Sunday, October 25, 2009

A Plethora of Cloudiness

So, yeah. I've started multiple posts only to delete them. Unsure of what the title should be (the one above is pretty good, hey?) and unsure of where to start.

PT & CP:
AJ received both his AFOs in the mail two weeks ago. Why they mailed them, I don't know. We soon figured out that they were way to long and needed to be trimmed. AJ currently wears a size 5.5 shoe. The only shoes that would fit with the AFOs on: 9. CLOWN SHOES. We had them trimmed this week so they fit much better. We found some Stride Rite shoes yesterday, which were on sale and a heck of a lot cheaper than the special shoes they make for AFOs. They are a size 7, but aren't much bigger than his old 5.5's. We pulled out the guts AKA the pad your foot sits on inside the shoe. This makes his shoe a tad deeper and helps the AFO fit better. The shoe is very flexible, yet has a good base. I was pretty excited to find them.

He's doing very well in his new AFOs, he'll be wearing them to school for the first time tomorrow, so we'll see how that goes. You can totally tell when he tries to walk by hyperextending his knee. Oops, sorry buddy, not gonna work! His walking in slower and much more controlled. They also make crawling near impossible. Now he's pretty much over crawling (I'd say 95% walking/5% crawling) but this gets us that much closer to 100% walking. If he falls, he gets right back up to continue walking.

His left foot/leg are rotating in A LOT. When we got to PT/OT last week, AJ's left shoe, while walking, was perpindicular to his right foot. His two feet together could have been a perfect backwards "L". Scary. I voiced our concern to AJ's PT, who said she knew it was going to happen eventually. Well, at least she saw it coming. His foot/leg is turning in due to his tone (CP). His left side has been super tight off and on for the last few weeks.

There is nothing we can do as far as exercises go. But, we can help it with the AFOs and the de-rotation straps. Here is a photo of AJ the first day we put him in the straps.

Now, the excess straps are hanging to the left and right because, I'm convinced they gave us the XL child size. Of course, since my child is XS. Anyhow, I've since trimmed them, so there isn't all this excess strapping everywhere. He can wear the straps under his pants, which is great. Although I'm not sure how they are going to work with potty training. Its already a trick to change his pull-up with these monsters on. Can you tell they drive me nuts? The purpose of the straps is to avoid botox and surgery. They are called de-rotation straps as they help keep his feet straight and not turn/rotate in. SO-needless to say, he's wearing them whether Mom likes it or not. His PT will continue to keep an eye on his left foot/leg. Since AJ is already an established patient with his physical medicine doctor (thanks to our PT's early thinking!), we'll be able to get in or get what whatever AJ needs in a timely manner.

His climbing skills has definitely improved. He crawled into the ball pit all on his own at his PT session last week, without using the aide of a smaller step-stool. His PT was very impressed.

AJ's use of his left hand has dramatically increased, which his OT was very pleased with. He's also created this (annoying) habit of picking up and clutching small items with his hands. He's shifted to using the right hand to clutch, so he's leading with his left hand a lot. During his OT session last week, he reached and pulled out puzzle pieces with his left hand-by choice. If you present three blocks to him (to stack), he will guide your hand or the block itself to stack them. He continues to make gains with container concepts and shape sorting. At OT his placed the circle into the correct slot of the shape sorter!

AJ has made some big gains with eating. His cup drinking has improved here at home, with less and less leakage. Unfortunately, his open cup drinking has gone haywire. I'm not sure what that is all about, but I'm thinking its the consistency. I'm ordering some thickened apple juice (both the nectar and honey consistencies) to use here at home. The honey consistency used to be his "treat" at speech/feeding therapy. he couldn't get enough of it, and it 'slides' slow enough to help him learn flow control. He is loving Lorna Doone shortbread cookie crisps, animal crackers, cold cereal with milk, hard chocolate chip cookies, and anything else he can bite. We've also seen some great tongue lateralization and chewing. His entire tongue was on the right side of his mouth the other day-meaning he was using his left tongue muscles to chew. Amazing. His swallow study is scheduled for mid-November.

AJ continues to make steady gains at school. We had our 2nd home visit from AJ's teacher last week. AJ definitely knows his day. He knows he has to complete an activity to go on to the next. He seems to know just about how long each activity lasts. He is now using an eye gaze/making eye contact with his peers on a regular basis. We were so thrilled to hear this! He crawled through a tunnel with a flashlight with his peers. He has definitely become comfortable and developed curiousity in his environment. One of the other kids left the water running at the sink...AJ saw the water running, walked across the room, climbed up the stepstool and stuck his little paws in the water. :) He's also understanding the concept of "give it to me", when an adult asks for an object. Now, he may not give it to you, but he knows what it means. What kid is really going to give up a toy he wants?

We've also noticed that AJ has a hard time using multiple senses. Meaning, if his eyes and hands are focused on a toy he's playing with, he won't "tune in" to his hearing. This is comming with children with hearing loss (good to know, right?) and isn't something out of the ordinary. We are challenging ourselves to engage AJ in activities that encourage the use of multiple senses. Sabotage plays a big part of our day.

