Thursday, April 28, 2011
video of Kodman's hands after years of meds:(
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April 28th
I just somehow erased this wonderful huge amount of info..crazy frustrating.
So, anyways..Kodin was born on June the 19th 1995, in Kealakekua, Hawaii. He weighed in at a wopping 9.5 pounds. He never lost his birth weight as children customarily do. He thouroughly loved his life of sleeping and eatting. Sam Choy (a chef that makes generous portion Hawaiian style grinds), said Kodin should be the first "haole Sumo." (Haole means all sorts of things, but mostly that he is white). Kodman wasn't very vocal and hardly cried. I was going to college taking Psychology(which covers human development), Early Childhood Education (also covering development, and Human Biology (guess what, yup,human development). Besides learning about human development, I must have read hundreds of books about babies coming into the world and blooming wonderfully from there. Not a ton of anything was happening. There was no babbling, no crying really either. Kod didn't start to walk till he was 2ish. Around 2ish his father and I seperated as well. I enrolled Kodin in a program at the Department of Health, an infant and toddler program. I learned that Kodin was worse off than most, and that I should consider coming to grips with the idea that my son had some very serious issues. Convincing yourself is one thing (not a super fun thing might I add)..convincing others, that I was not a jerk, as they assumed, but really needing to accept this in order to move forward, devise a plan and get things accomplished. P.S.I am a young mom at this point..I was 21 when he was born. Point is, I wasn't taken very seriously with my lamenting. Kodin was staying at my friends during the day so I could work, until she called and said he really needed one on one attention.
I will return. Kodin didn't wake me up at 5 am like he loves to do (lame), I couldn't sleep, and now that I have re-written this whole chunk of info, I feel very sleepy. And, although they are replacing the roof next door and it sounds like they are doing my roof..I gotta sneak these luxuries when they present themeslves. I usually have millions of appointments,errands and such, but the weekend is almost here and I am stealing today for me, the phone is an explotion of calls..this kid and myself generate a ton of communication (most of which get us no where, or provides nadda). I already had a call from Kodin's teacher (who is awesome btw) who was filling out paperwork, and needed some answers, and pretty sure the bank called about my overdraft..so phone is totally off now. We shall continue later...
So, anyways..Kodin was born on June the 19th 1995, in Kealakekua, Hawaii. He weighed in at a wopping 9.5 pounds. He never lost his birth weight as children customarily do. He thouroughly loved his life of sleeping and eatting. Sam Choy (a chef that makes generous portion Hawaiian style grinds), said Kodin should be the first "haole Sumo." (Haole means all sorts of things, but mostly that he is white). Kodman wasn't very vocal and hardly cried. I was going to college taking Psychology(which covers human development), Early Childhood Education (also covering development, and Human Biology (guess what, yup,human development). Besides learning about human development, I must have read hundreds of books about babies coming into the world and blooming wonderfully from there. Not a ton of anything was happening. There was no babbling, no crying really either. Kod didn't start to walk till he was 2ish. Around 2ish his father and I seperated as well. I enrolled Kodin in a program at the Department of Health, an infant and toddler program. I learned that Kodin was worse off than most, and that I should consider coming to grips with the idea that my son had some very serious issues. Convincing yourself is one thing (not a super fun thing might I add)..convincing others, that I was not a jerk, as they assumed, but really needing to accept this in order to move forward, devise a plan and get things accomplished. P.S.I am a young mom at this point..I was 21 when he was born. Point is, I wasn't taken very seriously with my lamenting. Kodin was staying at my friends during the day so I could work, until she called and said he really needed one on one attention.
I will return. Kodin didn't wake me up at 5 am like he loves to do (lame), I couldn't sleep, and now that I have re-written this whole chunk of info, I feel very sleepy. And, although they are replacing the roof next door and it sounds like they are doing my roof..I gotta sneak these luxuries when they present themeslves. I usually have millions of appointments,errands and such, but the weekend is almost here and I am stealing today for me, the phone is an explotion of calls..this kid and myself generate a ton of communication (most of which get us no where, or provides nadda). I already had a call from Kodin's teacher (who is awesome btw) who was filling out paperwork, and needed some answers, and pretty sure the bank called about my overdraft..so phone is totally off now. We shall continue later...
Wednesday, April 27, 2011
April 27th,2011
I want to start by saying that this is a brand new idea for me. I will try harder to check my spelling and such as I go on. I have so much to say and have to start with a little overview of our situation for those that don't know. I know I said I would start with meds today, but that seems pointless if new people have no idea where I am coming from. So, a little info sounds like a great idea:)
Kodin was born in Kealakekua, Hawaii on June the 19th,1995...and his bus just arrived..so,I have to go:)
Kodin was born in Kealakekua, Hawaii on June the 19th,1995...and his bus just arrived..so,I have to go:)
Tuesday, April 26, 2011
Tuesday, April 26th Weight Gain continued...
