Monday, April 13, 2009

Mary-Kaylin has had a great week. It began last Sunday with her meeting some of Memu's Little Rock friends who have been praying for her. At the Hedges we dyed Easter eggs, ate great food, hugged Ms. Lori and Ms. Patti who visited during the hospital stay and had a good time listening to Ms. Patti's plans for Mary-Kaylin's wedding! The wedding plans started when Memu suggested that MK could ride a horse at her wedding. Thankfully Ms. Patti stepped in and suggested a horse-drawn carriage instead. They had it planned in a matter of minutes!

Easter Sunday was an important day for Mary-Kaylin. She walked down front at church and let everyone know she is a Christian. She's been asking a lot of questions lately and we went to pray with Pastor Gary on Thursday. It was her first Sunday back in church and we will never forget it!

Please continue to pray for her. She is still having headaches that seem to come and go throughout the day. We should know better how the tumor is "behaving" after 2-3 MRI's. We pray it doesn't grow at all or goes away!


Mary-Kaylin with Ms. Patti

Back to School!!

Thursday, April 2, 2009

Clinic Visit

Mary-Kaylin feels great today! It's the first day she's felt this good since her surgery. She's not had headaches when sitting up or walking and has spent her day playing! e-Stem Elementary, get ready! MK will be back on Monday in time for Benchmark testing! Mary-Kaylin's visit to Children's Neuroscience Clinic went well today. TaTa, Daddy and I were there. Mary-Kaylin had several questions about her incisions, the "bump" on her head from the shunt and the discomfort the tube was causing as it crossed her chest (it lays just under her skin). Kelly, the NP, answered them all to MK's satisfaction. Because we had been to see Professor, the doctor had no new information to add. The shunt seems to be working well. Her brain has been so compressed against the inside of her skull for so long that the inside of the skull has impressions from her brain. As the hydrocephalus is relieved and she adjusts to the new pressure levels, Kelly said MK may not feel well for awhile. Kelly said, "She may have been set up for chronic headaches but we'll not know that for 6 months." Following the next 2-3 MRI's we will know more about the tumor's behavior and be able to make a plan of action for addressing it directly. Of course we want it to be gone! Her next MRI will be June 19. Our next step is to find her a neuro ophthalmologist due to the location of the tumor next to the visual relay. We have the names of two we are deciding between. Our support from friends, family, church and school is amazing! Thank you for everything! This little girl feels so loved and supported and so do we. Michele


As we head to Mary-Kaylin's first check up following her surgery, I've been thinking about all of the love, support and prayers that have gotten us through these first couple of weeks. When we first learned it was a brain tumor, I'll never forget walking into the ER waiting room at Children's where my aunt was sitting with Mary-Kaylin and seeing the look on Memu's face when I mouthed "brain tumor" to her where MK couldn't hear or see what we were doing. I walked back to the room where doctors were deciding next steps. By the time I walked back into the ER waiting room to tell her what going to happen next, my parents, Martha and Elton Ballentine, brother-in-law, Jeff Johnson, cousins Mallory Hardin and Scooter and Avie Hardin, Unlce Lu Hardin, and Perry Jon's good friend and our minister of music at Immanuel, Eric Jones, were there. My sister, Angela, was on her way to take kids to Nashville for some fun and had decided to turn around and come home. That was the moment I knew that whatever we were about to face, we would not be alone. That evening Patti Cannady, Anne Pressly's mother and a good friend of the Hardins, came to see us. She was an amazing encourager and true inspiration. She looked me in the eye and told me several things that Beth Moore had said to her. She told me to pray Psalm 91. The next evening she visited when Mary-Kaylin was in a tremendous amount of pain after her surgery. It was just Patti and myself in MK's ICU room. Mary-Kaylin was in so much pain she could barely catch her breath and was crying. I felt so helpless and was in tears as her nurse scrambled to order more pain meds and a PCA. Ms. Patti came in and started describing the precious pajamas and hat she had bought for her. Her voice was so soothing and calm. Then Patti started talking in Mary-Kaylin's ear about the angels in her room and Jesus. She was speaking sweet scriptures to her. Within minutes Mary-Kaylin was breathing easy and resting. As I watched and listened to Patti and witnessed her faith and strength, not only did I know we were not going to be alone in this journey, I knew that God's provision for comfort, strength and hope was real in the midst of the most trying and scariest of times. I've known this for a long time, but on this day God knew I needed to experience it. Knowing what Patti had been through and experiencing her strength and faith as she encouraged us and comforted Mary-Kaylin was something I'll never forget. Michele