Sunday, December 20, 2009
Tuesday, December 15, 2009
Finally an update!
I know I know...I've done it again. I have been neglecting my blog.
I have been really busy, and dare I say it, things are pretty normal around here and I don't have anything super important to update on. But for the sake of all you readers, and me when I want to look back and remember, I need to update....
First, we continue to love our home. We moved in in March and I still can't believe how blessed we are.
The kids will be getting a revamped "big kid" room for Christmas...decked out with everything Dora and Diego! It is their favorite. Serena always tells us how she has to have the Dora and Edwin wants the Diego...stickers, puzzles, toys, etc. Christmas will be a blast this year! I have already wrapped all of their gifts!
School is going ok...we are currently awaiting mediation with the Special Ed Dept because I rejected the portion of the IEP that neglected EJ a 1:1 aide. Although he is now WALKING INDEPENDENTLY!!!!, he still has issues with balance, and needs help with fine motor tasks. Additionally, he is still almost completely nonverbal, although he does have some words and word approximations and signs. His receptive language is much better than his verbal, probably due to the low tone in his mouth as a result of his cerebral palsy diagnosis. Needless to say, Edwin would do much better with the support of an aide who could reinforce language using sign, help him with his classroom art projects, insure his safety while walking in his classroom, helping to facilitate appropriate peer interaction, and helping to discourage mouthing of objects, which he still does constantly. We will have an advocate with us and are hopeful he will get the 1:1 added to his IEP. As it stands now, the classroom assistant is basically a 1:1 to Edwin, but she also helps with entire class, and there is nothing legally mandating anyone to keep their individual attention on Edwin, and this needs to change.
I also requested an assistive technology evaluation for EJ. I want to explore augmentative devices to help assist his communication. He knows what he wants, but cannot always verbalize it, and he gets frustrated at times. We have a meeting next month to discuss the results of the eval.
I am still very active in our city's Special Ed Parents Advisory Council. It is by far the most helpful thing I've done re: to their education. I know so much about Special Ed Law, and have so many people who can help me navigate through the mess that is Special Education. Most of the issues are around lack of funds, but they are not going to short change my children for the sake of money. I work and pay my taxes, and my children are entitled to a FAPE, and that's what they are going to get no matter how hard I have to fight. I encourage every parent who has a child with special education needs to join their local SpedPac..these moms are some of my closest friends and allies, and it makes life so much easier when you have fellow parents who "get it."
Another update...Edwin recently got glasses! He looks so cute and so smart in them. His eyesight is worse than mine :( and could continue to worsen over time due to ROP. He is nearsighted...I think -4 or something. He is pretty good about wearing them, but on the weekends I don't push it as much if we are on the floor playing. He wears them in school and at daycare pretty much all day.
Now on to Serena. Serena is a joy! She is soo sweet, so lovable, and she always puts a smile on my face. Her language, pretend play, and memorization skills have improved so much! She is still very shy at daycare and school, and does not always speak up for herself, but at home she talks your ear off. We are not sure exactly why she is not talking as much in other settings...can't be sure if it shyness, or something more...sensory overload? But with cues, and teacher support, she is able to answer questions, and is FINALLY saying her own name...she calls herself "Reeena". So cute!
Her balance is still not great, and she still toe walks at times, but it's nothing we can do much about unless we wanted to go the orthodic route, and honestly I don't want to do that to her right now. I suppose I probably should look into it, but she doesn't do it all the time, and I am still holding out hope that with therapy she will outgrow it.
She is still aspirating...even with a sippy cup which is very frustrating. I wonder if surgery was even worth it, but at this point we just teach her to take smaller sips and to be careful when she is drinking. Drinking out of a very small straw works the best, and we still don't give her an open cup.
Knock on wood, the little colds they got in their first fall season did not land them in the hospital like their summer colds did (S had RSV this summer and E the rhino virus...common cold). They are on Flovent 2 puffs twice a day, and maybe this is helping? All I know is I was nervous as all h*ll about sending them to school AND daycare (double kid/germ exposure) and so far so good. They did receive both H1N1 vaccinations.
