BathGabe being a goofy little man :)
Sunday, June 30, 2013
Sunday, June 23, 2013
GavYou know, disability or not, my children are absolutely perfect. I know people may look at us weird, or be afraid or overwhelmed to visit or spend time alone with them, but they are the greatest blessing I've ever been given. I wouldn't honestly trade a single part of my life for the world. 
Big man running in his sprinkler! :)
E and his cousin Jonah (2 yrs), giving me the stink eye when it was time to come in! Playing at Ethan's new water table :)
Gavin's new "moon boots" :) 
Finally gaining a little head control! 
Gabe being a silly goose :) 
New sandbox :) clockwise from left:dad, Gavin, Xavier's cousin Zander, Ethan, and Xavier. They were all having a blast! 
Gavin especially loved the sand! Gabe had to miss out because he was napping. 
Hanging with his brother always picking his nose lol
Gabe and Ethan sharing a bagel. They were offering each other bites, taking it back fast, and laughing at each other. 
Waiting for his ride to Sunday school! He got to go to the 3yr old class today. He flirted and played with 2 3yr old girls and a 4 yr old. Already a ladies man! 
Happy boys! They got to giggle with mama while big brother was at church :)
My boys clockwise: Xavier (almost 7!!), Ethan (21 months), Gavin & Gabriel (10 months).
Aunt Kristen and Gabe :)
Gabe and Ethan sharing a bagel. They were offering each other bites, taking it back fast, and laughing at each other. Waiting for his ride to Sunday school! He got to go to the 3yr old class today. He flirted and played with 2 3yr old girls and a 4 yr old. Already a ladies man! Saturday, June 8, 2013
Update June 2013
Hey readers, friends, and family.
Sorry, it has been so long since an update on our boys! Gavin and Gabriel are now 10 months old actual, 8 months adjusted (tomorrow). The boys have both been diagnosed with Infantile Cerebral Palsy since my last update. Gabe's case is mild, while Gavin's case is moderate to severe. Both have the spastic form.
Gabe and Gabe are now wearing 18 month clothes and weighs just over 20lbs. Gabe is about an inch longer then Gavin though. I will have to measure them later. Gavin's spastic CP effects all four limbs. His left arm is the tightest. He has poor head and trunk support and is still not rolling either way, sitting, scooting, or crawling. Gabe however is rolling both ways and is scooting by using his arms to pull himself around when on the floor but is up on all fours and rocking in his crib! He has great head control and is eating regular table food, as well as bottles and purees. Gavin is still eating sparing amounts of table food (mostly soft, easily dissoluble things), purees, and bottles.
Both boys now doing Speech, Occupational, Physical, and Developmental therapies once a week and Gavin is also doing Vision Developmental therapy once a week as well. We are extremely busy! We are also making almost 2-3 trips to specialists in St. Louis for Ophthalmologist, Gastroenterology, Orthotist, Orthopedic surgeon, Skull Deformity Clinic, Cerebral Palsy Clinic, and Neurologist. We are also still seeing our regular Pediatrician in Springfield, Il and are currently looking for a new physical therapist because the waiting list for in home therapy is until October 2013 and we definitely need someone before then.
Gavin will soon be getting Benix gloves in order to help pull out his inward dwelling thumbs and allow him to more easily attempt to grasp objects. He has a major delay in motor planning. He will continue to make attempts to grab at or touch something long after you have removed the object or him from the area. He is still having a ton of acid reflux issues. His vision is limited as he has been diagnosed with mild cortical blindness and being severely farsighted. His left eye also is also slightly inward dwelling so his peripheral vision is severely impaired making tracking objects a challenge. He has trouble supporting his upper body weight and head when he is on his tummy. Soon he will be receiving a soft collar to wear when he is awake and sitting to help stabilize himself. He is kicking reciprocally and is moving around but unfortunately he drags his face and arms around behind/underneath him. He is finally just starting to make real attempts at grasping for toys though! His truck stability/strength is very low so he cannot sit unsupported and thrusts frequently when he is supported. He is also going to start wearing AFO's (ankle/foot orthotics) in order to help his ankles and feet develop properly. He keeps his toes curled except for when hes asleep. The AFOs are like little splints that keeps his feet at 90 degree angles in order to promote the proper formation of his feet so hopefully standing will be easier when the time comes. He uses his tone to his advantage and can support his full body weight on his legs. He however does scissor (cross his feet at his ankles) quite a bit so we are working on positioning to help correctly form his hips! The baclofen (medication) they put Gav on was way too much for him. He turned into a wet noodle. We will soon be trying botox injections into his ankles, knees, hits, wrists, elbows, shoulders, and the base of his thumbs. Still no majors sounds besides "ahh, oohhh, and ewws."
