Thursday, December 30, 2010
Meeting Hallie, Lea, Abby and Sharon June 2010
I will get to more updates from the past year I have not been blogging, but in June we were very blessed to be able to meet fellow 23 weeker, Hallie, and her wonderful family! Here are some pics thanks to Abby, who is great at capturing special moments!
Wednesday, December 22, 2010
Worst Blogger EVER!
Hi everyone...I know most people will probably not even see this because they have probably long stopped checking here because I haven't posted in FOREVER. Truth is, I started a new full time job, have been taking 2-3 grad classes a semester, and have been enjoying my 4 year old twins!
Things are going well. I really don't even know where to start! Edwin and I got married FINALLY on September 3rd, 2010.
Edwin Jr's walking, and now walking up and down stairs with his hand held. He is still mostly non-verbal, but understands a lot and has many word approximations and words he does say. He has assistive technology at school.
Serena is extremely verbal and does well at school. She helps another student with DS and is very caring. This is their second year of preK and they are in separate classrooms this year which is working out well for them. Serena is able to focus on herself and not worry about her brother so much.
There is so much more I'd love to say, but I can't find the words. Feels like I went too long without updating. But, here is a picture, and I will try and do a Christmas post. Happy Holidays everyone!!!!
Things are going well. I really don't even know where to start! Edwin and I got married FINALLY on September 3rd, 2010.
Edwin Jr's walking, and now walking up and down stairs with his hand held. He is still mostly non-verbal, but understands a lot and has many word approximations and words he does say. He has assistive technology at school.
Serena is extremely verbal and does well at school. She helps another student with DS and is very caring. This is their second year of preK and they are in separate classrooms this year which is working out well for them. Serena is able to focus on herself and not worry about her brother so much.
There is so much more I'd love to say, but I can't find the words. Feels like I went too long without updating. But, here is a picture, and I will try and do a Christmas post. Happy Holidays everyone!!!!
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
Wednesday, October 14, 2009
3 years old!!!
Ok, I have been soooo bad about blogging. I am working 35 hours a week, taking two graduate classes, and of course being Mommy to Serena and Edwin...thankfully I work onsite where the kids go to daycare so I get to peak in on them...but can't let them see me...then they cry and want me :(, but they are learning a lot and doing well.
They turned 3 on Sept 29th!! And I have some exciting news...
EDWIN HAS BEGUN TO WALK...INDEPENDENTLY...ALL BY HIMSELF...ALL OVER THE PLACE!!!!
It has been amazing to see him take off...he is sooo proud and we are so excited for him!
There is so much more I could write about but I am so tired. Serena is doing amazing, talking, pretending to read, doing great imaginary play, and making great friends at daycare.
We are so grateful! And aren't they GORGEOUS????
Friday, September 11, 2009
Finally an update!!!! **Edited***with pictures
I got a message today from someone who reminded me of the many people who have followed Serena and Edwin's progress over the past (almost) 3 years. It is incredibly touching to know that people who barely know me are so supportive and caring. It means so much that I can share S&E's story and people are touched by their incredible courage and fighting spirit. I realized I should probably take time to update more on how they are doing and the new things they are accomplishing everyday.
It's funny...in only a few weeks S&E will turn 3. It seems like there is no possible way that 3 years have gone by. We have been through so much in such a short period of time, and it's truly remarkable the progress they have made. There are still many hurdles, but especially around this time of year I try to focus on the positives. Although their birthday will always feel a little bittersweet to me, it is a day of celebration, and I truly cannot wait this year!
One of the most exciting things to share is Edwin is walking more and more. And not just with his walker...INDEPENDENT walking! He went from taking a few steps, to literally walking around! This includes stopping, turning, and purposely walking in a controlled way. He is also a safe walker...dropping to his knees when he loses balances as opposed to falling backward. His type of cerebral palsy (he's completely hypontonic) is relatively rare, and it was difficult for anyone to predict how he would do gross motor wise. For the longest time he couldn't sit up, couldn't crawl on his hands and knees, and certainly didn't appear like he would be able to stand or walk independently. But over the past few months, and really weeks, he has made unbelievable progress and we are extremely proud and excited about what this can mean for him as he gets older. Although he is not yet 3, and he is globally developmentally delayed, he KNOWS he wants to walk, and knows his peers and sister walk, and he wants to so badly. It is heartwarming to see him try and continue to try and now accomplishing his goal. My Christmas wish is for him to basically use independent walking as his main mode of getting around within short distances. I believe this wish will come true this year!
