I have an update, some blessings to report and some prayers to ask for!
Our update: Alex is happy to be home. He is playiong and feeling pretty good. We haven't had any complaints of stomach pain. He continues to put out large amounts of bile each day, but as long as he is not hurting I am okay with replacing fluids. Since being on TPN for the last few months, Alex has gained almost 3 pounds and grown an inch. We are so happy to see him finally growing. We are trying to get as much weight on him now because we know he will struggle when we go back to feeds. We run labs on Monday and will see how his pancreas and blood counts look, but for now all seems well.
Blessings: First and foremost...Grandpa is coming tomorrow! We are so excited. Grandpa was supposed to spend Thanksgiving with us but because we were in the hospital leading up to the holiday he decided to wait for Christmas. I need to thank my Sister, jenn for loving us enough to always be flexible with holidays. Dad always spends Thanksgiving with one of us and Christmas with one of us. Well for the second year Jenn and her family have graciously changed plans to accomadate Alex's schedule. Jenn we love you and appreciate that you always do what you can to make things easier on us.
The next blessing I can't even believe! Our church contacted us and said they wanted to help us out between Bruce's job situation last month and Alex. They let me know that they had something for me to pick up. Well, I went to church yesterday and they had several frozen meals, $225 in grocery store gift cards, $150 in Target/Walmart gift cards, and a free meal at a local restaurant. I am so touched and blown away by people's generosity. It really does mean a lot.
Prayers: We have several friends who are in need of prayers right now.
1. Lauren is a little girl who is getting ready to be admitted to the hospital (in Philly) awatiing a heart transplant. She is a precious little miracle and while her parents knew there was the possibility she would one day need a heart they were hoping it wouldn't be this soon!
2. Landon: Landon, Jen and the whole family are getting ready to leave to go "home" to Missouri to spend Christmas with their extended family. Please pray for Landon's health to hold out so that they can enjoy this much needed time at home.
3. Smauel is our new buddy at the hospital. We have "talked" online for a few months, but they spent 3 weeks inpatient with us in Novemebr and were back with us again this week. Samuel is very sick with 2 kinds of central line infections and the stomach bug that Alex had in November. They are going into surgery later today to remove his port. He will need more surgery next week to replace his port with a new one. Missy- I pray you guys are home for Christmas!
4. Tricia and Andrew: Please pray for there muscle biopsy results to come back. They have been patiently waiting for 12 weeks.
5.My close friend Mariah and her family as her Dad was just diagnosed with inoperable lung cancer.
6. Countless other families I can't name who are struggling with mito.