Aa
OT Update on TJ, we had a mini-evaluation done, GREAT RESULTS!
I haven't been on MH very often so I'm sorry ladies for my dissapearing act, lol.
His Caseworker with the local Regional Center does yearly evaluations. The official evaluations are at 6months and 1year marks respectively. She does perform unofficial "Mini" evaluations every 3 or 4 months just to have an idea of how well he's moving towards his goals. Unfortunately during the last 18 months he has only met just a few goals. He's met maybe 2 or 3 of his goals.
His estimated developmental age has continued to be between 6-10 months even up to about November 2010.
His goals to reach by 05/2011 were to:
~~~~~~INCREASE Gross Motor Skills~~~~~
Be able to maintain unsupported sit for 30-60 seconds and be able to pull back to a sit afterwords.
~~~~~~INCREASE Fine Motor Skills~~~~~~
Be able to pull a string in order to retrieve a toy. And be able to voluntarily release a block or other small toy into a container
~~~~~ INCREASE Expressive Language Skills~~~~~~
He should be able to imitate certain non-speech sounds and gestures. He should be able to vocalize or sign "mama, or Dada" (Sign Language)
~~~~~~INCREASE Receptive Language Skills~~~~~
He should consistantly respond to simple requests with gestural clues (sign language)
and he should look in the appropriate places when asked "Where is the _____ ?"
A few more goals were to (" sit on his own with no support, learn to use his hands better and practice hand eye coordination, be able to pull a peg or block out of a container of some sort and purposefully place it back instead of throwing it")~~~~~~~~~~~~~ This past Monday Kathy (caseworker) and Wendi (teacher) did one of the Mini-Evaluations. After so long of either not meeting any goals or only meeting one or two at his evals...
TJ met ALL OF THEM!!!!! He also did some extra things! according to his teacher and caseworker most of it places TJ at the 12+ month mark. We are so friggen happy!
His Caseworker with the local Regional Center does yearly evaluations. The official evaluations are at 6months and 1year marks respectively. She does perform unofficial "Mini" evaluations every 3 or 4 months just to have an idea of how well he's moving towards his goals. Unfortunately during the last 18 months he has only met just a few goals. He's met maybe 2 or 3 of his goals.
His estimated developmental age has continued to be between 6-10 months even up to about November 2010.
His goals to reach by 05/2011 were to:
~~~~~~INCREASE Gross Motor Skills~~~~~
Be able to maintain unsupported sit for 30-60 seconds and be able to pull back to a sit afterwords.
~~~~~~INCREASE Fine Motor Skills~~~~~~
Be able to pull a string in order to retrieve a toy. And be able to voluntarily release a block or other small toy into a container
~~~~~ INCREASE Expressive Language Skills~~~~~~
He should be able to imitate certain non-speech sounds and gestures. He should be able to vocalize or sign "mama, or Dada" (Sign Language)
~~~~~~INCREASE Receptive Language Skills~~~~~
He should consistantly respond to simple requests with gestural clues (sign language)
and he should look in the appropriate places when asked "Where is the _____ ?"
A few more goals were to (" sit on his own with no support, learn to use his hands better and practice hand eye coordination, be able to pull a peg or block out of a container of some sort and purposefully place it back instead of throwing it")~~~~~~~~~~~~~ This past Monday Kathy (caseworker) and Wendi (teacher) did one of the Mini-Evaluations. After so long of either not meeting any goals or only meeting one or two at his evals...
TJ met ALL OF THEM!!!!! He also did some extra things! according to his teacher and caseworker most of it places TJ at the 12+ month mark. We are so friggen happy!
Thank you :) We know for sure that God wants us both here for a reason after what TJ went through after his OHS and what I came through last July with the whole pneumonia thing.
you know, Mason is a wonderful lil brother for Tyler because although he is too rough sometimes he is at that stage where he enjoys sharing with TJ and will give/offer toys and even food. Its so cute to see, I'll have to get a video of it sometime.
you know, Mason is a wonderful lil brother for Tyler because although he is too rough sometimes he is at that stage where he enjoys sharing with TJ and will give/offer toys and even food. Its so cute to see, I'll have to get a video of it sometime.
It's so wonderful to see a family come together and be supportive of each other and help out. So many times when a child comes along that has special needs it ends up tearing families apart. I'm just so happy to see one that has done the opposite....I'll change my original statement to "I'm proud of ALL of you! But especially TJ for being such a little trooper :) He has his mama's fighting instincts and determination "
Thanks everyone!!!
LosingMyMindInGA~
Well, the progress he's made is the result of a group effort. Carlos (DH) has been doing all the same things I've done with TJ and has actually put a little effort into learning some sign language. :) My MIL and my mom have helped as well and mylittle brother who's living here loves to play with the two boys. He does focus more on Mason because Mace can handle roughhousing and play but he does give TJ toys and talk to him.
blueeyedtabbycat~
I am over the moon! there's no way I can put into words how awesomely happy it's made me feel. :)
thanks to all you other ladies!
