PT: We switched up AJ's kinescio taping. We were taping from the inside of his foot, around the bottom, up the side, almost to the knee, on both legs. We were also taping an "upside-down V" above his tush running diagnonally down the top of his tush to the sides of his thighs.
Sometimes his AFOs and shoes get wet when we don't get to the potty in time. More than once I have picked him up at school with just socks on. I mean, clothes and socks. Meaning no AFOs or shoes. Just to clarify. By the time I'd get home, AJ would have his socks off (which was a given) AS WELL as the kinescio tape. He also started pulling the tape on his thighs while sitting on the potty. Seeing as the stuff is $18/roll and we use a roll in about 2 weeks if I really stretch it out, this was a big.BIG.problem.
We've been taping him using one long continuous piece-12 squares worth. The tape comes with a background (white non-stick paper) that has lines/squares marked. That way I know exactly how much I need each time he needs to be retaped. We tape from just over the right shoulder, diagonally across his back down to his tush (creating 1/2 of the original "V") on the left side, and wrapped around his left leg, ending just below the back of his knee. It seems to be working well. We took a break from taping for about a week, as AJ had scratched himself pretty good where the tape started at his right shoulder. We gave it time to breath and heal with the help of some triple antiobiotic ointment.
AJ continues to LOVE the treadmill at the clinic.
We continue to work on balance, stairs, kicking a ball, and jumping. He's able to get off and on his bed without a step-stool and climb up and down the 2-step stepstool. He can squat and pick things up better than Jer and I can sometimes. AJ can walk the entire length of the hallway from his classroom to the front doors of his school, out the door, and up the 6 long stairs up the hill to street. One of these days I need to remember my camera and video him.
The only concern we have at the moment is his "cute" floppiness. The kid knows he's cute. Often, when you are walking with him, holding one hand, he'll noodle. And you're left holding him like a corkscrew. Its really not safe. He knows you'll hang on to him. This is a concern and also dangerous since he things its "funny". He's taken a good number of spills in recent weeks. He must learn to hold his own body weight functionally.
OT: We have increased AJ's constraint therapy to 1 1/2 hours a day. I'm so thankful he doesn't mind it. We've had a few questions regarding his constraint therapy....
We do this at home ONLY. We bought the cast outright instead of submitting to insurance and waiting for denial. Getting online, going to Sammon Preston, clicking "add to cart" and the cast arriving on my doorstep was much easier. We call it his "Bubble Arm" but its really called a Urias Pressure Splint. We ordered a child size-16 inches-so he has plenty of room to grow into it. It was $56 + shipping. Note: You need a Rx (prescription) in order to do constraint therapy!!!!
His fine-motor skills have improved dramatically. Occassionally he'll use his right hand only to grab and hold his juice box, just because he's a kid and thats what kids do. But overall, he's using his left side spontaneously and crossing midline (reaching across to his right to grab something with his left hand). Crossing midline is just as exciting as when AJ came to midline!
The other day he put the cap back on the Tylenol bottle. I was amazed he just knew where it went, and then when it set it on top, I was shocked. Dare I start probing him to see if he can match things that go together? AJ is also bearing weight on his left side while side-sitting and is actually using his left hand to help him climb onto things, rather than tucking it under his body and only using his right arm.
Physical Medicine Follow-Up {CP Doctor}: AJ saw his CP doctor at the beginning of february. Usually AJ's PT comes along so we get the "professional courtesy" of not waiting a good 2 hours to see her. This happens even when there isn't anyone in the waiting room. Boggles my mind. Anyhow, his PT couldn't make it so I was prepared with snacks, toys, activities, galore. The time from the waiting room to the exam room is quick, but the time in the room can be plain ridiculous. Especially with an ancy 3 1/2 year old.
We only had to wait a half hour! I was so excited. I was shocked and humbled by the nurse placing us in a room with a regular exam table. It wasn't the usual room with the therapy table (I call it the bed). It was a gentle reminder that my little man is indeed, mobile. He CAN move his body. He CAN walk.