He is the happiest little man though :) Every time you approach him and say his name is a happy/sing-songy voice he gets this beaming smile from ear to ear. He is very easy going when you are paying attention to him but the moment you step away he becomes a very jealous little guy! His favorite things to do are watching his brothers play, suck/gum on anything that his brothers give him, and play with toys that have a lot of noises and lights! He loves Ethans alphabet dinosaur.
Gabe is doing well. He also going to receive Benix gloves in order to help keep his hands open to create a flat palm to support himself in crawling and tummy time. Gabe doesnt have issues reaching and transferring objects and also self feeds now with finger foods and a bottle. We still have the raking grasp though but pincher is emerging! He can roll both ways and scoots around like Ethan did by using his arms and one leg! He is up on all fours in the crib rocking back and forth but nothing yet on the ground. His vision is perfect, got a clean bill of health. He has issues sitting because he has mild scoliosis. He will soon be getting a compression vest with rod stays, sort of like a corset with boning to help him sit up right. His tightness is mainly in his right arm and hips. He sits on his tailbone when assisted due to the scoliosis. We are working with an Orthopedic surgeon on his treatment plan and are hoping the vest will allow us to see results without more invasive treatments. Gabe also has issues putting pressures on his legs. His knees and ankles give out. He is also getting AFOs in order to help his ankle development.
He is a social butterfly :) He says "dada, mama, baba," clicks his tounge, and blows farts. His favorite thing to do is steal the toys Ethan sits down and try to get E to play with him! They are so interactive now and both say "dada" back and forth. His favorite thing to do is walk backwards in the walker.
Ethan is getting so big! He is currently in Occupational, Speech, and Developmental therapy once a week. He has a speech delay and also has been unofficially diagnosed with SPD, Sensory Processing disorder.
Sorry, it has been so long since an update on our boys! Gavin and Gabriel are now 10 months old actual, 8 months adjusted (tomorrow). The boys have both been diagnosed with Infantile Cerebral Palsy since my last update. Gabe's case is mild, while Gavin's case is moderate to severe. Both have the spastic form.
Gabe and Gabe are now wearing 18 month clothes and weighs just over 20lbs. Gabe is about an inch longer then Gavin though. I will have to measure them later. Gavin's spastic CP effects all four limbs. His left arm is the tightest. He has poor head and trunk support and is still not rolling either way, sitting, scooting, or crawling. Gabe however is rolling both ways and is scooting by using his arms to pull himself around when on the floor but is up on all fours and rocking in his crib! He has great head control and is eating regular table food, as well as bottles and purees. Gavin is still eating sparing amounts of table food (mostly soft, easily dissoluble things), purees, and bottles.
Both boys now doing Speech, Occupational, Physical, and Developmental therapies once a week and Gavin is also doing Vision Developmental therapy once a week as well. We are extremely busy! We are also making almost 2-3 trips to specialists in St. Louis for Ophthalmologist, Gastroenterology, Orthotist, Orthopedic surgeon, Skull Deformity Clinic, Cerebral Palsy Clinic, and Neurologist. We are also still seeing our regular Pediatrician in Springfield, Il and are currently looking for a new physical therapist because the waiting list for in home therapy is until October 2013 and we definitely need someone before then.
Gavin will soon be getting Benix gloves in order to help pull out his inward dwelling thumbs and allow him to more easily attempt to grasp objects. He has a major delay in motor planning. He will continue to make attempts to grab at or touch something long after you have removed the object or him from the area. He is still having a ton of acid reflux issues. His vision is limited as he has been diagnosed with mild cortical blindness and being severely farsighted. His left eye also is also slightly inward dwelling so his peripheral vision is severely impaired making tracking objects a challenge. He has trouble supporting his upper body weight and head when he is on his tummy. Soon he will be receiving a soft collar to wear when he is awake and sitting to help stabilize himself. He is kicking reciprocally and is moving around but unfortunately he drags his face and arms around behind/underneath him. He is finally just starting to make real attempts at grasping for toys though! His truck stability/strength is very low so he cannot sit unsupported and thrusts frequently when he is supported. He is also going to start wearing AFO's (ankle/foot orthotics) in order to help his ankles and feet develop properly. He keeps his toes curled except for when hes asleep. The AFOs are like little splints that keeps his feet at 90 degree angles in order to promote the proper formation of his feet so hopefully standing will be easier when the time comes. He uses his tone to his advantage and can support his full body weight on his legs. He however does scissor (cross his feet at his ankles) quite a bit so we are working on positioning to help correctly form his hips! The baclofen (medication) they put Gav on was way too much for him. He turned into a wet noodle. We will soon be trying botox injections into his ankles, knees, hits, wrists, elbows, shoulders, and the base of his thumbs. Still no majors sounds besides "ahh, oohhh, and ewws."
