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  • Writer's pictureHeidi Renee

Springing Forward


Regardless of the snow last week, I'm officially declaring is spring.


Last week was nothing short of gorgeous. AJ and I spent a lot of time outside in the afternoons. I left the screen door propped open so the dogs could go in and out. AJ surprised me by coming back outside, independently manipulating our two front steps all by himself. They are steep-so I was amazed. He did a lot of walking around the truck as well as up and down the driveway.


His walking is so much better. We took a kick ball outside and practiced kicking in standing. Actually, I was trying to roll the ball in his path so that as he walked he would kick the ball. It worked until the dog realized it was a ball that I was pitching at AJ. Sidenote: all balls belong to Rocky, our German Shepherd. Goof.


CI: Last week AJ's CI decided to stop working at school. Reason 8,453 we love that he's at his current school. His school staff know how to troubleshoot CIs. This time, it wasn't so simple. Since I was in the area, I buzzed over to school to check it out. The safety lock refused to budge. Once I popped that off like a champagne cork, the pin insert, which holds the processor and battery pack, refused to budge. ??? I finally got that out, swapped out the cord, and put her back together. Still didn't work.


Long story short-the backup cord I used to replace the old one, was also bad! It happens. The pin was also bent-again. We seem to be the only ones that bend pins. I called our handy-dandy Med-El rep and ordered new cords, a new pin, and a new safety lock. As I sat with his coil, processor, cord, and various other parts, I was amazed at how quickly I was taking it apart, testing, organizing the parts so they wouldn't get mixed up, etc. A year ago I was afraid to touch the thing.


The next day his CI acted up again. Not the same extent, but its still frustrating. Of course you want it to work 100% of the time. We've been keeping a close eye on it and testing it often, just to make sure its working. I've got a call into his CI audi to check with her. We might send the processor in and have him wear his backup for now.


The good thing in all of this? AJ "told" the school staff it wasn't working. He totally knows what this thing on his head does and can tell when its not "on". He kept taking it off his head. Way to go AJ! He did spend the rest of the day at school "off the air", but I'm ok with that. It was only an hour of school. He was patient, even though he was off the air, and still participated. Another reason we are glad he'll be bilateral soon. If one goes, he's still got access to sound. When he was "back on the air", he began vocalizing right away. CI's rock!


AJ's Girls: Almost 2 years ago, we put a flyer up for a "sitter job" in the student services area of a local college. We knew with AJ's disabilities and his CI equipment we wanted someone reliable. Result? Jenna and Abby. Two wonderful nursing students who have been nothing short of amazing with AJ.


They both learned sign language to aid communication with AJ, learned how to work his cochlear implant, knew what behaviors were allowed and not allowed, rolled with the punches when AJ's schedule/activities/etc. changed, and put up with our overbearing gigundo dogs. They gave me the chance to talk to adults during the day, go to my own appointments, and get things done. They gave Jer and I the chance to get a way and just be a couple for a few hours.


They love AJ and it shows. We could not have asked for better sitters. And now they are graduating. I am so incredibly sad. I told them they could not graduate. We wish them all the best and hope they enjoyed spending time with AJ as much as we enjoyed having them in our lives.


Family Support Program (FSP): We've applied for services through Wisconsin's Family Support Program. What is the Family Support Program? There is a waiting list for this program. We are hoping to receive funds to help cover some of AJ's equipment, etc. Basically, things that insurance won't pay for that come out of our pocket. We've been encouraged by several of the agencies we work with to apply for this funding, so we're doing it.


Intensives: We plan to have AJ attend the week-long intensive therapy session through Partners for Progress in October. Partners for Progress is run by the two world renowned therapists who have both treated AJ. We just received our packet, so we're putting in our availability for October, so they save a spot for AJ. If we are lucky, the FSP funds will be available then to help pay for the intensives. If not, we'll hope for it to be available next year.


IEP: As usual, we are beginning our transition from freak out mode to preparation, man your battle stations mode. This is again, unfamiliar territory. We haven't been in this position yet, where he's already been at our choice of school for a year and we are requesting for him to return for the summer and following year. We are hoping to pow-wow with his teacher and get her thoughts on things, to further help our preparation. I also need to find out who will be present at this IEP. It will be scheduled soon, which I'm sure will throw me into another freakout-temporarily.


Communication: AJ has totally got the object communication down. With everything, except the potty. His control has gotten much better in the potty department, though, let me say. He thinks its fun to go potty in public places, because they always have sinks. Fun sinks. That have soap and water to play in.


Back to the communication. He is able to use object communication when he wants his juice, milk, or to eat. To brush his teeth. He knows his coat means bye-bye and will bring it to you when he wants to go outside/go bye-bye. He has increased his leading skills. Example: Yesterday, he came into the dining room, took my hand, led me to his room, reached for the door knob, when he couldn't turn it, he took my hand and put it on the doorknob, I hand-over-hand helped him turn it (he's so close!), and he led me to his bed. Translation: Mom, I'm tired. I want to lay down. I was shocked. And proud.


I'm almost thinking of trying pictures with him, of his spoon/fork/juice box/milk carton on the fridge. I wonder what he'd do. I guess we'll find out. Now if we could only get this potty thing down. He knows the word potty now, which is awesome. We need to continue working on head nodding . I'm determined to get him to nod his head yes/no, wave hi/bye, and point to things. I think Daddy would be thrilled if he pointed at the basketball game on tv.


This week is jam-packed with appointments and events; 7 to be exact. Wish us luck!

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