At one month, Willow was stable and able to come home and was doing great. Her two month check-up showed little to no issues with her heart and lungs. It was a great Christmas. In January, Willow returned to Johns Hopkins for a brain scan. Unfortunately, the Specialists were concerned and the Neurosurgeons immediately did a multi-hour surgery resulting in coils lining the blood vessels in her brain to help control the flow. She now has a total of 81 coils in her little head. The 24 hours following surgery is the test for survival, Willow not only survived she was able to breathe on her own. Everyone was very ecstatic at her progress. Shortly after that, the seizures began. They were able to get them under control within a couple days. For the last 2 months, Willow has been recovering in the PICU and recently moved to a rehabilitation facility. Once again, Willow has been doing exceptionally well. She is able to track with her eyes, she recognizes people and she even tries to sing (Jesus Loves Me is a favorite). The long term prognosis is a wait-and-see approach. The human body is capable of miracles, couple that with her brain and age, and her family is very optimistic. Even the doctors are not wanting to give a long prognosis at this time as the brain is capable of fixing itself in amazing ways.
Pamela and Adam have been beyond blessed. The personnel at Johns Hopkins and the Kennedy Krieger Institute have been incredible. Friends and family have been unwavering in their commitment to this family. Offering meals, financial donations, childcare for their other 3 children, thoughts and most appreciated, prayers. They’ve been able to stay in a hotel room at Believe In Tomorrow Children’s House for much less than they found find for a local hotel room.
The demands are wearing thin. Three of Willow’s five months have been spent in a hospital an hour and a half from the family home. Pamela and Adam have both exhausted their leave benefits. All this while still trying to remain active in the lives of their three children being cared for by family. Many have asked what can they do to help and if they is a way to donate financially. We have established this gofundme account. These monies will be used for the care and support for Willow, including items such as transportation costs, lodging, food, and Willow’s current and future medical bills.
This family has learned to fully embrace the time that you have together with your loved ones. They are grateful to have you in their lives!!
- K Allen
- Tracy Flinchbaugh
- DANIELLE SEIPLE
- Molly Jackman
- Betsey Gilbert
Organizer and beneficiary
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