Serena is starting to be a little more picky about food. She will tell me, "I don't like it Mommy." And then she will ask for cheese or a hotdog (turkey hotdogs). I try to give her more variety, and she is usually good, but I guess I am inadvertently comparing her to her brother who literally eats everything! Both like pasta, rice and beans, chicken of many sorts, hotdogs, grilled cheese, PB&J, tuna fish, hamburger, baked mac n cheese, and yogurt. They like apples, grapes, bananas, strawberries, blueberries, and sometimes broccoli. (E more than S). S is drinking juice now which is great b/c she used to only want milk or water. She is now more balanced with what she drinks on an everyday basis. They still like a bottle of milk at bedtime and I have not tried to take that away yet. It comforts them and milk does a body good, so maybe over the summer we will try and break that habit. They have been to the dentist 3 times now, and so far so good...NOT a fun experience, but they tolerate it. They also get their teeth brushed by us and then are encouraged to brush their own teeth which they like because it is a battery operated one with Dora and Diego.
I am not sure how much they weigh, but it's 30 something. They are both still very small, although Edwin is quite tall. I worry sometimes if they are gaining enough weight, especially since they have breakfast and lunch at school and daycare during the week (and a snack), so they really only have dinner and desert at home Mon-Fri, but they are good about making it known when they are hungry and the pedi isn't concerned.
Other than that things are good. My last grad class for the semester is tonight (I am getting my masters degree and licensure as a school counselor) and I am excited for a break, and especially for Christmas! This degree will enable me to have a job that works on the kid's school schedule, have summers off, and set me up for a nice retirement with benefits. Although law school meant a lot to me..this is the best decision for our family, and we do want to have more children at some point, and I believe this career is best suited for S&E's needs and for future children. I am really enjoying my classes so far and have a solid 4.0 GPA! :)
My sister and I are going to Las Vegas at the end of January for one of Edwin's fights. He is fighting on the Shane Mosely Andre Berto undercard, which is a big deal. The kids will stay with my mom, and I am excited and a little nervous to go. Edwin's record is now 13-0 with 9 KOs, and we are hopeful that the undefeated stroke continues and by this time next year he is looking at a title fight!
Well that's it for now...I will try and upload some video of Edwin walking and Serena talking soon!
I have been really busy, and dare I say it, things are pretty normal around here and I don't have anything super important to update on. But for the sake of all you readers, and me when I want to look back and remember, I need to update....
First, we continue to love our home. We moved in in March and I still can't believe how blessed we are.
The kids will be getting a revamped "big kid" room for Christmas...decked out with everything Dora and Diego! It is their favorite. Serena always tells us how she has to have the Dora and Edwin wants the Diego...stickers, puzzles, toys, etc. Christmas will be a blast this year! I have already wrapped all of their gifts!
School is going ok...we are currently awaiting mediation with the Special Ed Dept because I rejected the portion of the IEP that neglected EJ a 1:1 aide. Although he is now WALKING INDEPENDENTLY!!!!, he still has issues with balance, and needs help with fine motor tasks. Additionally, he is still almost completely nonverbal, although he does have some words and word approximations and signs. His receptive language is much better than his verbal, probably due to the low tone in his mouth as a result of his cerebral palsy diagnosis. Needless to say, Edwin would do much better with the support of an aide who could reinforce language using sign, help him with his classroom art projects, insure his safety while walking in his classroom, helping to facilitate appropriate peer interaction, and helping to discourage mouthing of objects, which he still does constantly. We will have an advocate with us and are hopeful he will get the 1:1 added to his IEP. As it stands now, the classroom assistant is basically a 1:1 to Edwin, but she also helps with entire class, and there is nothing legally mandating anyone to keep their individual attention on Edwin, and this needs to change.
I also requested an assistive technology evaluation for EJ. I want to explore augmentative devices to help assist his communication. He knows what he wants, but cannot always verbalize it, and he gets frustrated at times. We have a meeting next month to discuss the results of the eval.
I am still very active in our city's Special Ed Parents Advisory Council. It is by far the most helpful thing I've done re: to their education. I know so much about Special Ed Law, and have so many people who can help me navigate through the mess that is Special Education. Most of the issues are around lack of funds, but they are not going to short change my children for the sake of money. I work and pay my taxes, and my children are entitled to a FAPE, and that's what they are going to get no matter how hard I have to fight. I encourage every parent who has a child with special education needs to join their local SpedPac..these moms are some of my closest friends and allies, and it makes life so much easier when you have fellow parents who "get it."
