Hello I am Elysia, I was a single mother yet today I'm taken by Kyle. We raise a fun filled kiddo named Steven. We met at fourteen weeks pregnant at the Twelve Oaks Mall for grub with a movie after at emagine. It's sorta a "Look Who's Talking " ordeal, great movie by the way. Again the biological father didn't exactly work out for Steven's best interests.
Child protective services found it was in Steven's best interest for us to stay away and cancel parenting time due to sibling cruelty acts to the half brother newborn that his father has with another woman after I left my ex originally. I got out of the situation and was smart. I moved back home with my parents while starting work at a automotive plant working 84 hours for a few weeks and decreased my work loads over time at other places. I was set on having another abortion originally ... but I had a really heart felt shower talk with my tummy one-day and said I'm having my baby and I told it ... I'm gonna find you the best darn daddy!
Me and Kyle moved in together after dating. Best choice I ever made! We didn't have much but we worked hard together and made one another laugh doing it. He kept our baby fed while cooking and handling laundry. He built Steven's crib with a nursery while eventually clipping the cord in the delivery room on my due date April 18th, 2018. We had to be the most grumpiest parents without sleep. But the happiest. Kyle carried Steven into his nursery with a big goofy looking wide smile on his face, all for Steven. A child we named after Kyle's Father Steven who passed away in 2017 from a heart attack. I had came into the picture at a grieving time. But I think it turned into a blessing instead. Placing structure over depression of losing a grandfather for Steven.
I had flipped my whole world upside down and up again to move to Livingston county Michigan, United States. Our friends and family were so supportive. Steven had a great twelve months. The first six months we introduced him to everyone who was dying to meet him. Going to barbecues and enjoying a hot summer season. Lot of first pediatric visits. Steven didn't move a lot, we didn't even start belly time until 3-4 months old. Time marched on within 6 to 8 months of age seeing failed milestones. We didn't have attentive pediatricians which bothered me. She moved out of state after maternity leave. But she told us Cerebral Palsy or even Muscular Dystrophy were suspected due to height patterns and delays.
When we started giving Steven baths we ran into knee lock ups. We couldn't prevent it resulting in an injury in the tub near the faucet. It was like impossible to bend my son's core sometimes to place him into high chairs at places to eat at. We switched to another doctor so we could have a Pediatrician that would work one on one with Steven's needs. Our current medical facility wasn't giving us any slack on appointment cancellations with how many other specialists we saw , a nurse even talked over me during a day that was overly stressful with planning specialists and I was super freaked about my child having a life long disability or disease. We met our new doctor who gave Steven a diagnosis is Hypertonia as well as Hypotonia or low muscle tone. My side of the family wasn't taking it too seriously. So I made sure to ask "Is this a real, major issue?" She said "unfortunately yes it is." My mother had come with me for support. My sister was in the next state over from us. My brother worked a lot too. I think my mother needed my support more. The Neuro doctor made us an appointment for a Neuro Muscular specialist. She said it was just Hypotonia as in low muscle tone from the waist down, diagnosing Diaplegic Cerebral Palsy to my son.
I wanted more answers and more help. We met a rehab doctor Young who suspected a Mitochondrial Myopathy Metabolic condition or others. We signed on with Livingston county Early on services for early intervention. His milestones for gross and fine motor we're at 3-5 months and 7 month ranges; 7 month expressive and receptive milestone delays. Today we do speech therapy, occupational and physical therapy and an extra outside therapy. We put together that Steven couldn't sit up, crawl or walk. He could bear weight without balance. Steven was born with GERD issues along with going # 2. And #2 is regressing due that a yogurt diet isn't helping as much as it did.
We met an orthopedic surgeon and Neuro Muscular specialists at Shriners Hospital for Children, Chicago for a second opinion. Steven has no structure problems. All testing went thru Beaumont Michigan. But Shriners always said if we need anything, any equipment just let them know. We worked on therapy a lot of the time after for weeks. I had no answers to explain Steven's issues. We had some kind of diagnosis but we all knew it wasn't quite it. I made and cancelled Henry Ford. Because we now have real answers! All thanks to the Beaumont care system.
I wanted Kyle to come the day we met with genetics. I guess our hope was so burned out. I told Kyle just to go to work. I didn't want to waste a vacation day for him on another dead end. Wanted to bite my tongue that day because we actually got answers. Steven had two gene conditions they said. Very cut and dry conversation I thought just full of shock. They educated me on all it was, basic biology particularly. It wasn't the cell but it was what was in the cell, not the Mitochondria but what was in the cell at the time of creation being called DNA. . Steven has the KCNB1 gene mutation and the IQSEC2 gene mutation. We don't have the exact variants yet. But right now our main priority is to treat West Syndrome spasms . We have tried Keppra, Topamax, Acthar injections, Prednisone treatments. And soon Sabril and if that fails ... add the Keto diet. You thought the newborn stage was hard... welcome back. We've seen eye doctors, Gastro doctors, Cardiac doctors , Neuro and Neuro Muscular doctors, surgical ENT doctors , Orthopedic doctors , Surgeons, Rehabilitation Center doctors, and four therapy specialists, Epilepsy specialists with imaging and lab testing centers for MRIs, CT scans and genetic and chromosome panel testing. We're being very patient parents. But for more updates on what's next for us ... check out our group and page Steven has moves!
