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  • Writer's pictureHeidi Renee

An Intense Blur

PT: For the last few PT sessions, AJ's left leg has been considerably tight. His PT is concerned about this, as are we. She was instantly able to tell we had a lot of family things going on over Thanksgiving weekend and didn't get as much massage in as usual. Unreal. AJ has been growing, as he is all legs right now. Even so, he's due for a HUGE growth spurt. We are not thrilled, to say the least. AJ has and will continue to have severe growing pains. It is possible he will lose the ability to walk. We knew this was a possibility, but have a different outlook on it now that it's staring us directly in the face. He continually amazes his PT by his ease of standing back up when he falls down even when his tone is kicking in.

We have a plan of action. We are....oh, what's the word. Avoiding? Maybe. I guess we'll go with that. We are avoiding intervention at this point. Meaning, we are doing what we can before turning to botox or surgery. We have increased the width of his Kinesio tape, which is working more "magic". We are massaging him, as much as possible. Even when I carry him facing forward, I'm massaging his hammies. We are also continuing the regular exercises, such as the "foot wiggle" and "runner's stretch". We have created bolsters (for him to climb over) out of round oatmeal containers and duct tape. We have made balance beams out of cardboard. We are tossing a preferred item (as bait) and having him crawl over us to get to it. WE MUST KEEP HIM MOBILE AND AMBULATORY. Don't get me wrong, it is terrifying to hear someone say "Your son may stop walking." But I am thankful that we have asked the right questions and kept ourselves in the loop regarding AJ treatment. That makes it a team effort, and a bit less scary.

AJ's CP is a tricky thing. Because his CP is mild, it can often seem non-existent to an onlooker. People often forget AJ is 3.5 years old. He doesn't move around like a typical 3-year-old. Just because he is walking, doesn't automatically mean he will continue to walk. Will Jeremy and I do everything we can to keep him mobile, absolutely. Are we confident we can do so? With the help of his PT and physical medicine doctor, absolutely. As AJ grows, this will be a constant battle. For some reason, the magic age seems to be 15, so maybe that will be his last growth spurt. PT/OT sessions are on Mondays, so I'm anxious to see what they have to say tomorrow. I think his tone has improved over the week, we shall see.

On a positive note: AJ is getting out of bed with ease and much faster. He can climb off the couch at the speed of lightning. I also witnessed him doing the "Captain Morgan" stance, with his right foot on a box and his left straight on the floor holding his body weight.

OT: AJ has been posturing A LOT lately. What is posturing? When he sits on the floor with his legs out in front of him, the left leg is slightly bent upwards, so it is not relaxed (think upside-down "V"). His left arm also seems to pull in to what I call "typical CP hand placement". I've found us using his Benek hand splint a lot more and catching his thumb resting under his fingers. Not good. We're keeping an eye on it, stretching and massaging his arms as much as possible and doing lots of fine motor (finger friendly) activities. Currently, OT's focus has been dressing. Which is going, eh, so-so. He can definitely take things off, like hats, mittens, shirt (if you bring it up to his shoulders), pants, and socks. He tries to help with his AFOs and shoes. He's getting better at "ripping" the velcro straps back on his AFOs when its time to take them off. A lot of hand over hand at this point, but he gets the concept. He's struggling with jacket skills. We've added rings or small key chains to his jackets so he can learn to pull up the zipper himself. I'm thinking about making him a felt board with snaps/velcro/zippers on it, just to practice. He still hasn't got quite enough balance to be able to pull his pull-up or pants down himself in standing position. He can get his pants off sitting down, fancy that.

AJ learned (after just 2 hand-over-hand experiences) to give his Daddy HIGH FIVE! YAY!! Bonus-he can do it with both hands. Bummer-he only does it for Daddy.

He showed he could reach his left arm (solo) above his head, straight, without his body being in a funky posture. I was amazed. He picked up corn from his corn bin and sprinkled it down on himself. With his left arm/hand! He can do it with the right too, but whatever. :) He's also starting to put puzzles pieces in (not in the right spots, but its effort) after he's taken them out. He also stacked 5 blocks on top of a tower of blocks already 8 blocks tall. And it did not fall. His reach and placement were that controlled.