He is the happiest little man though :) Every time you approach him and say his name is a happy/sing-songy voice he gets this beaming smile from ear to ear. He is very easy going when you are paying attention to him but the moment you step away he becomes a very jealous little guy! His favorite things to do are watching his brothers play, suck/gum on anything that his brothers give him, and play with toys that have a lot of noises and lights! He loves Ethans alphabet dinosaur.
Gabe is doing well. He also going to receive Benix gloves in order to help keep his hands open to create a flat palm to support himself in crawling and tummy time. Gabe doesnt have issues reaching and transferring objects and also self feeds now with finger foods and a bottle. We still have the raking grasp though but pincher is emerging! He can roll both ways and scoots around like Ethan did by using his arms and one leg! He is up on all fours in the crib rocking back and forth but nothing yet on the ground. His vision is perfect, got a clean bill of health. He has issues sitting because he has mild scoliosis. He will soon be getting a compression vest with rod stays, sort of like a corset with boning to help him sit up right. His tightness is mainly in his right arm and hips. He sits on his tailbone when assisted due to the scoliosis. We are working with an Orthopedic surgeon on his treatment plan and are hoping the vest will allow us to see results without more invasive treatments. Gabe also has issues putting pressures on his legs. His knees and ankles give out. He is also getting AFOs in order to help his ankle development.
He is a social butterfly :) He says "dada, mama, baba," clicks his tounge, and blows farts. His favorite thing to do is steal the toys Ethan sits down and try to get E to play with him! They are so interactive now and both say "dada" back and forth. His favorite thing to do is walk backwards in the walker.
Ethan is getting so big! He is currently in Occupational, Speech, and Developmental therapy once a week. He has a speech delay and also has been unofficially diagnosed with SPD, Sensory Processing disorder.
"Sensory processing (sometimes called "sensory integration" or SI) is a term that refers to the way the nervous system receives messages from the senses and turns them into appropriate motor and behavioral responses. Whether you are biting into a hamburger, riding a bicycle, or reading a book, your successful completion of the activity requires processing sensation or "sensory integration."
Sensory Processing Disorder (SPD, formerly known as "sensory integration dysfunction") is a condition that exists when sensory signals don't get organized into appropriate responses. Pioneering occupational therapist and neuroscientist A. Jean Ayres, PhD, likened SPD to a neurological "traffic jam" that prevents certain parts of the brain from receiving the information needed to interpret sensory information correctly. A person with SPD finds it difficult to process and act upon information received through the senses, which creates challenges in performing countless everyday tasks. Motor clumsiness, behavioral problems, anxiety, depression, school failure, and other impacts may result if the disorder is not treated effectively."
So Ethan is a sensory seeker. He belly flops, back flops, hits his head purposefully and repeatedly on things, pinches himself and others, hits himself and others, over stuffs his mouth, has an extremely high pain tolerance, and extremely high energy level, is above average intelligence for his age and has a speech delay. He enjoys being held really tight, eating foods that are VERY flavorful or spicy, very cold things. He loves water and playing in it. He has trouble falling asleep and staying asleep. He generally avoids eye contact, hates busy places. He will hurt himself until he can try hard enough to feel it and then wants to be held tight to fall asleep. He also hyper-focuses and doesn't often respond to his name. He is ahead on all his fine motor skills and is performing things most kids don't do until early 3's. The type of SPD his therapists and Pediatrician have settled upon is called "Sensory Modulation Disorder." He leans more towards the sub type of under-responsivity and sensory craving. I know most of my family just chocks it up to being "typical toddler behavior," but its beyond that. He does things to such an extreme that it is considered a-typical.
Since starting therapy his vocabulary has increased. 2 months ago when we started at 20 months, his vocabulary was at a 9-12 month level. He is now frequently and correctly saying "mama, dada, bubba, sippy, and thank you." which is WAY more then we ever expected so fast. He is constantly trying to imitate adult behavior and words. :) It is so exciting to see him also making eye contact with other adults and children. We've started to incorporate joint compression and brushing at nap and bed times with some success. We are debating on whether or not to start melatonin but Tim and I would rather not medicate and continue to try therapeutic techniques. He soon has a dignostic evaluation with a developmental/behavioral pediatrician named Charles Morton out of Peoria. So we should have more concrete ideas and treatment plan soon!
Hes a wild little man and prefers to jump off the couch, climb into the sink, table, open doors, and run in circles chasing and tumbling after his big red ball outside :)
Well thats all for now!
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