AJ and I sorted sssssocks and sssssnakes on the floor while we waited. I even got the chance to educate the nurse on cochlear implant. She was very interested and I was happy to oblige. His CP doctor was very impressed with how he's doing. She gave us the prescription for constraint therapy and said no to botox. Yes, I said botox. How does botox work in patients with cerebral palsy? Given in small doses, the botox relaxes the muscles and reduces stiffness. Less rigidity, less spasticity. Botox treatment in CP patients is still controversial. Sounds like CIs in the world of hearing loss, hey? AJ has enough rotation in his foot that he doesn't need botox right now. We'll revisit the idea in July at his next follow-up.
The concern is his left foot and how it continues to turn in. She watched him walk barefoot multiple times and noted that it doesn't turn in all the time. I thought that was interesting. It turns in, then straight, in, then straight. She suggested continuing taping (as long as its working), continuing the exercises and deep massage, and showed me where to watch for stiffness in his foot. We finally heard the results of his baseline x-rays, done last fall. Results were normal. Whew. Hips, pelvis, and all that jazz were just fine.
We discussed speech therapy, she was shocked he wasn't in therapy outside of school. She saw no reason for us not to approach insurance with the need for speech therapy for medical reasons, not the whole hearing/listening/speaking component. I shared "the news" with her (see "the news" below in CI subject header), to which she wrote me a prescription for speech therapy 4-5 times per week for the summer. *Smile*
Neurology Follow-Up: Fantastic! AJ is progressing nicely. His neuro was not concerned about his development, he thought he was doing phenomonally well given all that he has overcome. So as far as development is concerned: Poop on you Mr. Development Specialist who only sees my kid once a year. He also was shocked AJ was not in speech outside of school Ugh!!!!!!! Frustration continues to build. Can you tell? He made sure to write in his report that AJ should be receiving speech for medical reasons.
AJ's head grew, which means his brain is growing appropriately. This is always our biggest concern at the neuro. AJ also weighed in at 23 lbs 6 oz, which thrilled me. I know what I say about different scales, but I'll take it! All in all it was a great visit. We got another free pass to come back in a year.
CI 9-month Follow-Up: His CI Audi did an ESRT (Electrical Stimulus Response Test) instead of regular audiogram. The ESRT consisted of a small probe (like the ones they use with tympanometers to do tympanograms on those with hearing loss). The probe was connected by wires to a cuff that his audi wore around her arm. The wires continued from the cuff to the machine his other audi was running. The point of the cuff is to keep the wires as still as possible. Each time the probe was placed properly and the test was running as is should, the light would be green. If he moved or the probe came out just a slight bit, it would flash orange.
Movement screws up the results. Fanstastic for a 3 1/2 year old. Who doesn't like movies. And doesn't have patience for toys that don't work or a lack of bubble juice. Moving on.... All in all he did do very well. They were hoping to test 2 of his electrodes, they got 7! The ESRT gives them a better idea of where AJ's sound threshholds are, since he's not the greatest booth tester. He was given a new map, which he needs to try out for at least a month. It's working like a charm!
And "the news" is: AJ is getting his 2nd cochlear implant. His left ear testing is coming up soon and we'll meet his surgeon at the end of next month. I'm still sad his original ENT/Surgeon isn't with CHW anymore. *Sniff Sniff*
If things move as they should, he should have his implant surgery this summer. We are pretty sure AJ's primary insurance will cover (as I've already spoken to them about it multiple times), but unsure about T19. They haven't been responding to CHW very quickly. That's ok. If we need to, we'll fight 'em till we win-again.
T19/Medicaid: We were still waiting on the PA for the speech that was ordered following his swallow study. Yeah. Needless to say the PA request was cancelled as we are moving in a different direction (see speech subject header below). We also received our yearly packet of forms for his state insurance. This year requires a home visit. Which doesn't really make me nervous, as I know he'll qualify, but I still have this pit in the bottom of my stomach about it. Having T19 as AJ's secondary insurance has been such a blessing, the paperwork is beyond worth it.
School: I don't know where to start with this one. We had a wonderful "pow-wow" with AJ's teacher a few weeks ago. It.was.awesome. We were able to review the communication assessment she and his school SLP did following the video assessment for the emc3 curriculum. AJ is at what I would call an in- between stage with his communication. He's mostly using gestures or movements to communicate. Our goal is to move him toward symbolic communication. What is symbolic communication?
