We have been home from the hospital for three weeks and it has been busy!! Sorry for the lack of updates. We appreciate everyone that has been checking in on us! Thank you!
"How are we doing?" The most common question. We are surviving! We are trying to find our new normal as we adjust to having five children and caring for all of Maelee's medical needs. It will take time. For now, we live in chaos most times with messes at our feet and laundry over flowing. Just like every other family! We have made time for some family traditions; cutting down the Christmas tree and playing outside in the first snow.
Overall, Maelee is doing well. After one week at home, her picc line was removed. Yay!! Happy to get rid of that infection risk and have one less tube. She is growing in her appetite and food repertoire---although it is still fairly limited. She tolerates her tube feedings, cathing, and medications well. Please pray that she would start drinking. In the last week she has started to take sips. As in one sip per day. Yep, per day. We are working on it.
Deanna is so thankful for her nursing degree. God has her using it in a way she never imagined. After Claire was born, she has been home with the kids. It has been super helpful to have a medical background as we navigate medical issues. Throughout the past couple years, she has always thought about how God would use her nursing degree. There has been a desire to use nursing on the mission field. Well, God has placed this mission field in our home as we minister to, care for and love our children with special needs. It is not always easy, but God is faithful through it all.
Since leaving the hospital, we have gone to at least seven doctor appointments. Sorry, I have lost count. We have several more through the first week of January. After that, we have a small break. We are working to get her therapies scheduled. She has received a loaner wheelchair, although she does not like to sit in it all. Another work in progress! She is terrified of it. We are hoping she will warm up to the idea and will see the value of independence. That does not mean she sits still. She is quite an active girl! She army crawls and butt scoots her way all around the house. She loves to go exploring in the boys' and girls' bedrooms. She also loves to rip paper. There is always an abundance of paper all over the floor. It is a big mess most days! I guess we will allow her work her fine motor skills. The kids have been warned to keep their homework out of reach. I don't think the teachers will buy, "Maelee got to my homework."
Please pray for wisdom for the team of doctors that care for her. Right now there are a lot of cooks in the kitchen. Please pray for wisdom for us as we prayerfully advocate for Maelee to receive the best care. There was a big meeting this week to discuss her care with many of her physicians. There is one doctor that is not being a team player. We do not have a good relationship with this doctor. We are prayerfully considering taking her off of Maelee's case. Please pray that this decision would be very clear to us.
Please pray for overall health for our family. We currently have five people being treated for strep. Several have flu symptoms on top the strep, too. Deanna is the only that has not caught something...yet. Pray for good health. Pray that Maelee will remain free from the flu. She is considered to be very high risk if she gets the flu. Pray that we would recognize symptoms right away so that treatment is received within 36 hours. We praise God for an awesome pediatrician! We love her and she is a gift to our family!
Thank you for your continued love, prayers and support!
Maelee getting her IV medications.
Maelee is a big helper with her tube feedings.
She likes to help push her medications into the tube, too.
Happy Thanksgiving!
Deanna successfully made a trip to Wal-Mart with all five kids!
Nathan's hockey season is in full swing.
He is a busy guy playing for the house league and the All-Star travel team.
First pony tail for little miss.
Praying for no tears someday soon.