Speech/CI: We have our first non-cooing sounds! AJ said "AH" and "OW" (as in ow, I cut my finger) on Wednesday during his speech session at school. Since we've heard both sounds A LOT. He was definitely playing with his voice today-just to hear himself "talk". He's also starting to move his mouth to imitate-or try imitating-your mouth movements. It's hard to explain. It's different, but at least we know its a good different!

We spent Black Friday afternoon at Urgent Care with AJ. Diagnosis: Double ear infections. He's been ripping his implant off, so this may have played a factor. Well, we know it did for a short time. Certain tones of voice, loud noises, or the dogs barking were really bothering him. Then he displayed the classic signs and we knew it was an ear infection.

He's still ripping off his implant. It's a behavior thing. He's getting a power trip from knowing if he pulls it off he gets something from it. It has decreased, so that's good. I think he only did it a few times today. Add this to the list of things we are keeping an eye on.

School: I never did write a separate post detailing AJ's IEP review meeting and parent/teacher conferences. Our IEP review meeting went well. One change was made to his IEP: AJ needs 1:1 instruction at all times. Best of all: His IEP allows him to attend his current school until June of 2010. Ironically, Jeremy and I were thrilled with this news. We were a bit concerned we'd have to meet every quarter and have the same anxiety three more times. Others in the meeting didn't seem so excited. There is no "pass" that will just allow AJ to continue attending his school. Actually, there is. It's called MOVE TO THE CITY HIS SCHOOL IS IN. At least four other kiddos and their families in the TC and AO programs at his school have moved from other school districts to make sure their child can attend this program. IT IS WELL WORTH IT.

Our parent-teacher conference was helpful. AJ's school SLP, PT, and OT were kind enough to attend our conference with AJ's teacher. We left with many strategies/ideas/activities to help bridge AJ's learning at school to home. I had to pinch myself that night though. Am I really a Mom, going to my son's first parent-teacher conference? I guess so.

AJ seems to be paying more attention to his peers. He's doing something new every day. Transitions from activity to activity have once again become difficult. We are working on strategies with the school team to make these transitions smoother again. I am so thankful his team at school is patient, kind, and understanding. Although it is hard to hear he had a bad day, it is reassuring to know that he is with a team that will wipe the slate clean and start anew the following day.

Feeding/Speech Therapy: We have another follow-up appointment next week at the GI Clinic. My stomach is already in knots. Not only just because its another weight check, but because he had ear infections, which caused a lack of regular appetite and liquid intake for a few days. I'm not going to lie, I am genuinely freaked out this time. We are waiting on the report to be written regarding the results and recommendations per his swallow study in early November. Once we receive an OK from insurance, we'll begin feeding therapy again. Currently, I'm considering buying stock in Z-Vibe batteries.

Social/Emotional/Cognitive/Language: As I mentioned above, AJ is paying more attention to his peers. He knows what walking down the hall means at school-time to go to the doors and go outside to find Mommy. He made the connection between a soft-plush vibrating turtle and Daddy's XBOX-they both have a vibration so he put the turtle on top of the XBOX. He knows the auditory cue for "sit down". He has signed "eat", "please", and "bath" (approximation sign). He is playing with his voice. His memory skills improve daily. He knows both how to wash his hands at the sink and how to wipe his hands off on a wet towel. He holds his hands up for a dry towel when you tell him "all done" with washing hands. AJ's emotional responses have become different, with more variety. He understands the auditory cue "ah ah ahhhh^hhhh" (You know, when you reach for the hot stove and your Mom would say "ah ah ahhhh^hhhh"?? That.) That amazes me, as it's not even a true "word" cue.

This time of year is always hard. It sort of hit me unexpectedly this time around though. AJ was diagnosed with bilateral profound hearing loss on 11/28/07 and cerebral palsy on 12/5/07. Two years ago, my Dad passed away shortly after that neurology appointment when we received the CP diagnosis. I found myself crying over cheeseburgers while driving AJ to school last week. You'd have to know my Dad to understand that last sentence. I wish my Dad was here to giggle at my perfectionism, tell me to keep things simple and to reassure me that everything was going to be okay. He was so good at that. That whole period in our lives is so vivid yet so out of focus. An intense blur. We all made it through, somehow, as I'm sure we'll make it through these anniversaries. Not much to celebrate per se, but certainly memorable moments in our lives.

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