Another update...Edwin recently got glasses! He looks so cute and so smart in them. His eyesight is worse than mine :( and could continue to worsen over time due to ROP. He is nearsighted...I think -4 or something. He is pretty good about wearing them, but on the weekends I don't push it as much if we are on the floor playing. He wears them in school and at daycare pretty much all day.
Now on to Serena. Serena is a joy! She is soo sweet, so lovable, and she always puts a smile on my face. Her language, pretend play, and memorization skills have improved so much! She is still very shy at daycare and school, and does not always speak up for herself, but at home she talks your ear off. We are not sure exactly why she is not talking as much in other settings...can't be sure if it shyness, or something more...sensory overload? But with cues, and teacher support, she is able to answer questions, and is FINALLY saying her own name...she calls herself "Reeena". So cute!
Her balance is still not great, and she still toe walks at times, but it's nothing we can do much about unless we wanted to go the orthodic route, and honestly I don't want to do that to her right now. I suppose I probably should look into it, but she doesn't do it all the time, and I am still holding out hope that with therapy she will outgrow it.
She is still aspirating...even with a sippy cup which is very frustrating. I wonder if surgery was even worth it, but at this point we just teach her to take smaller sips and to be careful when she is drinking. Drinking out of a very small straw works the best, and we still don't give her an open cup.
Knock on wood, the little colds they got in their first fall season did not land them in the hospital like their summer colds did (S had RSV this summer and E the rhino virus...common cold). They are on Flovent 2 puffs twice a day, and maybe this is helping? All I know is I was nervous as all h*ll about sending them to school AND daycare (double kid/germ exposure) and so far so good. They did receive both H1N1 vaccinations.
Serena is starting to be a little more picky about food. She will tell me, "I don't like it Mommy." And then she will ask for cheese or a hotdog (turkey hotdogs). I try to give her more variety, and she is usually good, but I guess I am inadvertently comparing her to her brother who literally eats everything! Both like pasta, rice and beans, chicken of many sorts, hotdogs, grilled cheese, PB&J, tuna fish, hamburger, baked mac n cheese, and yogurt. They like apples, grapes, bananas, strawberries, blueberries, and sometimes broccoli. (E more than S). S is drinking juice now which is great b/c she used to only want milk or water. She is now more balanced with what she drinks on an everyday basis. They still like a bottle of milk at bedtime and I have not tried to take that away yet. It comforts them and milk does a body good, so maybe over the summer we will try and break that habit. They have been to the dentist 3 times now, and so far so good...NOT a fun experience, but they tolerate it. They also get their teeth brushed by us and then are encouraged to brush their own teeth which they like because it is a battery operated one with Dora and Diego.
I am not sure how much they weigh, but it's 30 something. They are both still very small, although Edwin is quite tall. I worry sometimes if they are gaining enough weight, especially since they have breakfast and lunch at school and daycare during the week (and a snack), so they really only have dinner and desert at home Mon-Fri, but they are good about making it known when they are hungry and the pedi isn't concerned.
Other than that things are good. My last grad class for the semester is tonight (I am getting my masters degree and licensure as a school counselor) and I am excited for a break, and especially for Christmas! This degree will enable me to have a job that works on the kid's school schedule, have summers off, and set me up for a nice retirement with benefits. Although law school meant a lot to me..this is the best decision for our family, and we do want to have more children at some point, and I believe this career is best suited for S&E's needs and for future children. I am really enjoying my classes so far and have a solid 4.0 GPA! :)
My sister and I are going to Las Vegas at the end of January for one of Edwin's fights. He is fighting on the Shane Mosely Andre Berto undercard, which is a big deal. The kids will stay with my mom, and I am excited and a little nervous to go. Edwin's record is now 13-0 with 9 KOs, and we are hopeful that the undefeated stroke continues and by this time next year he is looking at a title fight!
Well that's it for now...I will try and upload some video of Edwin walking and Serena talking soon!
Saturday, December 5, 2009
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