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  • Writer's pictureHeidi Renee

The Jist


AJ's hyperextension of his left knee has become cause for concern. After much thought and many discussions between us, AJ's PT, and AJ's physical medicine doctor (CP doc), he will begin wearing bilateral AFOs-ankle foot orthotics. I took him in today to be measured for the AFOs. Little did I know he'd have each of his feet cast for 10 minutes to create the fiberglass cast from which they make the AFOs. His orthotist (who is THE BEST in the area) said he didn't think his smallest patient of the day would be his strongest. He kept pushing his foot against his orthotist's hand (who was trying to shape the bottom of the fiberglass tape as it dried) and was making this procedure very difficult. As we were wrapping things up, his orthotist recommended having AJ wear an AFO on his left leg but keeping his current SMO on the right foot. I told him to duke it out with our PT. We'll see what they come up with.

In the meantime, AJ is wearing a theraband around his left leg, wrapped counter-clockwise. The way he walks with it on is like night and day. The theraband will do the trick until we get his AFO(s). I'm having a hard time finding shorts in AJ's wardrobe that have belt loops to tie the band behind him. (Safety pins aren't strong enough) I'm also having a hard time being consistent in having him wear it. Sometimes it really sucks that he has to wear socks, SMOs, and shoes in hot weather. Yesterday his left foot was turned in really bad. Bad Mommy Bad Mommy! But his walking deteriorates when we don't do it-so we have to keep it up. His walking may be cute now, but won't be so cute when he's 15.

AJ saw his (well another doc in the practice) physical medicine doctor earlier this month. She was happy with his progress. No botox injections. No medications for spasticity. She is leaning more towards a specific diagnosis of hemiplegia than quadraplegia. She did request a baseline x-ray be done on AJ, checking his bones, hips, and checking for scoliosis. Now that he is 3, this is about the time baselines are done, so we have a place to refer back to as he grows. Muscles do not grow as fast as bone, so when AJ grows, he gets stiff and tight. It takes a while, given his random spasticity, for his muscles to catch up. She wrote out four prescpiptions while we were there: 1) AFOs 2) SPIO vest 3) Hand Splint 4) Baseline x-ray.

AJ's PT suggested AJ wear an abdominal support vest to connect his upper body to his lower body. Right now he has no clue these two things work together. He needs that extra input. After researching SPIO vests, insurance, etc. we decided to go an alternate route. We are searching for a gymnastics leotard that is small enough for AJ. The lycra material will give him the input he needs. It will be worn underneath his clothing. We continue to work on walking farther without assistance, walking on uneven surfaces, and climbing. We just got a new carseat for him (thanks Grandma & Grandpa Nutt) that he fits into much better. He's no longer lounging when he sits and the seat is flatter and is a bit shorter, so his legs hang properly. Plus, it sits a little higher in the car, so he loves it!

OT: AJ has been doing well with fine motor skills. He's using his left hand more and more, and bears weight on it just fine. The only concern is that when he's not actively using it, its going back into a fist position. He also refrains from using it during eating, coloring, etc. His OT suggested a soft hand splint to help keep his hand open. We will see the OT department at Children's next week for measurments. He loves to play with shaving cream, fingerpaints, anything he can smush around. He also loves table activities. It happens to be his favorite time during toddler group.

We are working on helping him dress himself. We've been doing PT/OT co-treatment sessions, which I absolutely love. Last week they had him walking on the uneven hill towards flags in the ground and placed plastic hawaiian leis around his neck so that he had to take them off. We are also working on drawing a circle shape and continue to work on "IN". He gets it, it just depends on if he thinks the toy is fun or not. Sigh.

GI: In early August, I somehow scheduled 3 appointments @ Children's all back to back in the morning hours. GI was our first appointment of the day. AJ LOST WEIGHT. And not just a little, a lot. 7 oz. He was down to 21.1# BUT got taller, at 33.1in. He grew 0.5in in just 2 weeks. But the loss was freightening. Jeremy and I had taken AJ off the Pediasure, giving him whole milk with just flavoring packets. We felt so incredibly guilty, althought it was probably a combination of less liquid calories, his typical toddler diet (some days I eat lots, some days not so much), and his constant movement now that he's mobile.