Some things we are addressing as he starts his Special Ed Pre-K program on the 29th is obviously related to gross motor, and also language. He is not really "talking" although he has word approximations and signs. He is making great progress in this area too, but we would like him to be able to communicate (in any form he can) well enough that he does not become frustrated, and can get his needs and wants met. We have our IEP meeting next week and I will update you all on that.
Serena is amazing. She is extremely bright, loves to "read" (she memorizes books and pretends to read), loves to be the boss, and loves to cuddle. She really looks out for her brother and let's us know what he wants even when he can't ask for it. She anticipates his needs really well and it's so cute to see her advocate for him! She looooves Dora and recently got Dora underpants but has no desire to pee in the potty even though she wants to wear them! lol.
Her greatest obstacles include her significant asthma and reactive airway and her paralyzed vocal cord which affects the volume of her voice. She also has some issues with balance and gross motor coordination which will be addressed on her IEP as well. She is unable to walk up and down stairs without assistance, but she is getting much better with practice at home and at daycare.
Apparently at daycare Serena is not talking much. She is not using her words to request games or to interact with her peers. When she does talk her voice is so quiet most people can't understand her and she seems to get embarrassed or shy when she is asked to repeat herself. She talks really well at home with her brother or with her cousins, but that's with one or two other kids. We are thinking there is a sensory component to her not using her words at daycare where things are loud and distracting. This is something that will be reveiwed more once she begins school. Hopefully with prompting and building confidence she will begin to be as talkative in the school and daycare as she is at home.
There is a lot of fear for us as parents as the fall and winter approach. This year they will be exposed to germs at school and at daycare for the first time in their lives. Prior to this they were kept home and cared for by a nurse as they were still needing oxygen last year. This year they will be "out in public" and with all the news about swine flu and other illnesses, we are expecting a rough year, which unfortunately could very likely include more hospitalizations. The kid's pulmonologist told us to expect that Serena in particular is at risk for hospitalizations for respiratory illnesses for the next 2 years! It's extremely scary when she needs help to breathe and I am hoping it won't be too bad this year for either of them when it comes to illnessness. We will all be getting flu shots and hope this may help.
So theres a quick overview of S&E. We are so excited to see them growing and doing things we really couldn't be sure they would do. To us they are miracles, and we feel so fortunate to have them. They are extremely happy and know how much they are loved and these things are most important!!
***I copy and pasted this from facebook so I neglected to tell Bloggers that Serena was in the hospital a couple of weeks ago with RSV!!! Yes, she got RSV in August! Edwin got it as well and was quite sick, but we were able to keep him out of the hospital. Serena was in the hospital for 4 days and it took 2 1/2-3 weeks for both of them to completely recover. This recent hospitalization is what worries us about this coming cold and flu season!
Now some pictures:
July
August--Serena's hospitalization
Sept- Spencer Fair
It's funny...in only a few weeks S&E will turn 3. It seems like there is no possible way that 3 years have gone by. We have been through so much in such a short period of time, and it's truly remarkable the progress they have made. There are still many hurdles, but especially around this time of year I try to focus on the positives. Although their birthday will always feel a little bittersweet to me, it is a day of celebration, and I truly cannot wait this year!
One of the most exciting things to share is Edwin is walking more and more. And not just with his walker...INDEPENDENT walking! He went from taking a few steps, to literally walking around! This includes stopping, turning, and purposely walking in a controlled way. He is also a safe walker...dropping to his knees when he loses balances as opposed to falling backward. His type of cerebral palsy (he's completely hypontonic) is relatively rare, and it was difficult for anyone to predict how he would do gross motor wise. For the longest time he couldn't sit up, couldn't crawl on his hands and knees, and certainly didn't appear like he would be able to stand or walk independently. But over the past few months, and really weeks, he has made unbelievable progress and we are extremely proud and excited about what this can mean for him as he gets older. Although he is not yet 3, and he is globally developmentally delayed, he KNOWS he wants to walk, and knows his peers and sister walk, and he wants to so badly. It is heartwarming to see him try and continue to try and now accomplishing his goal. My Christmas wish is for him to basically use independent walking as his main mode of getting around within short distances. I believe this wish will come true this year!
