So I received a phone call yesterday that my genetics testing came back negative!! So this means that Brooklynn just had a random mutation that started with her. Which means we do not have to worry that Izzy has this mutation (unless we have the worst luck ever and both of our children have the mutation that 1 in 200,000 people have). And this means that Sam and I can seriously start talking about whether we want to have more children. Izzy keeps asking for a baby brother (she says she would be okay with a sister), and we wanted to have one more (if not 2 more) children. So now we have to weigh the risk of me carrying another child (possibility of preterm labor again, me having to get weekly injections, possibly having weekly-monthly ultrasounds to follow my cervix, possibility of being on bedrest, etc). Hoping that those issues will be obsolete since we have had a lot longer time between children (I got pregnant with Brooklynn less than 2 years after having Izzy). So we will see what life throws at us next.
And now we can truly start processing our situation. We know now that Brooklynn will be the only one at this time who needs yearly exams and testing. Poor Brooklynn - but I know she is one tough cookie. She is so calm, relaxed, and easy going that I know she is going to be strong enough to handle all the crappy things she has to endure. Now I just have to be able to be strong enough on those times she might not feel like she can.
Tuesday, February 26, 2013
Monday, February 18, 2013
Newest research article
This is for my own reference. Mom I would not recommend you read this article.... It is a little intense and a lot of medical jargon but has new recommendations for screenings...
http://jmg.bmj.com/content/early/2013/01/17/jmedgenet-2012-101339.full
http://jmg.bmj.com/content/early/2013/01/17/jmedgenet-2012-101339.full
Wednesday, February 13, 2013
IEP Meeting and Orthotics
We picked up Brooklynn's "hotdog" inserts for her shoes today - and so far she is not even noticing a difference with them in her shoes! So hopefully this will help with her flat feet and her slight hypotonia in her lower legs.
Today we also had Brooklynn's very first IEP meeting. It lasted a lot longer than I expected. In the meeting was the Early Childhood Center Coordinator, the Special Educator Case Manager, the speech therapist, the Physical therapist, and me. We reviewed all of the concerns that were brought up in the evaluation meeting, and than discussed the Goals. These Goals were mostly put together by the case manager, based on our evaluation meeting. I am going to put them down here, just so that I have a record of these goals, but feel free to skip over them if you have no interest in them (they are after all the other journaling for today).
So after we reviewed the goals, we talked about the plan of action. Speech feels like she would benefit from 90 minutes of speech (which is up from 60 we are getting from FirstSteps!). The state allows a total of 720 minutes of special education services. So here is where we found out if she would be in the preschool or special education section of the school. They determined that due to her issues with socialization, interaction, speech, ability to transition, etc, they felt like she would benefit from being the SPECIAL EDUCATION classroom, 4 days a week, 3 hour days. So we will be pulling her out of Hilltop Preschool and putting her into Early Childhood Center as of 3/7 (the day after she turns 3 years of age).
This is where I tear up a little (not really but it's a hard one for me). I know this is what she needs. But I also know that she is doing AMAZING and making so much progress with her teacher Miss Cori and Miss Jennifer at Hilltop. But the problem is that she is doing so much better with THEM (such as allowing them to ease her out of transitions, work with them on art projects, etc), but she is still having a lot of problem with associating and interacting with her peers. She is definitely awkward around children (or just completely ignore them) unless they are her family that she sees all the time. You put her next to an adult, and she is the friendliest person in the world! She says hi to every adult that walks by.
We also found out that we will be allotted however many hours she needs during these school days for an individual to work with her (such as a para) during times when she has the most trouble (so if she needs 1:1 attention during recess, during circle time, etc, they will have someone available to help assist her). She will have occupational and physical therapist who will be consulted as needed, and if we need to initiate services with them, we can.
So we are going to get the full throttle assistance through the school district. Now I don't feel so bad paying all those Liberty taxes :) Because we will definitely be utilizating a lot of these services.
