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  • Writer's pictureHeidi Renee


Updated: Jul 19, 2020

Woah! I just noticed AJ is 7 months post-activation.

While I think it is safe to say things have been certifiably insane around here, I thought I should at least check-in and let everyone know we're still here. Here's a tiny peek at what's been going on:

PT/OT: AJ started turning in his left foot again last weekend. It has progressively gotten worse. Along with his PT, we've decided to continue taping him with Kinesio tape on a regular basis. He wears the tape wrapped under his foot, up the side of his calf on both feet. He's also wearing the tape in an "upside down V" configuration just above his tush.

It can be worn for 3-4 days and is water-resistant. We've been having him wear his de-rotation straps at home. They are a pain. Let me rephrase...a royal pain in the rumpus. We much prefer the tape. His straps do keep him in great alignment though. We've also seen a whole lot less of AJ standing without putting pressure on his left foot/leg, which often happens when he's super tight.

We are all convinced he is growing again and has been since last weekend. He's TIGHT and has no idea where his body is. His eating patterns have changed and his sleeping patterns are varied. His habit and need for oral stimulation has increased dramatically. He's been "biting" or rather pushing his jaw into your shoulder and biting the fabric of your clothes. I've put a new battery in his z-vibe. His PT did craniosacral therapy on him on Monday which helped a bit, but he wasn't really into it as much as he usually is. Something just isn't right. I'm calling it a "system malfunction". So we're going with growing at the moment. His PT reassured me by saying he's still doing fantastically well and that its amazing he can keep walking while he's growing. A lot of CP kiddos get so tight they can't.

He stacked blocks during OT this week, just on a whim. Multiple times. Who is this kid?! He also picked up a block and a shoelace (it was a beading set of blocks with a shoelace to string the block beads) and looked at us as if to say "Now what do I do with them?" School reported that he played with Duplo blocks and nested cups inside each other. His left-hand use has been a bit less with this his whole "system malfunction", so I'm finding myself putting on his hand brace more often. It certainly does the job. Someday I'll get a picture of him in it.

Nothing, I mean NOTHING is working to keep this kid from sucking his thumb. It had decreased, quite a bit, until this past week. We've tried EVERYTHING. He's ridiculously smart, knowing he takes 3 licks and the deterrent we've put on his thumb is off (ie nail polish remover). I stuck my finger in his mouth and figured out his bottom right gums are swollen. More teething. Fantastic. Perhaps that's another reason he's Super Thumb Sucker these days.

CI: AJ is consistently turning to his name. NEVER THOUGHT I'D SAY THAT. He heard Christmas music at Great-Grandma's house the other day for the first time. That was the first of amazing CI Holiday Moments. He's also ripping his CI off every chance he gets. It's his way of protesting an activity if he wants something, and it's really annoying. He's been doing it at school as well. Yesterday they had to take off the toupee tape I put on in the AM before school and replace it-it had lost its "stick" since he had ripped it off so many times. I have found that the faster I get it back on him and continue talking/redirect his attention, it's better. If he's crying and won't stop, I just ignore him until he settles, then he gets my attention. He's responding to novel and environmental sounds much quicker. He heard the dogs back the other day and turned to the door, so he's making that connection. Dogs bark = doorbell. We lost our first coil a few weeks ago. A replacement coil request was submitted to insurance, but it takes 30-60 days. Needless to say, I've become a hawk in watching where his implant is when he has it on since he's wearing the "back-up" coil as his primary now.

Speech/Language: AJ's vocalizations are changing. He's yelling and squealing more, which is a good thing. We've got all kinds of new activities to help him increase his vocalizations. We think he's doing the sign for "eat" and beginning to raise his arms for "Bye-Bye" and "All Done". It's hard to tell. I know that sounds crazy, but with AJ, it is. I need to hit up the dollar store for more small flashlights. We use them for turn-taking vocal play.

School: We've had a busy week with school. We had our monthly "3rd Monday of the Month" home visit from AJ's teacher, AJ's IEP 1st Quarter Review Meeting, and Parent-Teacher Conferences. I will cover these meetings in detail in another post.

Feeding/GI: AJ's swallow study was done last week. Talk about cool. We were done in two minutes, I swear. The rest of the time was spent reviewing and watching the study. He is NOT aspirating. YAY! We do need to keep certain textures of food small to prevent choking. We will also be rounding out his meals a bit more: A solid, a softer texture, and his liquid. He drinks really fast, which I guess is a trait for kids that have oral-motor issues. Its easier to chug. He did do his "head back" thing when he eats, but then he also showed us a few awesome chin tucks while drinking. So we know he can do it. The SLP who conducted the swallow study mentioned that her report would support continued feeding therapy for safety issues. Apparently, when insurance looks at the report and sees safety, it's not a problem. So, we should be hearing soon if our PA (Prior-Authorization) came through and then pick back up with feeding therapy.

He's been trying new foods and loving them. He's never liked bread, but suddenly likes to eat peanut butter and jelly and ham and cheese sandwiches. And, obviously, from our previous post, he's drinking out of a straw. Oh, and I forgot to mention that she suggested I get trained to do the Heimlich maneuver. So, two more things on my to-do list, get CPR, and Heimlich maneuver training.

Photos: I'm taking the external hard drive to a repair place today. The disc that is retrieving files from the desktop, well its working, just a little too well. The first scan I did it pulled up over 33,000 files. When am I going to have time to go through 33,000 files? So, I'm still working on it. Hopefully, they can recover them off the external hard drive.

Jeremy: Daddy is busy with work and school. He's excited about his upcoming math course (apparently the class he's taking now is annoying) and his trip to Philly next week. He was on a local radio station last week doing an interview about diabetes. I video'ed some of it off of the laptop, someday I'll get around to posting it. He did an awesome job though!

Heidi: Mommy is busy with AJ. A few other CI Mom's and I formed a CI Mom Group. Our first meeting/gathering is tonight and I am super excited. I've discovered yoga. Which has discovered many unused muscles in my body but also done wonders for how I'm feeling day to day. I've also become obsessed with Twilight. Yes, I finally joined the bandwagon. So when I'm not thinking of strategies and appointments for AJ, I'm dreaming of beautiful vampires. Its an even trade I think.

Sunny: Our sweet goofy yellow lab/Great Dane mix. He's busy eating, sleeping, and parading around with his beloved Handy Manny doll that he stole from AJ's toy bin. I've never seen him covet anything like his Handy Manny. He's such a bird dog. Always something in his mouth. He's also been busy reminding me of why I want a 1) smaller yard 2) a fenced in yard. Last night he came in covered in mud up to his chest-15 minutes before I had to leave the house. I guess he wanted to take a bath and that was his way of telling me.

Rocky: Our loyal german shepherd. He's busy jonesin' to play frisbee outside and jump around like a jackalope. He also enjoys his daily naps, upside-down, spooning the bottom of the chaise. Yep, killer dog. NOT. He thinks pretzels are the best snack ever and if you have some, he should have some too. AJ is his kiddo. He's always checking on him and greeting him with a smooch when we come home. He's also quite attached to my Mom lately. Last night he was serenading her when she walked in the door. Oy.

Sugar and Marvin: Are cats. They sleep. All the time. End of story.

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