6.25.14 Hug
An engineered hug still releases endorphins. Aimee and I are researching to prove this fact.
6.13.14 Kindergarten Bound
I made an error on Tuesday. Several honestly. One of them was giving Aimee a tiny taste of frosting at her graduation party. Several gagging episodes and lost meals later, we ended the night with an emergency visit from our home care company around 11pm to deliver a new suction machine (hooray!). Really hoping to get our old one fixed so that we have a back up. This is the third time we have been stranded without a machine. Not okay.
Wednesday afternoon Aimee's preschool teacher, her vision teacher, and her kindergarten teacher convened at our house for an updated IEP. Setting the required goals for Aimee is tricky. Every IEP meeting, Aimee is farther and farther behind the curve for her age. On paper, it is almost as if she is regressing. This time, her preschool teacher found a new way to evaluate her based on stages of communication abilities, rather than based on what age level of skill she has developed. We met to combine both of these evaluations together to make positive goals. Together we determined that Aimee has mastered the ability to express comfort and to express interest in other people. Our goal for this coming year is to have her master the ability to express her discomfort. She will then have completed the initial phase of communication, which is called Pre-Intentional Behavior.
We included vision goals to increase her fixating skills on both the right and left side from 10 seconds to 15 seconds, as well as, to improve her ability to track a moving object from 2 out of 5 times to 3 out of 5 times. We listed other goals, including Aimee reaching out to touch items placed in front of her and to increase her ability to hold small objects.
Aimee is paving the way for future kids in this district. They are continually saying that they wish that had known about things earlier, that if it wasn't for Aimee they would never have known. Being a smaller school district, Aimee is one of the more medically challenging kids they have experienced. It was amazing to hear the preschool teacher describe having Aimee in class as a big learning curve and then reassuring the kindergarten teacher that she will get past the nerves and soon be very comfortable with Aimee. It was reassuring to hear the kindergarten teacher insist that we include a one-on-one instructional assistant for Aimee. There will be 13 kids in the Life Skills class with 5 adult teachers/assistants.
Overall, it was a really positive transition from the 2 year old preschool class that Aimee has been in this past 3 years and on to a K-6th grade Life Skills class. We have decided to start out next year with 2 half days each week. I will go with Aimee for the first month as they learn about her and she learns about a new school.
In order to help with the adjustment period, we made an intro to Aimee booklet for her new teachers and aids. It is fun to show off Aimee's attributes and the joy that she constantly shares despite her limitations.
Wednesday afternoon Aimee's preschool teacher, her vision teacher, and her kindergarten teacher convened at our house for an updated IEP. Setting the required goals for Aimee is tricky. Every IEP meeting, Aimee is farther and farther behind the curve for her age. On paper, it is almost as if she is regressing. This time, her preschool teacher found a new way to evaluate her based on stages of communication abilities, rather than based on what age level of skill she has developed. We met to combine both of these evaluations together to make positive goals. Together we determined that Aimee has mastered the ability to express comfort and to express interest in other people. Our goal for this coming year is to have her master the ability to express her discomfort. She will then have completed the initial phase of communication, which is called Pre-Intentional Behavior.
We included vision goals to increase her fixating skills on both the right and left side from 10 seconds to 15 seconds, as well as, to improve her ability to track a moving object from 2 out of 5 times to 3 out of 5 times. We listed other goals, including Aimee reaching out to touch items placed in front of her and to increase her ability to hold small objects.
Aimee is paving the way for future kids in this district. They are continually saying that they wish that had known about things earlier, that if it wasn't for Aimee they would never have known. Being a smaller school district, Aimee is one of the more medically challenging kids they have experienced. It was amazing to hear the preschool teacher describe having Aimee in class as a big learning curve and then reassuring the kindergarten teacher that she will get past the nerves and soon be very comfortable with Aimee. It was reassuring to hear the kindergarten teacher insist that we include a one-on-one instructional assistant for Aimee. There will be 13 kids in the Life Skills class with 5 adult teachers/assistants.
Overall, it was a really positive transition from the 2 year old preschool class that Aimee has been in this past 3 years and on to a K-6th grade Life Skills class. We have decided to start out next year with 2 half days each week. I will go with Aimee for the first month as they learn about her and she learns about a new school.
In order to help with the adjustment period, we made an intro to Aimee booklet for her new teachers and aids. It is fun to show off Aimee's attributes and the joy that she constantly shares despite her limitations.
6.10.14 Preschool Graduate
Aimee graduated from preschool today.
Her teacher told me there was an end of the year party at school.
What a fun surprise when the boys and I came into the room
and it was a party just to celebrate Aimee.
All the kids in the class had cupcakes.
The teachers ordered Aimee a cap and gown, made her a diploma,
brought her flowers, a balloon, and a new pinwheel.Very sweet!
We are very proud of our little preschool graduate!
Ps. Take a look at Aimee holding onto her flower bouquet all by herself!
She is learning to grip objects that are just about that size (syringe plunger, fingers, tubing). :)
6.10.14 Day 5
First Lesson:
Aimee was tired for the last day of lessons. She was asleep when we came in, but as soon as she was on the table, she immediately connected and was alert. She began the first lesson with smooth rolling towards her left. When rolling to the right though, she was still stiff and disjointed in her movements. Naomi worked with her ribs, hips, and back. By the end of the lesson, rolling to the right was nearly as fluid as to the left.
Second Lesson:
Very contented from learning and centered through her whole body. She slept through the ending of the final lesson. A lot of learning for one week!