LosingMyMindInGA~
Well, the progress he's made is the result of a group effort. Carlos (DH) has been doing all the same things I've done with TJ and has actually put a little effort into learning some sign language. :) My MIL and my mom have helped as well and mylittle brother who's living here loves to play with the two boys. He does focus more on Mason because Mace can handle roughhousing and play but he does give TJ toys and talk to him.
blueeyedtabbycat~
I am over the moon! there's no way I can put into words how awesomely happy it's made me feel. :)
thanks to all you other ladies!
Wow! Go TJ!! Im so happy that he is making MAJOR progress!!! I bet your over the moon!!! Im glad I jumped on MH today and got to read this! Made my day:)
Oh this is so AWESOME. Reading your update on TJ is literally bringing tears to my eyes. I'm so happy for him!!! Boy, he is such a little fighter and you, my dear, are one heckuva Mama. I'm so proud of both of you. AFter all you have been through and you always fight and push forward. Congrats on the wonderful eval. Give TJ a HUGE hug for me :)
Thanks Joy!
I forgot to add that info and I keep forgetting that we've got so many new ladies on the site/board.
TO ADD TO MY ORIGINAL POST: (This will be LONG)
TJ is 2 1/2 YEARS old and maybe it'll help you all understand if I explain why TJ is so delayed because it's not just him having Down Syndrome.
#1 TJ was a preemie born at 35w5d due to oligohydramnios (short name is Oligo) which means he had no fluid.
------------------------------------------------
#2 TJ was born with serious heart defects. he had 2 smallish ASD, or holes between the top two chambers of the heart and a very large VSD which is a hole between the 2 lower chambers of the heart
------------------------------------------------
#3 TJ also was born with a hereditary skin condition called EHK, or Epidermolytic Hyperkeratosis. It is a form of something called Ichthyosis. Psoriasis and Excema are other more common forms of Ichthyosis but EHK is rather rare.
Babies born with it have their skin torn during birth and (THIS IS GRAPHIC!) ***Can look like they've been dipped in acid***. We make skin cells 300x faster than normal. My family has 4 generations starting with my grandmother who had the original mutation.. There is a %50 that each child I have will be born with EHK. I've got 3 brothers who don't have it and my younger son does not have it. there are 2 types of EHK, one that affects the body head to toe and and it affects the palms of the hands and soles of the feet, and one that doesn't.
****Thankfully the type that my family has is the one that does NOT affect the soles and palms.****
------------------------------------------
#4 He began dealing with failure to thrive because he started losing weight so his open heart surgery was done when he was 10 weeks old, approx. 6 weeks adjusted age.
-------------------------------------------
#5 TJ had severe complications where his body rejected the metal wires or clips that doctors use to close the sternum (chest bone). He ended up on life support for 6 weeks and spent a total of 3 months in the Pediatric Cardiac ICU. During that time his body rejected around 3 more types of closures that were made of different materials so we actually had to get his chest to heal from the inside out.
*5 continued* He came home with a still open chest wound that needed to be cleaned and packed with gauze twice a day. He needed strong IV antibiotics for 3 days so basically he was stuck laying down or reclining for about 8 or nine months of his first year. He also has a feeding tube called a Mic-Key button that he gets overnight feeds of pediasure formula pumped through. All that led to SERIOUS physical and mental delays. at first he didnt eat anything by mouth. Due to being on the ventilator he had an oral aversion and would gag when anything touched his tongue. he lost his suck reflex so couldn't drink from a bottle at all. After alot of work he ate thin stage 1 babyfood, then he ate stage 2 and if we gave him some that was too chunky he'd choke and gag. Now, 2 years after all that he can eat stage 3 babyfoods and can chew small bites of regular foods like french fries or lil bits of a burger or small chunks of banana. He can handle tiny sips of fluids but will choke so we need to begin working with an Occupational therapist.
He has mostly physical delays. He doesn't walk, stand, or crawl. He used to have to sit propped against something like the couch. 2 months ago when his teacher Wendi was here his little brother who is 6lbs heaver than he is and about 3 inches taller than TJ is was climbing on the big tupperware type storage box she keeps all her therapy toys in and TJ was watching him so Wendi decided to try and put TJ on the box to see what he would do. For the first time EVER he sat there all by himself with his back straight and everything.
Now he sits very well all the time and has begun to "Pivot" . He puts one hand between his legs and one hand out to his side and lifts himself a little and turns about 1/4 the way around. doing that he can turn around completely one way and also the other way. he also is trying to move forward into a crawl position but can't get his knees under him properly. With a tiny bit of help though he can get on his hands and knees and hold that position.