The biggest thing I took from that meeting was answer to my question of "Why?". Ok, one of my answers to my many questions of "Why?" I've always been confused as to why, even though AJ's been exposed to sign language since 18 months old, he's still not signing or communicating. His teacher LITERALLY drew a stick figure to represent AJ. We figured out how old his eyes are. How old his "ear" is. Where is his hand function (fine motor)? His walking, etc. (gross motor)?
I had this moment of clarity.
Ear: 10 months
Eyes: 8 months
Fine Motor: 18-24 months
Gross Motor: 14-15 months
*Motors are estimates, they change and don't account for his scattered skills in higher functioning areas
AJ is truly all over the board with his skills. And that's OK. I'm working on a nice drawing of him as a stick figure, holding these numbers. I'm going to frame it. To keep my line of focus. And as he changes, we can change the numbers. I'm thinking this will be a positive thing for all of us.
AJ's teacher also had the Waukesha School District Vision Specialist come and hang out with AJ. I happened to run into her a few days later while picking up AJ from school. It was wonderful to chat with her in person. She felt there was no issues with his acuity (picked up a grain of white rice off the tray immediately). However, when presented with pictures, he just picked them up and played with them like a toy. If something didn't hold his interest, he'd zone off looking at the lights or around the room. Typical AJ. She wasn't sure about the pictures, if he just wasn't developmentally ready, or it was something else.
On my drive home that day, I had an epiphany. AJ was really never exposed to pictures. Like, here's a picture of a ball, truck, and apple. AJ, where's the apple? He couldn't hear! He couldn't see properly! There was one book with pictures he loved, but it was a chipboard book with 9 pictures to one page. He was fascinated with the food page. He wasn't exposed to books or pictures continuously unitl he was home here with us. We just never did the picture book thing. I know, bad Mommy. Bad Daddy. But honestly, AJ was so trapped in his little world, there were some things that we just didn't do. He's just now enjoying books and beginning to continuously visually attend to them.
I shared my thoughts with AJ's teacher about his limited exposure to pictures. I also shared how he loves his "AJ" and "Family" experience books. Those have pictures of him doing his daily routine and pictures of our family. Picture concepts : On My To-Do List.
We had AJ's parent/teacher conference this last week. Things have changed. Oh, have things changed. It's simply wonderful. We heard from AJ's PT, OT, and SLP at school. After probing AJ, it was suggested that we begin helping AJ communicate with the use of physical objects. We had discussed a switch or picture boards, etc. before, but it was agreed that this would be the most beneficial place for him to start.
The awesome thing? He's already doing it! The day before the conference, AJ went into the garbage (it was uncovered) and grabbed a tv dinner box. He brought it to me. Translation: Mom, I'm hungry. Wednesday, he brought me a fork. Translation: Mom, I'm hungry. Today: He brought me his coat. Twice. Translation: Mom, I want to go bye-bye.
The idea is to pair an object with an activity or items in his daily routine. I was able to watch AJ communicate using this technique with two vibrating toothbrushes (lets call them VT A&B) at school. His SLP held VT-A (vibrating) behind his CI processor. He heard it, located (non-vibrating) VT-B sitting the table in front of him, grabbed it, and handed it to his SLP, who then said "Oh, you want the toothbrush", giving him VT-A (vibrating). This can be used with just a single object, or two.
We have been struggling and struggling to figure out a way to help AJ tell us when he has to go potty. I think for both Jer and I, as well as his professional staff, it is one of the most frustrating things right now. Not in a bad way, but I know its on all of our minds. His teacher came up with using a travel pack of wipes. GENIUS! We keep them on the end table in the living room. When we go potty, we take him to the table, grab the pack, walk to the bathroom, make sure he can visually attend to it at some point when he's in there, then take it with us back to the table when we're finished. We've decided to do 4 of each object (well, for most of them). One for home, one for in the car/out and about, one for school, and one for 'Drama's house. I've washed one of each of AJ's empty milk, juice, and water containers. We will velcro those to the front of the fridge. That way, he can go and grab what he wants and tell us what he wants. It also increases his exposure to making choices.