Some things we are addressing as he starts his Special Ed Pre-K program on the 29th is obviously related to gross motor, and also language. He is not really "talking" although he has word approximations and signs. He is making great progress in this area too, but we would like him to be able to communicate (in any form he can) well enough that he does not become frustrated, and can get his needs and wants met. We have our IEP meeting next week and I will update you all on that.
Serena is amazing. She is extremely bright, loves to "read" (she memorizes books and pretends to read), loves to be the boss, and loves to cuddle. She really looks out for her brother and let's us know what he wants even when he can't ask for it. She anticipates his needs really well and it's so cute to see her advocate for him! She looooves Dora and recently got Dora underpants but has no desire to pee in the potty even though she wants to wear them! lol.
Her greatest obstacles include her significant asthma and reactive airway and her paralyzed vocal cord which affects the volume of her voice. She also has some issues with balance and gross motor coordination which will be addressed on her IEP as well. She is unable to walk up and down stairs without assistance, but she is getting much better with practice at home and at daycare.
Apparently at daycare Serena is not talking much. She is not using her words to request games or to interact with her peers. When she does talk her voice is so quiet most people can't understand her and she seems to get embarrassed or shy when she is asked to repeat herself. She talks really well at home with her brother or with her cousins, but that's with one or two other kids. We are thinking there is a sensory component to her not using her words at daycare where things are loud and distracting. This is something that will be reveiwed more once she begins school. Hopefully with prompting and building confidence she will begin to be as talkative in the school and daycare as she is at home.
There is a lot of fear for us as parents as the fall and winter approach. This year they will be exposed to germs at school and at daycare for the first time in their lives. Prior to this they were kept home and cared for by a nurse as they were still needing oxygen last year. This year they will be "out in public" and with all the news about swine flu and other illnesses, we are expecting a rough year, which unfortunately could very likely include more hospitalizations. The kid's pulmonologist told us to expect that Serena in particular is at risk for hospitalizations for respiratory illnesses for the next 2 years! It's extremely scary when she needs help to breathe and I am hoping it won't be too bad this year for either of them when it comes to illnessness. We will all be getting flu shots and hope this may help.
So theres a quick overview of S&E. We are so excited to see them growing and doing things we really couldn't be sure they would do. To us they are miracles, and we feel so fortunate to have them. They are extremely happy and know how much they are loved and these things are most important!!
***I copy and pasted this from facebook so I neglected to tell Bloggers that Serena was in the hospital a couple of weeks ago with RSV!!! Yes, she got RSV in August! Edwin got it as well and was quite sick, but we were able to keep him out of the hospital. Serena was in the hospital for 4 days and it took 2 1/2-3 weeks for both of them to completely recover. This recent hospitalization is what worries us about this coming cold and flu season!
Now some pictures:
July
August--Serena's hospitalization
Sept- Spencer Fair
Thursday, July 16, 2009
He walks!!!
Waling over to the tv
Turns the channel on the tv, now losing his balance
Faaallling!
Back on his feet again!!!
On Monday July 13, 2009 our boy took 6-7 independent steps in his carpeted playroom. It was up there on the most joyous moments of our lives. he has repeated this several times...even holding onto the couch or his walker and continues to walk all on his own. It is truly amazing, and his ability to walk with the wlaker and steer is tremendous.
Today at daycare I see him walking downstairs in the hallways. The teacher told me that he woke up from his nap early, crawled over to his walker and tried walking around the entire classroom..only problem was all of the other kids were lying on the floor on their maps and he was trampling them!
So he got to practice around the entire building and was so proud of himself. They said he has used the walker in class all day. I think because he sees his peers walking he is much more motivated now!
Serena is doing great. She is following directions and the routine and even has friends in class that always want to play with her. She is adjusting really well, and her language is unreal. I am so incredibly amazed by her, she is developing in leaps and bounds.
I will post pictures soon!!! I also will get a video of Edwin independently walking several steps as soon as I can!
p.s. Although Edwin has AFOs and wears them...his first steps were taken with just socks on. These pics are from tonight. He has yet to walk with his AFOs, but takes steps at school with just socks or just sneakers. So hey, we are doing whatever works. And can you tell how proud of himself he is?????
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