Dear Team Ryder,
We know it has been too long since our last up date and promise to be better about updating everyone. We thank you for your patience. Throughout this update, we hope to acknowledge the support that has come to us in so many ways. We will also try to answer the caring questions that we have had from so many of you who want to understand.
We know your questions and wonders are associated with your care and concern for Ryder and his family. Please know this is the difficult part of any update. Our life with Ryder is very different from what we planned and imagined, but know without a doubt that we are all full of hope for his future. He could not be more loved and cherished. After receiving Ryder via transfer, it took the incredible JDMCH team several days to get the seizures under control with medication. We were and are in awe of their dedication to Ryder. Ryder was heavily sedated and did not start life with his family as it should have been; held and cuddled, fed, changed and bathed by Dani, Scott and Ava until several weeks into the hospital stay when it was safe enough for "family touch time" after his ventilation tube was removed and condition stabilized. Ryder received all nourishment via feeding tubes for several weeks and only then introduced to bottle feeding (mom's milk) and then finally Danielle was able to nurse her sweet boy. Then came the fateful day when the team comprised of neonatologists, neurologists and the lead radiologist shared the traumatic story the MRIs and other diagnostics told. At some point (we do not know when or why as of yet, and are leaving the speculation and fact finding to the specialized team of providers), Ryder suffered a major loss of oxygen to his brain. We do know that Dani had a very happy and healthy pregnancy. Such a severe loss of oxygen is caused by a traumatic brain injury also called a TBI. It is very extensive and means that he will need help with the smallest of needs for a long time to come. We are so hoping that he will surprise all of us and gradually, with lots of help and love be able to learn some of the skills that we all take for granted. Right now, although his behavior is delayed, he is becoming somewhat aware of his surroundings including lights and sounds. He most enjoys his mother's soothing touch and the comforting feeling of being held. When home from work and school, daddy Scott and awesome big sister Ava do their part Ryder also has laryngomalacia which is a softening of the tissues of the larynx (voice box) above the vocal cords and causes noisy breathing. He must be watched carefully for breathing and swallowing issues. This explains why Ryder is connected to a portable apnea (breathing) and cardiac monitor. This condition should heal on its own in time. We hope this helps everyone to better understand Ryder, Dani, Scott and Ava's new reality and the many ways you can help if you choose.
Dani was to return to work tomorrow, October 6th. Ryder would be in trustworthy hands while away from his family. Sadly, this is no longer an option. Ryder has very special needs that cannot be provided in any traditional day care settings. He requires one to one attention. Dani, Scott and Ava are so very attentive to his needs. Your financial support has been and is so meaningful at this time. We again, thank family, friends and strangers who have contributed on the GoFundMe site or in other ways.
For those of you who have asked or wonder about support programs. Ryder should qualify for disability income, but the application process is slow and the income is minimal. Yes, there are government insurance programs for this situation as well. However, they do not cover all medications and not all providers work with these programs. For now Dani and Scott are working to keep Ryder and Ava on a family plan if not cost prohibitive. Ryder is on costly anti-seizure medicine, supplements and other meds for his varied issues. Several are not covered by government supported insurance. Ryder was immediately assigned a social worker at Joe DiMaggio Children's Hospital (JDMCH) who started the process for support immediately.
Mommy and daddy are so very busy parenting Ryder and Sweet Ava. Of course, Scott still manages to dedicate time to home maintenance! We are so grateful to friends and family who have provided a meal or two. We MUST mention family friend, Susan Nero who has been catering several meals weekly. Not just dinner, but awesome deserts with a side of diapers :-) Thank you so much.
Ryder is currently under the care of eight specialists; neurologists, ophthalmology, gastroenterology, cardiology, EENT (eye, ears, nose, and throat), genetics, endocrinology, and of course a pediatrician who is an intricate part of his team. For now, there are at least two medical visits a week. Last week, a visit transitioned into a non-emergency hospital stay for testing. Unfortunately this is not at all unusual for special needs babies and children. We are anticipating the evaluations for speech, physical and other therapies as the formal start of early intervention at Palm Bach County Easter Seals, Early Steps Program. This leads us to thank family and friends who are able to help with Ava while mom and dad are at the hospital with Ryder or Scott is working. We should thank Uncle Alex, Grandma Jen and Pop Pop Peter, and Uncle Jamie and Aunt Cristy for providing fun times on weekends. For now, Dani cannot transport Ryder alone so help getting to medical appointments is needed and provided. Since Ryder does need special attention and tasks we take for granted such as feeding, soothing, giving medications, and at home therapies take longer than you can imagine, making help with daily household chores and errands such a help. This not only allows Dani the intimate time she needs with Ryder, but provides "mommy and me time with Ava", including homework, and quality time for Dani and Scott as well.
Short and happy social visits are welcome when the days and times are free of appointments and support tasks for Ryder and home chores are not underway. Outings are an option now that the weather is getting better. Although, for all of this care must be taken to ensure Ryder and family are not exposed needlessly to colds, flu or other illnesses. Please get your flu shots early! Doctor's orders!
As you can imagine, Ryder's grandparents and aunts and uncles are so very, very attentive. We appreciate all they do.
Prayers and positive thoughts are always welcome.
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