Goal 1. To increase adaptive behavior skills Brooklynn will distinguish betwen food and non-food items, clean up when asked, and correctly answer 'yes' or 'no' when asked if she needs to use the bathroom on 90% of opportunities for 3 data days.
a. Will tell if an item is "food" or 'not food' when presented with pictures or real life items on 9/10 opportunties for 3 data days
b. Will clean up (toys, snack, etc) when asked with one or less prompt on 90% of opportunities for 3 data days.
c. Will correctly answer 'yes' or 'no' when asked if she is wet or dirty on 90% of opportunities for 3 data days.
Goal 2: To increase social skills Brooklynn will initiate greetings/closings with familiar peers and adults, stated her name when asked, and appropriately communicate negative emotions on 90% of opportunities for 3 data days.
a. Initiate greetings/closings with familiar peers and adults with one or less prompt
b. State her name when asked
c. Appropriately communicate anger and sadness by using her words rather than screaming or tantruming
Goal 3: To increase play skills Brooklynn will demonstrate parallel play and request needed items in play on 4/5 opportunities for 3 data days.
Goal 4: To increase pre-academic skills, Brooklynn will match and sort by shape and color, identify objects by their use, and following directions related to learning activity with 90% accuracy for 3 data days.
a. Match by shape and color when requested
b. Sort items by shape and color
c. Identify 50 items by their use
Goal 5: Increase pre-academic skills Brooklynn will demonstrate attention to a learning task by looking towards the teacher or participating in the activity for 5 consecutive minutes for 3 data days.
a. Follow a direction related toa learning activity.
They will also add something about compliance
Goal 6: Speech and Language - Brooklynn will improve expressive language skills by using 3-4 word novel utterances in different word combination structures to express a variety of pragmatic functions, such as requesting, commenting, answering questions, gaining attention, negation in 8/10 opportunities in 3/4 data collectiond ays.
Brooklynn will improve receptive language skills by following a variety of 1-2 step directions containing spatial concepts; identify objects or pictures objects when given a description (function, feature, class); demonstrate comprehension of age level pronouns with 80% accuracy in 3/4 data collection days.
Brooklynn will increase overall intelligibility by producing age appropriate sounds at the elicit level with 80% intelligibility to an untrained listener.
a. Brooklynn will produce initial, final, and medical consonants at the elicited level.
Today we also had Brooklynn's very first IEP meeting. It lasted a lot longer than I expected. In the meeting was the Early Childhood Center Coordinator, the Special Educator Case Manager, the speech therapist, the Physical therapist, and me. We reviewed all of the concerns that were brought up in the evaluation meeting, and than discussed the Goals. These Goals were mostly put together by the case manager, based on our evaluation meeting. I am going to put them down here, just so that I have a record of these goals, but feel free to skip over them if you have no interest in them (they are after all the other journaling for today).
So after we reviewed the goals, we talked about the plan of action. Speech feels like she would benefit from 90 minutes of speech (which is up from 60 we are getting from FirstSteps!). The state allows a total of 720 minutes of special education services. So here is where we found out if she would be in the preschool or special education section of the school. They determined that due to her issues with socialization, interaction, speech, ability to transition, etc, they felt like she would benefit from being the SPECIAL EDUCATION classroom, 4 days a week, 3 hour days. So we will be pulling her out of Hilltop Preschool and putting her into Early Childhood Center as of 3/7 (the day after she turns 3 years of age).
This is where I tear up a little (not really but it's a hard one for me). I know this is what she needs. But I also know that she is doing AMAZING and making so much progress with her teacher Miss Cori and Miss Jennifer at Hilltop. But the problem is that she is doing so much better with THEM (such as allowing them to ease her out of transitions, work with them on art projects, etc), but she is still having a lot of problem with associating and interacting with her peers. She is definitely awkward around children (or just completely ignore them) unless they are her family that she sees all the time. You put her next to an adult, and she is the friendliest person in the world! She says hi to every adult that walks by.
We also found out that we will be allotted however many hours she needs during these school days for an individual to work with her (such as a para) during times when she has the most trouble (so if she needs 1:1 attention during recess, during circle time, etc, they will have someone available to help assist her). She will have occupational and physical therapist who will be consulted as needed, and if we need to initiate services with them, we can.
So we are going to get the full throttle assistance through the school district. Now I don't feel so bad paying all those Liberty taxes :) Because we will definitely be utilizating a lot of these services.
