bright and early by going to the hot air balloons in Springville with my dad. After he made us his yummy big pancakes (crepes). After breakfast both of our families walked in the Art City Days parade with us and Habitat for Humanity (I will do a later post on why we are walking in Parades with habitat for humanity). Then we had a BBQ at Mike's parent's house and the kids had fun playing in the water.

In the evening Mike's family walked with us in the Orem Summer Fest parade. Two parades in one day:) The boys love being in the parades and throwing candy. After the evening parade we had dessert at our house and played outside until it got dark. We have a great view of the fireworks for our house. It was a very long but fun filled day. Great way to kick off summer time!

School's out for Summer!

June 3rd was the kids last day of school. The boys each invited a couple of friends over to celebrate the first day of summer. We had pizza, popsicles , and lots of water fun. Everyone had fun ever little Luke!

Short Gut family picnic

In May we were invited to a Short Gut family picnic along with the other short gut toddlers in Utah.  Lukie isn't really "short gut" but they adopted us in the group because it is the only group we really fit in with.  Short gut kids have the same life style as Luke, they are TPN dependent, have G tubes, and some also have ostomy bags.  There were only 2 other kids there, and the dietican from Primary Children's that makes the recipe for our TPN.  It was fun to talk with other parents with lives like ours, and for Lukie to see other kids like him with tubes and back packs.  We look forward to meeting together again in the future.

Lukie and David (They have the same home care nurse)

Lukie painting

Boys painting magnets

Cute little boys all little fighters!

Patrick (waiting for a small bowel transplant), Lukie, and David.

Hope of America

Last month Jayden and the rest of the 5th grades in the district performed Hope of America.  They worked hard all year learning the songs and actions.  It was a wonderful memorable evening.  Way to go Jayden!

Look Closely Jayden is on the very edge in Yellow.

Jayden's School Suncrest Elementary