Wednesday, November 25, 2009

Thanksgiving Day is Coming...

AJ has been listening to me sing this song all morning...

*Disable the music above before viewing video**

Tuesday, November 17, 2009


Woah! I just came to the blog and 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 whats been going on:

AJ started turning in his left foot again last weekend. It has progressively gotten worse. Along with our his PT, we've decided to continue taping him with Kinesio Tex Gold 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 (not pictured). 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 with out putting pressure on his left foot/leg, which often happens when he's super tight. I have a rough-draft started to the company who makes these straps. Just a few suggestions on how to help them work better, AKA stay on an active child.

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 & 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 his hand brace on 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 deterent 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 thats 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. Its his way of protesting an activity, if he wants something, and its 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 losts 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, its 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. Guess the dogs are good for something :) 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". Its 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 2 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 co's look at the report and see safety, its 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 PB&J and Ham & 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 Milwaukee PC today. The disc that is retrieving files from the desktop, well its working, just a little too well. its hard to explain. 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. But hopefully Milwaukee PC 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 myself 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.

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 seranading her when she walked in the door. Oiy.

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

OH-And the new song? Yeah. The "na na na...its like my ipods stuck on replay" has been in my head for days so I thought I's share it here. Its catchy! Here's a thought, maybe AJ will like it. The na na's could be good for him to hear...

Friday, November 13, 2009

Complaint & Request

Dear Mr. External Hard Drive:

I am writing to you today with severe disappointment. It was suggested that we buy an external hard drive to store our digital photos. Since I have a horrible habit of taking 100 shots, uploading, and not downsizing (even if most of the shots are unusable), our desktop computer was quite full.

I began the painstaking process of opening our photo program on our desktop and sending the files to you, our new External Hard Drive. So shiny and pretty with your flourescent blue lights. I created folders, then folders within folders. Labeling each folder for pictures from 2005 until mid-2008.

I am thankful that life got in the way and I was unable to upload the rest of the photos from mid-2008 until present. Because, you see, YOU CRASHED. STOPPED WORKING. FRIED. LOST ALL MY PHOTOS OF MY PRECIOUS SON, our families, friends, and memories. From the moment we saw his face, to our visits in Guatemala, to his first days and months home. His baptism, his Fiesta, his birthday party, his first holidays here at home. His therapy progress, and so many videos I can't count that high.

How do you have the right to just stop working one day when the whole entire purpose of getting YOU was to protect our photos. Hm? Do you have an answer? No. I am not happy. Not happy at all. I am thankful to have discovered that much of what I transferred from mid-2007 on is still on our desktop computer. WHEW. Thank goodness I wasn't *gasp* productive and deleted those after I transferred them to you and your stupid non-working flourscent blue lights. Thank goodness I found memory cards that I had saved "just in case" from our 2nd visit and pick-up trips to Guatemala.

I am still furious that you have eaten the entire photo file from our first visit to Guatemala, including videos. I am furious I have lost all of the correspondence with our adoption agency, the PDF file of AJ's former website, and even my freakin' Christmas Card Address List.

Our friend AKA computer GURU is coming over shortly. Please, won't you work? At least so we can pull the files and transfer them somewhere else. I realize this may hurt your feelings. I'm sorry to say I don't care. You messed with my memories buddy. Not cool.


One PO'ed picture-taking Mama
Dear Desktop Computer:

Our dear friend AKA computer GURU will be arriving shortly. He is going to put a little disc into your tummy. Please read it and follow the directions. Please allow this disc to find and recover every picture and video that was ever in your tummy. This what this disc does, so please be friendly.

Please work faster than your normal dinosaur pace. Pretty please with a jump-stick on top? I must say you are working well so far today.


One Hopeful picture-taking Mama

Thursday, November 12, 2009

Take that Cerebral Palsy!

On a whim, I decided to have AJ drink his apple juice out of the juicebox today. Meaning, for the first time EVER we were going to attempt a straw. He's played with regular size straws before, including chewing and them and folding them up, etc, but he's never drank out of one.

I was told that drinking from a straw would be extremely difficult for AJ due to his poor oral motor skills. This thanks to his cerebral palsy. I was also told that drinking from a straw is NOT A NEEDED SKILL. I don't care that its not a needed skill. Kids drink from juice boxes. Its just a fact. My kid will drink from a juicebox that has a straw. He will learn to drink from an open cup-successfully. He will learn to drink from bigger straws. When he's in college maybe he'll share one of those mondo margaritas that come with multiple straws with his roomies. He will learn the skill of drinking from a straw. He just will.

AND TODAY, HE DID. At first I let him figure out that I was sticking the straw into his mouth. Then I squeezed the juicebox a bit so he would learn that 1) liquid comes from this thing in my mouth 2) that liquid is my apple juice. After he gave me the cue for "I like this Mom"-which is a cheesy grin-I let it sit in his mouth and waited for him to do something. He sat for a while, thinking it would magically squirt juice into his mouth again. When it did not, he started using his tongue to roll the straw from side to side in his mouth. Then he figured out how to close his lips around the straw. Then he figured out how to suck out the liquid! It was amazing. I'm shocked and uber proud that he was able to do it so well.

By the time I ran to get the camera, he was pretty much done with it. I did manage to snap the picture above, despite that fact that holding a juicebox, camera, and trying to make one eyeball watch your child while the other focus' the camera is rather difficult. While this picture isn't the greatest, (as he's leaning to the left and looks like he's sipping alcohol rather than juice),it is proof that our little man is once again beating the odds before him.

Now if I could just get him to learn not to squeeze the juice box....

Tuesday, November 10, 2009

It's Out!

Toys R Us' Toy Guide for Differently-Abled Kids is OUT! Last year Meredith Viera was the spokesperson. This year, its Whoopi Goldberg. You can check it out HERE.

I learned about this catalog last year and have already been looking forward to this year's catalog.

The catalog is great for all kids-especially since they break the toys into skill catagories: Auditory, Creativity, Fine Motor, Gross Motor, Language, Self Esteen, Social Skills, Tactile, Thinking, and Visual. I like to know what function the toy serves. Imagine that.

I don't think the "Auditory" skill is listed first just because it begins with the letter 'A'. I think they listed it first just for CI families. Yep I do. This year, it warms my heart to be able to look at those types of toys and not let the hole of dark depression and sadness consume me because my child can't hear . Yes he is deaf. He is deaf and can hear. How cool is that.

Wednesday, November 4, 2009

AJ CI 6-months Post-Activation

**Disable the music above before watching the video!**

Monday, November 2, 2009

It's The Great Pumpkin, AJ

d/ Benji & Heidi

Last night Jer and I were trying to find a movie to watch On Demand. There isn't a whole lot out at first glance. After watching previews for about a half hour, we stumbled on the movie Love n' Dancing.

The movie stars Amy Smart, Billy Zane, and Caroline Rhea. Or in my language, the girl in Just Friends, Rose's jerk fiance in Titanic, and one of the aunts from Sabrina the Teenage Witch.

It was a great movie! Why?

1) The lead male dances with a HEARING LOSS, which plays a large character in the movie. We thought they did a fantastic job. He's little d (d), meaning he wasn't born deaf, but lost it later in life (teenager). He wears hearing aids but turns them off while dancing, until...:)

2) We love dancing movies. Any kind. Yep, we're suckers.

3) Benji and Heidi from So You Think You Can Dance are in the movie!!!!

Check it Out!

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!