February 2014
Since the fundraiser last year, Jonathan had a very a tough early spring in 2013. Jonathan was hospitalized with pneumonia for three days. This was his first and longest hospitalization yet, but we know it will unfortunately not be his last. Since then, we have worked alongside a pulmonologist in finding ways to prevent pneumonia and other respiratory infections from occurring. With Jonathan’s MECP2 Duplication he is very prone to respiratory infections and pneumonia. With these preventative techniques that we have been taught, Jonathan has been fairly healthy since his pneumonia episode last spring.
In September of 2013, Jonathan had a 48 hour EEG which tested for seizure activity. This is also a symptom of the disorder. Luckily, Jonathan’s EEG did not show any signs of seizures, but he did show activity that shows he is at risk for seizures. We pray that the seizures will never affect Jonathan like they have affected many other children with this disorder.
Jonathan has been very motivated in becoming more mobile. Although he is still not walking at 2 ½ years old, he has just begun crawling, stands with assistance or against couches or tables, kneels, and finds ways to end up all over the room without walking. He is still not very verbal for his age, as this is part of his disorder, but he continues to say “mama” and “dada” and babble other things that sound very close to new words. He is beginning to take more part in feeding himself by fork, spoon, and by hand. He is also helping to dress himself. With this, he has become more independent and thrives off of knowing he can do something for himself.
Over the last year, he has continued to have four therapy sessions each week through Early Intervention. He receives one session of speech, one session of occupational therapy, and two sessions of physical therapy each week. All of this has helped tremendously in where he is at today. Currently, we are preparing to find an appropriate preschool for Jonathan to attend next year once he turns 3. When he turns 3 he will no longer be able to receive the therapy from Early Intervention, and, therefore, must attend a preschool which can give him the therapy and other things that he needs.
In closing, Jonathan has had a very good year. He is always happy and loves to laugh and play. Even when he is sick he is always a cheerful little boy. We are so appreciative of what the fundraiser has done for our family. Because of the fundraiser, we can have a safety net for medical expenses that can pop up at any time. Also, since Jonathan will need equipment that will be very expensive in the future we are very happy that we will not be worried about being able to afford these things anymore. Thank you very much to the Shannon Daley Memorial Fund from the Rojas family!