Being a mom is the most rewarding thing for me in life.. don't get me wrong.. at times it is the most exhausting, challenging, frustrating, really hard thing as well. Ironically this Mother's Day I am working 12 hr nights Saturday and Sunday.. kind of a snapshot of how it is as a mom for me. Work competing with being a mom... I love what I do (being a Neonatal Nurse Practitioner) but I always feel it takes away from my kids and that is hard. 

Luke was the child who made me a mom.. the best decision Glen and I ever made (well after getting married)... I would not have been able to ever guess how blessed I would be as Luke's mom. Then as each child joined our family I have received so much more than I have given. I can't believe how fast the years have gone by. I can't believe how each child has brought some so special to my life as a mom. I am so thankful for all the children God brought into our family. 

 This past week has been full of all kinds of things.. but it just seems like an average week to us. My parents had R and R in Florida which was great for them.. it does add a new twist to daily routines at home. 

We are really enjoying the nice weather!

Luke and Kyara playing a game of Sorry.

Makayla LOVING the weather and water play!

Saturday I was able to paint the whole kitchen (ceiling and walls) which I have been wanting to do for 2 years! I have a few more rooms that really need to be painted.. hopefully I will get them done soon too. I decided to paint instead of unpack the rest of our stuff from Pittsburgh... so it continues to sit.

Saturday the boys had a great game of soccer in the backyard. Luke was so happy to be playing "regular" kids stuff with his "bros." I LOVE seeing him have those kind of days!

 Oh the days have been full of adventures.. I will do it in a timeline...

Thursday Luke got out of the hospital in the afternoon. I headed to Express Care with Gregory to see why he was having fevers. He has strep. He hadn't peed in 16 hours and there was concern he may have had blood in his urine. So off we went to the ER. He needed 2 Liters of IV fluids, but his blood work was ok and his kidneys were working well (super concentrating his urine). It is amazing how when you have a healthy body how well it can work! We finally got out of the ER by midnight and went back to the room. 

Friday AM instead of getting out early we ended up sleeping in due to the late night before. We finally were packed up by lunchtime. Matt Cooke (Penguins player) came to Ronald McDonald House to visit with his family. Kyara had to see "my friend Matt Cooke." He came with his children and wife and had Easter Eggs for the kids. 

His TPN arrived in the mail and we are just about to head over to RMH. Luke has been singing all morning and is happy, happy, happy!

Gregory still has a fever... I am going to take him to the express care here at the hospital when it opens at 5pm. Praying it is nothing contagious that Luke can get. We don't need to end up back here again!

We were told today we could get discharged tomorrow. This is very exciting as we will make it home for Easter. Luke was so happy when he heard he started screaming and whooping and hollering and raising up his arms. I'm sure the whole floor heard him!

Today was haircut day! Matt brought his clippers and Luke got a fresh haircut... it is amazing how fast this boy's hair grows!!

 Right now the goal is to have Luke out of the hospital on Friday. There are still some changes that are being made to his TPN and yesterday wasn't such a good day. Today was a good day though.

The eye doctors came in to check Luke's eyes because he has been having thumping headaches. They wanted to make sure he did not have increased pressure in his brain (due to a side effect of one of his medicines). Thankfully there was no sign of that in his eye exam (where often evidence of that is seen). 

The other kids went to the Sibling Center late morning then came up after lunch. Off to drum circle we all went.

Kyara and Carline with Nicole, the music therapist.

here in the hospital dogs come to visit your room you can teach them tricks and you can pet them  and there is a playroom you can make arts and crafts and there is tickets to go to the pitsburg penguins hockey games and you can also go to the pitsburg pirates games as well and the most popular game in pitsburg is the steelers it is football and a library on the 6th floor you can pick out books and borrow movies and there are special activities like thay have a drum circle you can go there and drum and thay have Austins play room on the 6th floor as well well thats it this blog has been written by a boy named luke.

 Sorry it has been a bit since my updates. As a mom of a chronically ill child you often can deal with a lot of stress over hospitalizations, not knowing what the next few days will bring, being separated from family, not knowing when you are getting home, the doctors not knowing what is really going on with your child's body, etc. But then for me there comes a time where all of a sudden you hit a wall. Of of a sudden I feel like I am done. I get overwhelmed and I feel like everything is crashing in on me. That is how I felt Friday. It was when all the Mega Millions hype was going on. I had to get out of the room and go for a walk so I went to the gift shop and bought a Mega Millions ticket... I logically know the odds are almost nil that we would ever win, but what are the odds your child has an extremely rare lung disease and then gets a lung transplant and then the new lungs have something no one in the country (?world) has ever seen before...

Well at least we are more seriously talking about discharge- potentially Monday. But we have to make sure we have the right TPN mix and the right amount of IV fluids. He continues to be monitored closely for his electrolytes and fluid status.

Last night Luke decided he would rather have the couch than the bed. Eventually he moved back over.

Kathi is the child life assistant on this floor. She has been a lifesaver for all of these admissions. She always has great stuff for Luke to do both in his room and in the playroom. Today Luke was painting wooden easter eggs and is making an easter basket with these eggs and a "chocolate" wooden bunny he painted brown.