Goal 1. To increase adaptive behavior skills Brooklynn will distinguish betwen food and non-food items, clean up when asked, and correctly answer 'yes' or 'no' when asked if she needs to use the bathroom on 90% of opportunities for 3 data days.
a. Will tell if an item is "food" or 'not food' when presented with pictures or real life items on 9/10 opportunties for 3 data days
b. Will clean up (toys, snack, etc) when asked with one or less prompt on 90% of opportunities for 3 data days.
c. Will correctly answer 'yes' or 'no' when asked if she is wet or dirty on 90% of opportunities for 3 data days.
Goal 2: To increase social skills Brooklynn will initiate greetings/closings with familiar peers and adults, stated her name when asked, and appropriately communicate negative emotions on 90% of opportunities for 3 data days.
a. Initiate greetings/closings with familiar peers and adults with one or less prompt
b. State her name when asked
c. Appropriately communicate anger and sadness by using her words rather than screaming or tantruming
Goal 3: To increase play skills Brooklynn will demonstrate parallel play and request needed items in play on 4/5 opportunities for 3 data days.
Goal 4: To increase pre-academic skills, Brooklynn will match and sort by shape and color, identify objects by their use, and following directions related to learning activity with 90% accuracy for 3 data days.
a. Match by shape and color when requested
b. Sort items by shape and color
c. Identify 50 items by their use
Goal 5: Increase pre-academic skills Brooklynn will demonstrate attention to a learning task by looking towards the teacher or participating in the activity for 5 consecutive minutes for 3 data days.
a. Follow a direction related toa learning activity.
They will also add something about compliance
Goal 6: Speech and Language - Brooklynn will improve expressive language skills by using 3-4 word novel utterances in different word combination structures to express a variety of pragmatic functions, such as requesting, commenting, answering questions, gaining attention, negation in 8/10 opportunities in 3/4 data collectiond ays.
Brooklynn will improve receptive language skills by following a variety of 1-2 step directions containing spatial concepts; identify objects or pictures objects when given a description (function, feature, class); demonstrate comprehension of age level pronouns with 80% accuracy in 3/4 data collection days.
Brooklynn will increase overall intelligibility by producing age appropriate sounds at the elicit level with 80% intelligibility to an untrained listener.
a. Brooklynn will produce initial, final, and medical consonants at the elicited level.
Tuesday, February 5, 2013
Hurdle jumping
Tomorrow is a big day. We have Brooklynns neurosurgery appointment and brain MRI. This is to follow up her mild ventriculomegaly. But this time my nerves are a little more because now we have a new diagnosis. We have a diagnosis that goes along with tumors. And so that adds a whole new level of being scared. So tomorrow I am praying that growths are not seen on her scan. And I am curious to see hat Dr. H says about follow up now that we have an explanation for her enlarged head. I am hoping we will be cleared from this specialist but I am afraid.
So tomorrow we will be jumping over one more hurdle. The problem is that I feel like we are on a track with hurdles all the way around. So when we get over one there is another one right around the corner. I just pray that we will clear the hurdle. That there is not something that pops up that we are not expecting. But I know this is our life from here on out. I will never be able to relax with any appointment. I will be fearful with every test or every scan that something will pop up out of no where.
And we will get over this hurdle and we will have another coming next week with our IEP meeting. And than next month is her developmental appointment. So one hurdle (or day at a time) seems to be getting a little harder knowing that there seems to be no end of appointments, specialists, and testing. Deep breath.
So tomorrow we will be jumping over one more hurdle. The problem is that I feel like we are on a track with hurdles all the way around. So when we get over one there is another one right around the corner. I just pray that we will clear the hurdle. That there is not something that pops up that we are not expecting. But I know this is our life from here on out. I will never be able to relax with any appointment. I will be fearful with every test or every scan that something will pop up out of no where.
And we will get over this hurdle and we will have another coming next week with our IEP meeting. And than next month is her developmental appointment. So one hurdle (or day at a time) seems to be getting a little harder knowing that there seems to be no end of appointments, specialists, and testing. Deep breath.
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