- Tarah OSullivan
Growth, baby steps, and hope
Drake is doing really well right now. He is still loving his new physical therapist, and the improvements we are seeing in his physical and mental awareness are so wonderful. He is starting to use his body in ways that we have not seen before and growing stronger every day. Also, the more physical movement he gains, the more it turns his brain on, and we see a lot more mental awareness from him. We all find ourselves smiling a lot when we watch him process things, or turn his head to see people walk by. We had him in service with us at church this past Sunday, like normal, and he kept fighting us to keep his head facing the stage so he could see all the lights and movement. Eric and I just smiled and whispered a prayer of thanksgiving…..there is such an unspoken sense of hope around here like never before.
We went to meet some amazing youth this past Friday. We have been discussing some fundraising options with local groups for the year ahead, and it has truly been so humbling to watch God open up doors and go before us. We talked with the Dorman Boys Soccer Team Friday afternoon about Drake, our family, and our NKH disease. The littles came with us and were so excited to get to see some big soccer players, and mommy’s home high school. Rayph (our oldest son, he is three) even had to wear the tallest batman socks he could find to imitate the soccer boys. I was thankful we all got to go, and excited to be able to have this meeting. I have to admit… I was a bit nervous to talk of all the medical hardships Drake still faces and what he goes through daily with a younger crowd. Sometimes our story can feel a bit heavy, and we never want to leave people feeling burden, as God always offers us hope. We were very thankful to see the love in the team’s eyes and their willingness to listen, and even ask questions. We want more than anything for Drake’s story to be a story of hope, and draw people closer to our heavenly Father. Stay tuned for some exciting partnership with them in the near future and how you all can help with an up coming fundraiser!
As far as here at home, things are really good. Drake has started the B12 injections and today is his final dose on the transition. We have some medical evidence, and a theory we are working on, that the B12 could be a big factor to why his brain still seizes even when his glycine is in range. We go for a EEG Wednesday to see if there is improvement on his brain wave patterns and any information it may give us. I am very hopeful, as we have seen some leaps and bounds with his physical and mental gains, but we also realize it is still very early. Please pray for patients…. when God gives us a new direction with Drake’s treatment I like to run head first down that path. We have learned to walk a little slower, just to make sure we do not do anything that causes unwanted side effects from going to quickly, and making sure we give his body time to adjust. Please pray for continued improvement…. the more he improves the more we talk of head control and walkers. Also listening to his therapist talk of how “normal” his movements are, and how much new possibilities are in his future is unreal. All we can say is God is a good, good father.
Thank you for your prayers and for the constant encouragement we receive almost daily. Thank you for always being willing to help. We are really praying hard for a direction on our research fund and the possibilities it could open. We currently are finalizing the partnership with the gene therapy researcher in the UK and hope to be able to start transferring funds this month. We also are prayerfully seeking a researcher in the states to further new possibilities. Please pray God will align the correct research facility in His perfect timing.
We love you all,
Eric, Tarah, littles, and Drake
“Every good and perfect gift is from above, coming down from the Father of the heavenly lights, who does not change.… ”