I mentioned earlier today Kodin moving into my home from Chileda(where he used to reside), was a reason why Kodin has gained an uncomfortable (for him, and school, and myself)amount of weight as of late. For Kodin's sake, I'm sure it uncomfortable to move around with this new found weight. He sweats abnormally as it is, extra weight is an unnecessary sweater. It makes it difficult to get up from his beanbag chair I have noticed:) The school always fills me in on his monsterous spikes when they weigh him in. It must seem to them that some serious controls need to be placed in the home; I believe it has more to do with locks and disabling tools that prevent the guy from getting at stuff (ones I have no money to put into affect). He is not being pampered by food, as they must assume. I admit, I was a little lost as to how to handle the new found situation with my son in January, I ordered pizza and succumed to the candy "reinforcemnt" program Kod is accustomed to. It didn't take long to realize, pizza is expensive, and daily shopping was out of the question. We eat good things now ($considerably expensive), but we eat and don't exercise. Come on Spring. That leads into reasons I am concerned about the weight gain. I am concerned, because with his lack of exercise (is unhealthy,) is my lack of exercise. Kodin has gone from a 32, to a 36(tight). I have gained 15 pounds(since January). When the weather is nice; I have learned, we can walk together. It's lovely that the areas closest to us have no major hills, our walk from our house to downtown La Crosse is seriously..flat (unlike our stomachs;). We can both walk together, and he holds my hand(mostly). The weather has to be nice though, that we don't have. It is 40 degrees right now. Ug, snow storm the weekend before last. So, if it's nice there is something we can do that is only life threatening 50 percent of the time. The other 50 percent is when he overpowers me and wants to go in another direction,or keep walking into the street at a busy corner,or take off at a run (which he only does when there is danger-he NeVeR runs otherwise-he can run towards). I have some very creative and quick moves to try and prevent any major incedents. We are alive, but our chances of injury will increase with the wonderful sunshine..whenever that shows up. I hate Kodin being so uncomfortabley large, and it just gives people another reason to stare. And, jeans are expensive!! This child is expensive; sweet, loves his mom, wants to be good(mostly), but expensive. I think his breathing is deeper and more labored and he snores louder as well.
I should mention that Kodin is a teenager, and I have changed his meds as two other contributing factors. Teenagers need to eat more, beacuse they need the fuel for the energy and growing, I get that. But, he should be running around as a teen, doing crazy, energetic, adventurous, dangerous, boy/teen stuff. He isn't. So, therefore..outward growth far surpasses upward growth.
I have changed Kodin's meds..and that is where I will start tomorrow..Good Night
I should mention that Kodin is a teenager, and I have changed his meds as two other contributing factors. Teenagers need to eat more, beacuse they need the fuel for the energy and growing, I get that. But, he should be running around as a teen, doing crazy, energetic, adventurous, dangerous, boy/teen stuff. He isn't. So, therefore..outward growth far surpasses upward growth.
I have changed Kodin's meds..and that is where I will start tomorrow..Good Night
April 26, 2011
Kodin has a very limited ability to learn new things. His attention span is extremely limited, it can be non- existant if he is overly excited (too many outside stimulants add to this; excess movement, noise, people, loud noises, more than one thing he likes-like a dog, and a small child..or just a dog, or small child:). Good news though, when he does learn something new he is eager to use it. I taught him how to peal a mandrine orange last night. He had already tried to bite it..so a piece was missing. He was sooo excited for himself. To celebrate he shoed it in his face in two large pieces. This am, he was trying to shove an orange in his pocket as he left for the bus. I had givin him one as soon as he saw them in the bowl on the table when he wondered into the kitchen half awake...but equiped with one he can now share his discovery with others. He really does things he is taught to make those that care for him happy, but with the orange, he can show off his skill and eat.
Eatting..oh..Kodin and eatting. Not good. Kodin has always eatten too much. He doesn't understand the concept of choking,or exploding from food intake. He is pretty much in the midst of a major weight increase. There are several reasons for this actually.
