Hitting another pothole on the road of life

Though we have had things carefully planned out for spending Christmas in Pittsburgh, we had unexpected events this weekend. Caroline and I came home Friday night so she could do her last two performances with Pennsylvania Youth Theater and I could work Saturday. She performed Saturday at the first show, then watched the second show before her cast party. At 730pm I received a call from an EMT that Carline was being brought to the hospital because she had a seizure. If it was going to happen, it happened the best time possible. I was working at the hospital, not 6 hrs away in Pittsburgh. In the ER there was talk of transferring her to Philadelphia. That is when I had a bit of panic. We couldn't have on child in Pittsburgh and one child in Philadelphia for Christmas. Thankfully a very understnnding ER Attending and Resident were on  that night. I explained the situation and they allowed her to.go home at about midnight so I could drive her out Sunday AM to he seen here in Pittsburgh.

Carline saw a doctor today, had some testing and will have more testing and appointments through the week. This was totally unexpected but we are thankful for all those who are helping make this situation  easier.

Today my mom, the girls and I ran to Target to get some food  for breakfasts and lunches. While there a little boy came and gave Makayla and envelope. In it was 10.00 as an act of kindness. There was a note encouraging us to "pass it o.." makayla opened the envelope and was very excited about the 10.00 enclosed. Moments later we saw Peppa Pig shirts on the clearance rack. We know if a little girl who has been here in the hospital, states away from home, and who lives Peppa Pig. Her grandmother was trying to find Peppa Pig things for Christmas. I asked Makyala and Kyara if they thought we should use that money for the shirts for a Christmas gift for that girl in the hospital. I will be honest I wasn't sure how the girls (4 and 6) would respond. The toy aisle was a short way away. But they both right away said yes. Caroline and I tried to not act too surprised but NY heart felt so good to see then say yes without hesitation. I think maybe because that young boy gave this to Makayla it mag have made her understood kindness in a different way.

Luke has been doing pretty well.. of course nothing has gone in his belly or mouth for a week now. Tonight he wanted to stop draining his belly so we did that. His belly is big now and more firm. Not a great sign but we will see what happens. If he starts having pain we will drain it again. Tomorrow the plan is to begin feeds at a teaspoon an hour dripping into his intestine (just pedialyte).

I want to thank the 10 people who made meals this month for our family back home. It was a huge help. I want to thank all of those who sent care packages and cards to Luke. I want to thank all the nurses nd PCTs here who care for Luke when I am gone.. especially because he likes to "blow up" the call bell while I am gone. The button gets worn out during those 48 hours!There are so many who have made this all a little easier. All of those acts of kindness no matter how big or small they seem lift us up in support.

This past week the girls had an amazing opportunity to go to the Nutcracker here at the Pittsburgh Ballet. Makayla Sat wide eyed the entire time and loved it! Kyara danced in the aisle during the show. 

Luke has loved the special packages that have arrived.

Here at the hospital they have had Santa's Workshops for both the patients and the siblings to "shop" at for free . They can buy Christmas presents for their family and this was a huge hit for tall the kids. They are all so excited about what they picked out!!

Dog visits are always a highlight.

More goodies

Bat man walking the hallways. He must do 9 laps a dag. He is now wearing a mask outside of his room to protect him from getting the flu. It is really bad out here.

He has been able to have private play parties in the playroom each day. That has meant a lot to him and been a real spirit booster. Since he is on isolation he can't go in the playrooms. At the end of the Day his Child Life therapist has been taking him in and closing the playroom for a special play session. Then it gets cleaned so  to make sure everyone stays safe and it is clean for the next days activities. Luke has an antiantibiotic resistant bacteria in his GI tract. It was found in his blood and is very common in kids like Luke who are on IV antibiotics a lot as well as transplant kids.

This week I think of my Godson, Corey. He was our first significant connection to Pittsburgh Childrens and transplants. I cared for him in the NICU then at home in home care nursing. He needed a liver bowel transplant and received it almost 14 years ago. He sadly passed away  10 months later.. just a couple of days before we brought Luke home from the NICU and 10 months after transplant. Glen and I came out and visited Corey and his mom a few times. He would have been 15 on December 19. I'll never forget him. Having been right there for Corey's transplant journey made us go in with eyes wide open to Luke's transplant. 

Today was Logan's 12th birthday. It is hard being here for the kids birthdays. Each child (except Luke) has either celebrated a birthday here in Pittsburgh or celebrated their birthday at home when I have been here or both. Being a special needs sibling is tough and there are a lot of days I am sure they feel like it is unfair. I am so proud of my kids for all they endure and grow to accept. They have seen things most adults haven't seen. They know about things that most kids don't. They ponder life in a way most others their age don't have to. And I know they will carry this experience with them in life. I hope it makes them more compassionate and empathetic and caring as they journey through life.

Happy birthday Logan!

 Logan at his Boy Scouts Court of Honor

Speedy Delivery!.Mr McFeely doesn't look any different than when I watched him at 5 years old on Mr. Rodgers Neighborhood.

Luke was on the telethon for the Children's Hospital Free Care fund. Always nervous on live TV... What is her going to say. He always cones through and does great!

More goodies

Recordingsongs with the music therapist and doing art with the art therapist. He is going to make an album (he already has 10 tracks) and he will design the cover with the art therapist. Love the Child Life services they have here.

Kyara recording her own song.

 Cheesehead! From a Wisconsin friend!

And these goodies.. the tarantula started it all.. now we have a rat and a snake. Luke has had too much fun with these!

Schoolwork

Museum of Natural History bedside program. Love how much the community volunteers here at Children's.

Kyara's plants from her elective Dirt class.

Makayla is adding lots of details to her pictures now. She is 4, so I think this picture of her and Kyara (6) is a future picture!?!??!

Glen and the boys are headed out on Wednesday. We will be together Thursday then I head back for 48 hrs to work. 

Please pray for safe travels for all. Pray for Carline that she is not so nervous about all that has gone on and that she doesn't have another seizure. Please pray feedings go well this week for Luke. Pray for us as a family during this time. Pray for my patience.. I struggle with trying to keep things under control and planned out all the time. So much with Luke has been out of our control, I think I try to overcompensate by makeing sure other things are under control. Saturday was a good reminder it is not for me to control. 

Again, written on my phone at a crazy hour. Please excuse misspellings, typos, and poor flow to this post.