Child protective services found it was in Steven's best interest for us to stay away and cancel parenting time due to sibling cruelty acts to the half brother newborn that his father has with another woman after I left my ex originally. I got out of the situation and was smart. I moved back home with my parents while starting work at a automotive plant working 84 hours for a few weeks and decreased my work loads over time at other places. I was set on having another abortion originally ... but I had a really heart felt shower talk with my tummy one-day and said I'm having my baby and I told it ... I'm gonna find you the best darn daddy!
Me and Kyle moved in together after dating. Best choice I ever made! We didn't have much but we worked hard together and made one another laugh doing it. He kept our baby fed while cooking and handling laundry. He built Steven's crib with a nursery while eventually clipping the cord in the delivery room on my due date April 18th, 2018. We had to be the most grumpiest parents without sleep. But the happiest. Kyle carried Steven into his nursery with a big goofy looking wide smile on his face, all for Steven. A child we named after Kyle's Father Steven who passed away in 2017 from a heart attack. I had came into the picture at a grieving time. But I think it turned into a blessing instead. Placing structure over depression of losing a grandfather for Steven.
I had flipped my whole world upside down and up again to move to Livingston county Michigan, United States. Our friends and family were so supportive. Steven had a great twelve months. The first six months we introduced him to everyone who was dying to meet him. Going to barbecues and enjoying a hot summer season. Lot of first pediatric visits. Steven didn't move a lot, we didn't even start belly time until 3-4 months old. Time marched on within 6 to 8 months of age seeing failed milestones. We didn't have attentive pediatricians which bothered me. She moved out of state after maternity leave. But she told us Cerebral Palsy or even Muscular Dystrophy were suspected due to height patterns and delays.
When we started giving Steven baths we ran into knee lock ups. We couldn't prevent it resulting in an injury in the tub near the faucet. It was like impossible to bend my son's core sometimes to place him into high chairs at places to eat at. We switched to another doctor so we could have a Pediatrician that would work one on one with Steven's needs. Our current medical facility wasn't giving us any slack on appointment cancellations with how many other specialists we saw , a nurse even talked over me during a day that was overly stressful with planning specialists and I was super freaked about my child having a life long disability or disease. We met our new doctor who gave Steven a diagnosis is Hypertonia as well as Hypotonia or low muscle tone. My side of the family wasn't taking it too seriously. So I made sure to ask "Is this a real, major issue?" She said "unfortunately yes it is." My mother had come with me for support. My sister was in the next state over from us. My brother worked a lot too. I think my mother needed my support more. The Neuro doctor made us an appointment for a Neuro Muscular specialist. She said it was just Hypotonia as in low muscle tone from the waist down, diagnosing Diaplegic Cerebral Palsy to my son.
I wanted more answers and more help. We met a rehab doctor Young who suspected a Mitochondrial Myopathy Metabolic condition or others. We signed on with Livingston county Early on services for early intervention. His milestones for gross and fine motor we're at 3-5 months and 7 month ranges; 7 month expressive and receptive milestone delays. Today we do speech therapy, occupational and physical therapy and an extra outside therapy. We put together that Steven couldn't sit up, crawl or walk. He could bear weight without balance. Steven was born with GERD issues along with going # 2. And #2 is regressing due that a yogurt diet isn't helping as much as it did.
We met an orthopedic surgeon and Neuro Muscular specialists at Shriners Hospital for Children, Chicago for a second opinion. Steven has no structure problems. All testing went thru Beaumont Michigan. But Shriners always said if we need anything, any equipment just let them know. We worked on therapy a lot of the time after for weeks. I had no answers to explain Steven's issues. We had some kind of diagnosis but we all knew it wasn't quite it. I made and cancelled Henry Ford. Because we now have real answers! All thanks to the Beaumont care system.
I wanted Kyle to come the day we met with genetics. I guess our hope was so burned out. I told Kyle just to go to work. I didn't want to waste a vacation day for him on another dead end. Wanted to bite my tongue that day because we actually got answers. Steven had two gene conditions they said. Very cut and dry conversation I thought just full of shock. They educated me on all it was, basic biology particularly. It wasn't the cell but it was what was in the cell, not the Mitochondria but what was in the cell at the time of creation being called DNA. . Steven has the KCNB1 gene mutation and the IQSEC2 gene mutation. We don't have the exact variants yet. But right now our main priority is to treat West Syndrome spasms . We have tried Keppra, Topamax, Acthar injections, Prednisone treatments. And soon Sabril and if that fails ... add the Keto diet. You thought the newborn stage was hard... welcome back. We've seen eye doctors, Gastro doctors, Cardiac doctors , Neuro and Neuro Muscular doctors, surgical ENT doctors , Orthopedic doctors , Surgeons, Rehabilitation Center doctors, and four therapy specialists, Epilepsy specialists with imaging and lab testing centers for MRIs, CT scans and genetic and chromosome panel testing. We're being very patient parents. But for more updates on what's next for us ... check out our group and page Steven has moves!