Tyler has also picked up more sign language signs. Now he signs "Mama, Milk, More, Ball, To, Dog" and a few more that I can't remember right now. A while back about 6 weeks ago he spent a weekend in the hospital for breathing treatments because he had a mild case of pneumonia. One morning I got to the hospital to see him next to the small nurses station in a high chair watching a cartoon. The nurse told me that he had signed "More food" to her when she was giving him breakfast. The night before I taught her the signs he uses, mainly "More, and Food, and Dog" So it was a huge thing to hear he had put the signs together to make a simple sentence.
I forgot to add that info and I keep forgetting that we've got so many new ladies on the site/board.
TO ADD TO MY ORIGINAL POST: (This will be LONG)
TJ is 2 1/2 YEARS old and maybe it'll help you all understand if I explain why TJ is so delayed because it's not just him having Down Syndrome.
#1 TJ was a preemie born at 35w5d due to oligohydramnios (short name is Oligo) which means he had no fluid.
------------------------------------------------
#2 TJ was born with serious heart defects. he had 2 smallish ASD, or holes between the top two chambers of the heart and a very large VSD which is a hole between the 2 lower chambers of the heart
------------------------------------------------
#3 TJ also was born with a hereditary skin condition called EHK, or Epidermolytic Hyperkeratosis. It is a form of something called Ichthyosis. Psoriasis and Excema are other more common forms of Ichthyosis but EHK is rather rare.
Babies born with it have their skin torn during birth and (THIS IS GRAPHIC!) ***Can look like they've been dipped in acid***. We make skin cells 300x faster than normal. My family has 4 generations starting with my grandmother who had the original mutation.. There is a %50 that each child I have will be born with EHK. I've got 3 brothers who don't have it and my younger son does not have it. there are 2 types of EHK, one that affects the body head to toe and and it affects the palms of the hands and soles of the feet, and one that doesn't.
****Thankfully the type that my family has is the one that does NOT affect the soles and palms.****
------------------------------------------
#4 He began dealing with failure to thrive because he started losing weight so his open heart surgery was done when he was 10 weeks old, approx. 6 weeks adjusted age.
-------------------------------------------
#5 TJ had severe complications where his body rejected the metal wires or clips that doctors use to close the sternum (chest bone). He ended up on life support for 6 weeks and spent a total of 3 months in the Pediatric Cardiac ICU. During that time his body rejected around 3 more types of closures that were made of different materials so we actually had to get his chest to heal from the inside out.
*5 continued* He came home with a still open chest wound that needed to be cleaned and packed with gauze twice a day. He needed strong IV antibiotics for 3 days so basically he was stuck laying down or reclining for about 8 or nine months of his first year. He also has a feeding tube called a Mic-Key button that he gets overnight feeds of pediasure formula pumped through. All that led to SERIOUS physical and mental delays. at first he didnt eat anything by mouth. Due to being on the ventilator he had an oral aversion and would gag when anything touched his tongue. he lost his suck reflex so couldn't drink from a bottle at all. After alot of work he ate thin stage 1 babyfood, then he ate stage 2 and if we gave him some that was too chunky he'd choke and gag. Now, 2 years after all that he can eat stage 3 babyfoods and can chew small bites of regular foods like french fries or lil bits of a burger or small chunks of banana. He can handle tiny sips of fluids but will choke so we need to begin working with an Occupational therapist.
He has mostly physical delays. He doesn't walk, stand, or crawl. He used to have to sit propped against something like the couch. 2 months ago when his teacher Wendi was here his little brother who is 6lbs heaver than he is and about 3 inches taller than TJ is was climbing on the big tupperware type storage box she keeps all her therapy toys in and TJ was watching him so Wendi decided to try and put TJ on the box to see what he would do. For the first time EVER he sat there all by himself with his back straight and everything.
Now he sits very well all the time and has begun to "Pivot" . He puts one hand between his legs and one hand out to his side and lifts himself a little and turns about 1/4 the way around. doing that he can turn around completely one way and also the other way. he also is trying to move forward into a crawl position but can't get his knees under him properly. With a tiny bit of help though he can get on his hands and knees and hold that position.
Tyler has also picked up more sign language signs. Now he signs "Mama, Milk, More, Ball, To, Dog" and a few more that I can't remember right now. A while back about 6 weeks ago he spent a weekend in the hospital for breathing treatments because he had a mild case of pneumonia. One morning I got to the hospital to see him next to the small nurses station in a high chair watching a cartoon. The nurse told me that he had signed "More food" to her when she was giving him breakfast. The night before I taught her the signs he uses, mainly "More, and Food, and Dog" So it was a huge thing to hear he had put the signs together to make a simple sentence.
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