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Laura and Debbi Diilbeck are now friends

August 19

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June 22

Debbi Diilbeck was featured

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May 22

Debbi Diilbeck and Veronica are now friends

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Debbi Diilbeck joined Deb's group

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This group exists to make it easier to connect with other parents of children with cerebral palsy.

May 15

Debbi Diilbeck is now a member of PA Medical Home Initiative for Parents

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May 15

Comment Wall (11 comments)

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At 12:26pm on August 19, 2009, Laura said…: i will dig out the info on that, and let you know. i can't think of the fed department off hand that gave us funding for the elevator. we also got some money from Brian's Run. Have you contacted the Chesco Department of MH/MR? You can become part of a waiver program through them, and can get some money for respite, therapeutic riding (joe rides at thorncroft), equipment not paid for by insurance or M.A. and other stuff. you would be assigned a caseworker. i am not familiar with delco, if they have a dept like that there. i have to run to the peds office for some info for mediation tomorrow, but i would love to help you further-i'll send that info on the funding when i get back!

At 12:10pm on August 19, 2009, Laura said…: my boys were 6 weeks early, both were almost 5 pounds, and my daughter, was over 7 lbs at 3 weeks early, and my other son, 5 days early was 9 1/2 pounds! i figure if they all had gone to full term , they prob would have been close to 10 pounds. and neither my husband and i are large people! maria was born at riddle, joe, chesco, and peter at hup. Joe uses a wheelchair, and at school has a stander, and other chairs and stuff they have for the room. a few years ago, we did do renovations to our house, we added a room on the back, and included an elevator lift to get him to his room, expanded the bathroom to include a changing table for him. we also took half of our 2 car garage and have a ramp inside the house to get him in since there was steps into the house. i was able to get funding from non profit and govt sources for this as well as personal stuff, if you ever decide you need to do this, i can give you info

At 11:51am on August 19, 2009, Laura said…: I am glad that you are happy with CHOP! it sounds like she is doing well. joe was born at Chesco hosp, and had CHOP docs working with him when he was born. My husband and I love this story: one of the docs was from South Africa, and had a thick accent. we were, of course, concerned about him nursing and feeding, etc, cause he was so small. we would get updates from the staff about his eating, and one time this doc told us he was eating like a "chimp." my husband and i were kind of confused, couldn't really figure out what the heck did that mean? (he liked to peel bananas?!) anyway, finally, we figured out that he was saying he was eating like a "champ!" I still laugh everytime i think of that!

At 11:37am on August 19, 2009, Laura said…: i am sorry that you didn't have a good experience at dupont. it can be frustrating dealing with doctors! my son was a twin, born 6 weeeks premature, his brother was stillborn. he had a seizure at 12 hours, and came home on phenobarb, which we weaned him off after 1 yr, 3 months, because he wasn't really having seizures, and he never went back on them. he was never on a feeding tube, we went back and forth as to whether to give him one, but he eats by mouth pureed food, and eats everything, we did consider the tube just at night, but decided against it. not a decision we took lightly, and only after consulting with a nutritionist at dupont and other docs. he is small for his age, but is in proportion with weight/height. he really has no other medical issues, other than the spasticity, delays, etc. i have 2 other children, daughter, 16, and son, 11.

At 11:23am on August 19, 2009, Laura said…: i have been to both CHOP and duPont. We started at CHOP, but also went to dupont, as another opinion, then switched to duPont, because they have simolar approaches, and it was an easier ride to delaware, instead of the city, but both are great places. it is just a personal choice. we are fortunate to live close to not just one, but 2 top notch places!

At 11:05am on August 19, 2009, Laura said…: your daughter sounds wonderful! and sounds like she is very bright, and not too delayed. My son was in Lorin's class, she will remember Joe Fabiani, as well as Clare, Suzi and Anne B. I would encourage you to consider all options for your daughter when she enters a school system, including an inclusion program for her. My son is non-verbal, ( he is working with switches) and is non ambulatory, and is still in a more inclusive program than something like the CDC program

At 10:32am on August 19, 2009, Laura said…: inclusion programs can run from full inclusion (sp ed student in regular ed class with full supports-ie therapies, to inlcusion only part of the day). My son is severely delayed, we believe he is cognitively further along, but his physical person prevents him from expressing this, so a regular classroom, or life skills for him is not appropriate. I can't really say where your daughter would fit in without knowing anything more. who is your daughter's teacher at first step?

At 9:41am on August 19, 2009, Laura said…: offhand, I don't know of any in Delco, but if I hear, I will let you know. I would call the Delaware county IU, and ask them if they have any MDS programs/classes in regular ed schools. There are plenty of Life Skills classes, but they are not the same. They are academically-based, and MDS are more therapeutically-based. Not that they don't do academics, but that the kids need that therapy concentration. Let me know if you have any more questions! Your daughter is beautiful, by the way!

At 9:33am on August 19, 2009, Laura said…: Hello Debbi!
My son, Joe also went to First Step. It is an awesome program, and I loved it! MDS stands for Multiple Disabiltiy Support (don't quote me on that, but that is the general idea) It is a class for kids with multiple disabilities, and they are in a regular ed school, but it is a separate classroom. The kids get to mingle with the regular ed kids. Currrently, only 2 exist in Chesco, the one at Unionville, and the one at the high school. (Avon Grove). Both are run by the IU. He originally was in the mds class at Penn London elementary, then they closed that and moved the program to Unionville. I can certainly give you more info, i just don't want to ramble on unless you want me to! I just remember when I was looking for a class for Joe after First Step, I only found out about the program through a parent's casual comment, the school district never told me about it, because they push for the CDC for kids like my son. Please let me know if you want any more info! I would love to help!

At 8:12pm on May 15, 2009, Veronica said…: Kevin has been in First Step for about 18 months. We moved from MD to PA almost two years ago. We are going to keep him in the First Step program another year as we have not found a suitable school for him to attend in the fall. Kevin has very limited use of his arms, he is deaf and his vision is limited, he also has a feeding tube.
Kyle does no have any disabilities. He will start Jordan Bank this fall. I also have a 2 year old boy who is typical as well.
My twins were born at 32 weeks but had twin to twin transfusion, where blood is passed from one to the other.
Its great to find someone local to chat with.

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Do you live in Pennsylvania?: Yes

What PA County do you live in?: chester

(Please select all that apply) I am:: A parent or caregiver to a child or youth with special health care needs

Please share some key areas of interest in the field of child health (for example, transition, autism, special education, etc.): cerebral palsy

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