We still have a list of things, like how do we represent bedtime with an object, and multiples of the same object. We need to keep these items in the same place all the time, so he knows where they are. All in all, we are very excited, as he seems to be picking it up quickly.
AJ is interacting more and more with his peers. They had snowcones for snack last week. I watched, from afar, how he did during the entire snacktime. He watched the other kids as they ate their snowcones. He heard one of his peers, when she spoke rather softly, and was 3 seats away from him. He turned to her immediately. He attened to the blender when it would turn off and on. He participated and displayed patience when they felt, scooped, and blended the ice. He's become more and more...of a big boy. And I absolutely love it.
I did see how easy it is for AJ to loss or not give visual attention in his school setting. No matter what communication mode you choose, visual attention is required for all learners. I'm not talking about lip or speech reading or any of that. You kinda gotta look at what your doing, right? Sure, I could tie my shoe now without looking and probably find success. But when learning, you have to look at that big wooden shoe cut-out and look at where you are putting the laces. AJ struggles with that idea. And when I realized his eyes are only a few months old, its all making sense. His teacher is anxious to hear what AJ's eye doctor has to say.
Eye Doctor: We finally have a follow-up scheduled again. That office must think I am an awful parent-with our cancellations and rescheduling. Oh well. Life happens, and I always given them plenty of notice! I'm anxious to see what she says as well. This is techically a post-op visit. She'll be filling out a referral sheet for AJ's teacher, so I'm trying to remain positive. No matter the outcome, I can only see the information as being helpful, not harmful.
Speech: After much discussion between Jer and I, AJ's teacher and SLP at school, AJ's former SLP(s) at CHW, his CP doc, his neurologist, and his private PT and OT....AJ will be receiving outside speech and feeding therapy from HealthReach Rehabilitation (the same clinic his PT/OT are). We have his initial evaluation next week. The SLP we have chosen is phenomenal. I have seen her treat firsthand. Multiple times. I believe she is going to be a great fit for AJ (and me).
To top that off, AJ is going to be eval'ed by another world renowned therapist. I literally have chills about this. Some of you may remember that AJ was treated by another rock-star therapist, TWICE. She is a PT. This time, its an SLP. Jer and I, as well as AJ's entire team, are thrilled about this opportunity. I can't wait to see what she has to say!
In Other News: AJ continues to do well with potty training. He averages one accident per day. Over the last two days, he's gone to the potty and sat down on his own. This is a huge gain! He did it again this morning and I just had my mouth hanging open. **Update: This afternoon he walked into the bathroom by himself, closed the door, went and sat on the potty (after he sort of tried to pull down his undies) and went potty! All by himself. *BIG CHESTER CHEETO GRIN*
We will be posting information regarding the first HLAA Walk 4 Hearing here in Milwaukee in May. We have created a team and will be walking for AJ and to help spread awareness about hearing loss. We hope you'll walk with us or donate! Stay Tuned!
We are submitting a scholarship application to the AG Bell Convention in Orlando, FL in June. We are hoping we will be approved and will be able to attend this fabulous national convention. Wish us luck!
We are also in full swing, planning AJ's 4th birthday party. Am I the only person who thinks there is a huge difference between 3 and 4? It's going to be a 'sports theme'. Hm, I wonder why....
Our house is no where near ready. So much for our goal of March 1st. We'll get there, right?
I was asked to be on the committee for the Center for the Deaf and Hard of Hearing's annual fundraiser "Tasting Tuesday". I am so excited! Our first meeting is this week and I am hoping to contribute as much as I can to this event.
I think that's enough, don't you?
Whoa. That's a whopper of a post, Heidi! Can I just express my amazement at how you juggle everything!?!? Wow. Hopefully I will see you at the meeting on Thursday. :)
ReplyDeleteHi Heidi and Jeremy,
ReplyDeleteI always enjoy your posts. You are so busy with AJ and I think that I have lots to do. So glad to hear that AJ will get his second CI. Haven't heard from Jeremy who you were referred to for his next surgery. Hannah was referred to Dr David Brown and he will be putting a tube in her ear this week since when he saw her, her ear drum was sucked in. Hopefully no more cholesteotoma but we will see. Keep up the great work with AJ.
Pam Lee