Since last week's lessons we have seen numerous improvements. She is consistently and quickly looking toward the right hand side. In a controlled situation (iPad on her right between 12-18" away with a black background and a large, slow moving red, yellow, white, or pink object), she is looking toward the movement within a couple of seconds and even tracking the objects if they are red or yellow. She is lifting her right arm straight up over her head. Her whole body is less rigid. She has not been grinding her teeth as aggressively. She is talking more often. Overall, she is more present and aware.
We LOVE seeing Aimee light up with connections through these lessons. We are hoping to do another week this coming September/October. It is beautiful to spend a whole week focused on her as a family and watch her come to life. Thank you to each of you who helped us make this past week a success!!
Aimee was tired for the last day of lessons. She was asleep when we came in, but as soon as she was on the table, she immediately connected and was alert. She began the first lesson with smooth rolling towards her left. When rolling to the right though, she was still stiff and disjointed in her movements. Naomi worked with her ribs, hips, and back. By the end of the lesson, rolling to the right was nearly as fluid as to the left.
Second Lesson:
Very contented from learning and centered through her whole body. She slept through the ending of the final lesson. A lot of learning for one week!
Since last week's lessons we have seen numerous improvements. She is consistently and quickly looking toward the right hand side. In a controlled situation (iPad on her right between 12-18" away with a black background and a large, slow moving red, yellow, white, or pink object), she is looking toward the movement within a couple of seconds and even tracking the objects if they are red or yellow. She is lifting her right arm straight up over her head. Her whole body is less rigid. She has not been grinding her teeth as aggressively. She is talking more often. Overall, she is more present and aware.
We LOVE seeing Aimee light up with connections through these lessons. We are hoping to do another week this coming September/October. It is beautiful to spend a whole week focused on her as a family and watch her come to life. Thank you to each of you who helped us make this past week a success!!
6.5.14 Day 3
First lesson:
Again, subdued, but attentive for the earlier lesson.
Second lesson:
Relaxed, but awake. She seems happier, more content or satisfied.
Through the day, we saw an increased range of motion through her back. Easier to move her through stretches. She raised both of her arms over her body while on her back for a longer period of time (20 seconds). She has been repeatedly talking conversationally (responding back and forth with coos) up to 12 times!
Through the night, she kept her head more centered and this morning her temperature was the same on both sides of her body. Typically a minimum of 1 degree difference, though 2 is not uncommon. More of a typical night with wakeful periods, though considering the more subdued day, not surprising.
6.6.14 Day 4
First Lesson:
Ed and I got the pleasure of a date night last night. This cute, sad little face watched us walk away.
.
High energy lesson. Worked with crossing arms to touch opposite shoulders. When Naomi moved on to work with her legs, Aimee touched her right hand to her left shoulder all by herself. 4 times! She put her hand in position on her own to push against a surface. She was holding her tongue between her teeth instead of grinding. We also saw more movement and loosening through her ribs.
Second Lesson:
Ed took pictures for the second lesson. We've been splitting all week with me taking the first and him taking the second. Here are a few shots of Aimee learning:
It's good to be away for a bit and reconnect, to remember what it is like to laugh together just the two of us.
I even got to come home and snuggle with my little sweetheart. She is wiped out from a day of hard learning!
6.4.14 Day 2
Day 2
Yesterday was a day of misadventures. Aimee and I got stuck in the parking garage for over 30 minutes waiting for a disabled elevator. All 5 of us went out for a quick walk to grab take out dinner from a close Thai restaurant, but we first got the directions wrong, then got wrong directions. In the end we walked around for over one and a half hours and weren't ever able to find our dinner. It's good to make memories to laugh at later. :)
First lesson:
Aimee was tired and subdued. She tolerated and remained attentive while on her stomach supported with pillows and soft blocks.
Second lesson:
Aimee was exuberant! She waved her arms and kicked her legs. She looked toward her right side for 20-30 seconds.
Following these lessons, she flexed her right foot flat. She also pushed against me slightly with her left forearm when I held her, almost as if to hold herself upright.
The last 2 nights she has slept solidly through the night! Sometimes this happens, but rarely 2 nights in a row. Amazing.
6.3.14 Day 1
Day 1
First lesson: Aimee immediately engaged. She knows this therapist (Naomi) and is completely comfortable with her. No sleeping, just calm attention. That in itself is miraculous. We discussed what hopes we had for Aimee this week. I love seeing her increase in her abilities to engage and explore. Naomi decided to focus on her inability to look toward the right. She can glance that way, but has difficulty keeping her head that direction. She also continually hangs her head down on her left side when in her chair.
Second lesson: Despite our goal of keeping things slow and not pushing too hard so that Aimee would remain engaged, she already showed great progress. During this lesson, her right leg was posted up with foot planted in line with her hip for about 15 minutes. Huge improvement from the beginning of the first lesson where it was posted 2-3 inches out for about 1 minute. She also looked toward where Naomi sat on her right hand side for a prolonged period. And she initiated pushing two times against surface with her right hand.
After the lessons Aimee was quite talkative and happily tired. Love seeing this girl light up with learning!
6.2.14 ABM Intensive
Aimee is waking up this morning in Bellevue. We're all settled in an apartment where we will be staying until Saturday for Aimee's 10 lesson intensive. This would not be happening without the many giving, loving people who participated in the Tshirt fundraiser. We're all really excited, especially Aimee. Once again, she absolutely knows.
I will be posting each night after her two lessons any changes we notice. :) What a beautiful week to focus on this beautiful girl!
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