I voiced our concern about AJ's lack of speech sounds. There is more meaning behind this, which I will share in the "CI section". AJ's teacher agreed. Most of his vocalizations are still "technically" cooing and early babble. She shared that AJ may need some tactile cues to help him learn to use his vocal cords/use his voice. She shared a story that calmed me almost instantly. We talked about strategies, such as using a voice light and placing our hands on his neck to encourage him to use his voice. The concept is emerging, as we play a flashlight game that AJ's Birth to 3 TOD taught us. He understand the turn taking now (we vocalize and the flashlight turns on, when we stop, it turns off) to the point where he'll hold it up to his mouth, with random vocalizations I'd say, em, 20% of the time? But he knows he'll hear my voice when he puts it to my mouth. This is a great improvement. We also discussed a picture board. We discussed using it short-term, as a way to help AJ communicate. I'm still mulling that over.

We also discussed his lack of signing. We broke down a handful of signs to figure out how many hand positions were in each. Did you know there are 6 different hand movements to create the word "help"? They've been working on mirror play with AJ at school, using his own image in the mirror, along with photos of Jer and I. Mommy and Daddy are easy hand positions. I swear he signed Mommy the other day here at home, but I'm not sure. The only sign he does is "more"- still. I don't know. And I wish I knew.

All in all it was a great visit. Oh, and I think his teacher now fully understands my addiction to the $1 bins at Target and various other stores. :)

If you haven't noticed the ticker at the top, AJ has now been implanted for 6 months! Time flies. I'm working on a video showcasing his skills, which I hope will be done soon. In the meantime....

I am so frustrated, I could spit tacks. How can I say this nicely? We are being met with fierce opposition regarding AJ and a 2nd implant. There is a great white elephant in the room. I'm not sure what kind of progress they want him to make, but clearly what he has done is not enough. I just don't get it. AJ is not the typical CI patient, he's got multiple issues. I get it. When they don't see typical progress, it creates hesitation. Well, stop hesitating! You spent all this time telling us we should have low expectations going into his CI and that he may not talk and blah blah blah. Now he's blowing us all away, and its still not enough?! We are determined, and if that means going to Portland or another region, we might just have to do so. Ugh!

I know that was vague, but it was vague on purpose. Moving on...

AJ is learning conditioned response with the two of the Lings. He interrupted his OT's conversation with dead-on eye contact and vocalizations (he was also signing more intermittently) when she (naturally) stopped swinging him as she was so deep in conversation. She didn't notice he was trying to get her attention, but I DID! When I told her he was trying to get her attention, she stopped, turned to him and asked if he wanted more, he signed more. He knows the difference between people's voices. He made direct eye contact with a complete stranger today. He didn't see her at first, but turned when he heard her voice, and then made eye contact for a good 10-15 seconds while she was talking to him. It was amazing. He's beginning to pay attention to music. He has a real big crush on Beyonce. I don't know what it is with kids and Beyonce!

AJ's Great Grandma (my Grandma) was diagnosed with lung cancer and cancer in her lymph nodes a little over a week ago. She is my 89-year-old spitfire, sweet as pie and sharp as a nail Grandma. Enter the plethora of cloudiness. Jeremy and I left for an overnight getaway to Madison the night after she was diagnosed. I'll admit it was a little hard to enjoy the Badger game with cancer on my mind. I was so distracted I forgot to take AJ's backpack to school one day (which is SO NOT ME) and continued to function, or should we say try to function in a cloudy state of mind for the rest of the week. We're still in a holding pattern, waiting for more scans, tests, and results before decisions are made. She's busy entertaining the hospital staff and is enjoying her Great Grandma bragging rights, sharing AJ's photo with everyone she sees. That makes me smile :)

Sometimes there is just so much going on, we feel like we can't function or focus. This happens a lot with AJ and his personal agenda, but with my Gram's news, put a fork in me. We've had quiet weekend, which Jer and I were both thankful for. I'll leave you for now, since we are seriously behind on our plethora of DVR'ed medical dramas. Such party animals we are....


  1. We did the voice activated light thing and feeling the vocal cords in the beginning with Peas too. It took a while, but he finally got it! It is definitely worth a try.

    In the interest of staying vague and diplomatic, I have just three things to say to you:

    1. I am spitting tacks too.

    2. I would take a certain someone up on his offer to hook you up with the right people.

    3. Hestation=lost time=waste of time

    Hang in there, girlie. :)

  2. This comment has been removed by a blog administrator.


Directions for Leaving a Comment:

Scroll down to the bottom the post you wish to comment on. You will see the time/date stamp on the bottom along with the number of comments and a small envelope. Do NOT click on the envelope! Click on the "0 Comments".

A text box will appear for you to write your comment. You can use Anonymous, just leave your name at the end of your comment so we know who you are! Thanks!