“Life isn’t about waiting for the storm to pass; it’s about learning to dance in the rain" ~ Anonymous
We are so grateful for the arrival of spring. When Daniel’s sores are healing, and the sun is shining, life is a little easier for all of us. The hand and foot sores that began in late February finally resolved, only to be replaced in April by another episode of mouth sores. The oral lesions finally healed and although Daniel is not yet 100%, he is clearly feeling better, and has been able to get out more often of late. Despite the new episodes of sores, we are continuing the two new medications until at least the end of August, with the hope that the episodes will become milder and less frequent.
Daniel was still eating well until the mouth sores began. Eating stopped almost completely during the episode of mouth sores, and has just resumed in the past week. It is notable that Dan is consuming enough calories from eating that he experienced weight loss with the mouth sores, and we had to adjust his G-tube feedings to compensate. He has been an enthusiastic eater for the past couple of days, and continues to work on drinking from a cup and self-feeding. We know it will take some time for Dan to relearn these basic skills, but he continues to move in the right direction.
In the past few months, Daniel has enjoyed several beautiful afternoons at the Ludlow reservoir. He has also attended a number of movies at Cinemark—Coraline; Monsters vs. Aliens; I Love You, Man; Seventeen Again; Night at the Museum 2; and Ghosts of Girlfriends Past. A couple of the movies were 3-D; Daniel wore the glasses and really enjoyed the special effects. He wears his regular glasses daily now, and he has quarterly visits with his optometrist. Our immediate goal is to improve Daniel’s ability to participate in the vision exam.
Since early March, Daniel has also made a couple of visits to the Eric Carle Museum, the bike path, the hairdresser, and the mall. We have just recently resumed visits to local gyms--Northampton Athletic Club, Hampshire Athletic Club, and the Fit Together Wellness Center--and the eventual choice of a gym to join will not be an easy decision. None of the facilities has exactly what Daniel needs, and the facility that comes closest is the most distant. We are also looking into a new YMCA facility in Wilbraham that offers a warm pool with access for individuals with physical disabilities.
This past weekend, Daniel attended a barbeque to celebrate his friend Vera’s graduation. He was accompanied by his close friend and PCA, Christina. He really enjoyed the event, seeing Vera, and meeting new people. Yesterday, Daniel met one of our Country Lane neighbors, Cyd, and her beautiful horse, Chica. It was a special encounter, although Daniel was rather tentative about the horse. We had just recently begun to consider therapeutic riding, so it was interesting to witness Daniel’s initial reaction to Chica.
March 29 marked the two-year anniversary of Daniel’s return home, after 28 months in three different hospitals following his cardiac arrest. As we begin our third year at home (and Dan’s fifth year post-injury), we are both grateful for his progress and improved quality of life, and dismayed by the challenges we continue to face as we try to help Daniel regain his independence. Insurance, supply, staffing, medical, and accessibility issues continue to require our ongoing attention. It has gotten easier with time, but nothing is yet “easy.” But we are always mindful of how far Daniel has come, and how grateful we are for the love and support of friends.