The first reason Kodman is gaining astronomical amounts of weight is due to the fact that he moved in with me in January from the institution Chileda, where he has resided for the last 6+ years. Kodin's funding got cut from Hawaii Department of education that has been trying to detatch from being responsible for his care since they started. Sooo, anyways, here we are Kodin back with mom (who by no means is equiped to care for my very large and sometimes dangerous child). My house, unlike Chileda, has a fridge with food in it at all times, unlocked cuboards with..food..I know, whats wrong with me?! Chileda is contracted out with a nearby hospital (Franciscan Skemp) to provide meals that they deliver for all breakfast,lunch and dinner(supper in Wisconsin). If Kodin wasn't hungry or perhaps busy doing something he thought was more important at the time, then he missed that meal..or it was saved for him, but then he might not like it anymore. Point is, there wasn't always food in the fridge. I tried to go shopping every day, but that is straight rediculous if your child teeters precariously on top of a bench so you can try and safely get him into a shopping carts. (Visualize a 200 pound male, at about 5'6 who is very clumsy and perhaps more interested in the people and cookies(that always seem to be located in large quantities by the front of Walmart(which is the only place with a bench right by the carts)). Danger right?! Anyways, after getting him in the cart you have to constantly stear clear of people and displays, while towing another cart behind you..fun stuff. Kodi has long arms. Seriously fast, long arms. He can't brace himself from a fall to save his life, but he can whip a box of chocolate off the shelf and have it open before you have realized there was chocolate in the veggie area. So, while yelling "HI!" at the top of his lungs, constantly..in his now very male, teenage voice (intimidating), at all who get anywhere near us..he tries to swip hugs and hands, and hit people to get their attention. He is grossly strong btw, so an innocent swat, or grab can be painful and harmful. A little person too close to the cart can eat metal in a split second. People don't like getting grabbed, or hit. Just saying.
I don't go shopping everyday, so we have a fridge with food. There is no way to lock the fridge. I could buy a new fridge; no I couldn't, I don't have money, and the locks are made of plastic..not metal. So he can get in. When he is home he wants to eat. We have good food (thank you mom..and I thank her because fruit and veggies for a 200 pound child are cha ching$$). I am always cooking or being buried in dish disaster. When it's so brutally cold, outtings lose their omph. So we get big when it's cold.
Reason number two for gaining weight..brutally cold winter, and just so happens this spring as well. And i shall continue later...
Eatting..oh..Kodin and eatting. Not good. Kodin has always eatten too much. He doesn't understand the concept of choking,or exploding from food intake. He is pretty much in the midst of a major weight increase. There are several reasons for this actually.
The first reason Kodman is gaining astronomical amounts of weight is due to the fact that he moved in with me in January from the institution Chileda, where he has resided for the last 6+ years. Kodin's funding got cut from Hawaii Department of education that has been trying to detatch from being responsible for his care since they started. Sooo, anyways, here we are Kodin back with mom (who by no means is equiped to care for my very large and sometimes dangerous child). My house, unlike Chileda, has a fridge with food in it at all times, unlocked cuboards with..food..I know, whats wrong with me?! Chileda is contracted out with a nearby hospital (Franciscan Skemp) to provide meals that they deliver for all breakfast,lunch and dinner(supper in Wisconsin). If Kodin wasn't hungry or perhaps busy doing something he thought was more important at the time, then he missed that meal..or it was saved for him, but then he might not like it anymore. Point is, there wasn't always food in the fridge. I tried to go shopping every day, but that is straight rediculous if your child teeters precariously on top of a bench so you can try and safely get him into a shopping carts. (Visualize a 200 pound male, at about 5'6 who is very clumsy and perhaps more interested in the people and cookies(that always seem to be located in large quantities by the front of Walmart(which is the only place with a bench right by the carts)). Danger right?! Anyways, after getting him in the cart you have to constantly stear clear of people and displays, while towing another cart behind you..fun stuff. Kodi has long arms. Seriously fast, long arms. He can't brace himself from a fall to save his life, but he can whip a box of chocolate off the shelf and have it open before you have realized there was chocolate in the veggie area. So, while yelling "HI!" at the top of his lungs, constantly..in his now very male, teenage voice (intimidating), at all who get anywhere near us..he tries to swip hugs and hands, and hit people to get their attention. He is grossly strong btw, so an innocent swat, or grab can be painful and harmful. A little person too close to the cart can eat metal in a split second. People don't like getting grabbed, or hit. Just saying.
I don't go shopping everyday, so we have a fridge with food. There is no way to lock the fridge. I could buy a new fridge; no I couldn't, I don't have money, and the locks are made of plastic..not metal. So he can get in. When he is home he wants to eat. We have good food (thank you mom..and I thank her because fruit and veggies for a 200 pound child are cha ching$$). I am always cooking or being buried in dish disaster. When it's so brutally cold, outtings lose their omph. So we get big when it's cold.
Reason number two for gaining weight..brutally cold winter, and just so happens this spring as well. And i shall continue later...
Monday, April 25, 2011
Kodin April, 25th-Monday
Aloha, my name is Dolena Brand. My son, Kodin has a rare genetic disorder called Angelman Syndrome. I am looking for a place to express what Kodin is all about. How he is different than any other person, and how we deal with that.
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