Every single time I am out with Aimee and Caleb there is at least one person who watches us for a moment, raises their eyebrows, and says, "You have your hands full". Sure I am carrying Caleb and the diaper bag while pushing Aimee in the chair (which thankfully carries the suction machine, feeding bag, keys, and water bottles). My hands are literally full and I'm not going to lie, it is overwhelming. Particularly when a nurse or doctor want Aimee out of the chair and just watch me try to figure out how to do it all safely. In the end though, when a bystander makes that statement, I say, "full of joy". It helps me to remember that I can choose to see my hands as full of stress or full of blessing. I take a deep breath, thank God for the grace to figure it out, and go forward choosing to enjoy my sweeties.
One of these big stresses is putting Aimee to work. Everyday she is supposed to do the following exercises:
- Vision therapy with light box 20-30 minutes
- Vision therapy with blackboard/flashlights 20-30 minutes
- Hip work in stander with or without tray 30 minutes
- Tummy time on wedge with and without arm braces 15-25 minutes
- Work with communication buttons, asking for 'more' and 'all done'
- Work with activating head, hand, and foot switches throughout the day on wedge, in chair, or sitting in tumble form
- Mouth and tongue exercises 5-10 minutes twice per day
- Kneeling at couch or against peanut 10-15 minutes
- Sensory activity with rice and beans, shaving cream, sand, ect
Some of these activities are fun and enjoyable for Aimee. Some of them are hard work. Some of them she (and I) really dislike.
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| Aimee in stander with tray |
A couple of weeks ago, I took Aimee to Seattle Sensory Education, the local ABM therapist, for a consultation and lesson. The whole experience was very comfortable. Aimee was awake and engaged. The therapist really seemed to understand that she needed time to adjust. We laid Aimee on a table, similar to a massage table. She stayed on her back through the whole appointment, as this is the most comfortable position for her. Unlike so many therapists and doctors we have seen, there were no attempts to force her to stay awake. No jerking and wiggling her to try and get her attention. It was very peaceful.
Given the severity of Aimee's needs and the complete difference in mindset of this method, we have decided to take Aimee down to the therapy center in San Rafael, Ca for one intensive week of lessons. We applied to the center and were approved for 10 lessons in the first week of August. I felt that the summer break would be the ideal time to test out this method for Aimee. If we feel that this will be an improvement for her, we can then face the school district and hospital to rethink the current required exercises. If necessary, we will take her out of school or refuse therapy.
This might seem extreme, but given all the time and stress that our current attempts require of Aimee, we feel that we have to try another way. We definitely want to help her reach her full potential and know that this will require work. We have seen some progress over the past couple years, so I don't mean to discredit the traditional therapy methods. However, we haven't seen enough progress to justify her whole life being filled with stressful days.
Please support us with prayer as we continue forward. If you feel led to, we do also need financial support. The lessons at the center will be $2,000 for all 10 lessons. We will also have expenses for hotel, travel, and food, as well as, for Ed taking off an unpaid week from work. God has always provided for our needs and we know He will continue to do so.