While it is fantastic he's getting taller, it makes him that much thinner on the charts. I was surprised to hear his percentage only dropped from 86% to 85% of his ideal body weight. As always, they will be happier when he's 90% or above. We have put him back on the whole milk with carnation instant breakfast. same thing as pediasure, same calories, but way cheaper. He continues to be on a high calorie diet. If anyone has a brilliant idea on how to get his vitamins into him, I'd be happy to hear it. Crushing and mixing with food only works with certain foods. Someone needs to make one in a liquid form! His GI dietician is working with our insurance company to see if we can't get Pediasure covered by insurance. Only thing: AJ is an oral eater, so they may not cover it. Oiy. You just can't win!!

Speech: AJ has made some strong gains in speech. His receptive language has definitely improved. We have moved on from the box of noisemakers etc. He now does activities at the table with his SLP. The last two weeks have been the biggest.


-Functionally played with a mailbox toy, putting the "letters" (plastic discs) into the mail slot, then opening the door to get them all out, pulled them all out, closed the door, and put them all in again.

-Heard all Lings when his SLP did them

-Took airplane and did /ah/ sound multiple times

-Took bunny and made it "hop" when his SLP said hop, hop, hop

He's hearing more and more each day. He still choses when to ignore speech though. And we've definitely seen how hard it is for him to hear in noisy environments. Even when just the TV is on. I pulled out all of the "tests" that AJ's therapy staff uses, and was surprised to see he had made gains in each area. I'll have to post that info later.

On Wednesday, I was just playing around with knocking on his tray at Great Grandma's house. He started knocking. Hm. I then thought, lets just see what he does. So I said "Knock Knock" and he knocked on his tray and looked up. We repeated this several times (a few times using my hand as a screen-some closet AVT goin' on here). He did it yesterday and this morning, so I'm pleased to say he understands the auditory cue "knock knock".

CI: AJ had another booth testing (3 month post-activation) in late July. He did well, but his audi decided to change the way the implant is firing instead of turning the volume up. He had 12 channels firing, she turned 3 of them off. This will help make the implant work faster and in turn, provide more stimulation. We will see his audi again in October for his 6 month appointment. He isn't the best booth tester, so this is where we are. He is probably somewhere in the 35-40db range as far as what he's hearing. He continues to wear the babyworn set up, with the processor pinned to his shirt. But if you want me to be honest, its driving me nuts. Not sure that we're ready for the BTE (Behind the Ear) set-up yet. We find outselves frustrated with him not hearing in the car (falls off). He's still wearing it every day, all day.

Feeding: Is back to haunt us. AJ's molars still haven't popped through. Which makes his mouth sensitive and he tends not to want to chew. Yes, my 3 year old is still teething, and no its not normal. Because AJ was so malnutritioned for the first 13 months of his life, he's behind in tooth growth. His dentist thinks by December they should be in. 2 have popped through, the other two are still just swollen. I wouldn't want to chew either. It was so bad a few weeks ago we almost put him back on baby food. He was choking on everything and mealtimes became a nightmare. We don't do regression well. He's improved, although some foods are tougher than others. Why AJ will crunch on a fruit loop or corn pop and not a graham cracker is beyond me. We've pulled out the Nuk brush, Z-vibe, and his entire oral motor therapy kit again. It seems to be helping.

SID: Sensory Intergration Dysfunction. AJ's SID has kicked in an awful lot over the last few weeks. He had a complete meltdown-like I've never seen-in toddler group last week, and then again at the end of his speech session the very next day. Of course he had the meltdown the day his future teacher came to observe! He may need a sensory diet when he begins school. More about his SID in another post.

Toddler Group/School: AJ has been doing very well in toddler group(minus the day mentioned above). We've been practicing sitting on our carpet square here at home and reading books. His sitting during circle time has really improved. The week before his meltdown he sat through both middle and end circle times like a champ. He even listened and partcipated. They had their summer swim party last week-it was so cute. They kids had a blast in the little kiddie pools, complete with circle time outside, playground time, and a fabulous ice cream dessert. He really enjoys the art projects/table time and recently discovered this stacking disc thing. Hard to explain, but when you stack it, each disc does something. AJ figured out how to stack it and undo it, and then if he had the pieces wrong, he'd take them apart and stack it properly. Holy cognition! I am sad to say his last day at CDHH toddler group will be 8/31. We've worked with CDHH for so long. :( All good things must come to an end.

AJ's new teacher has been so awesome. She's observed him here at home during OT, at speech, and at toddler group. We've been corresponding over the entire summer. We've discussed everything from a Rifton chair, to snack time/nutrition needs, to circle/reading time, to purple glue sticks. We've purchased all of his school supplies, and even found a backpack that should work for him. We have meet the teacher night next week and he'll have his first day of school on Tuesday 9/1. He'll be going to school M-Th in the mornings.

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