Our precious little boy, Aiden, was diagnosed at birth with profound hearing loss in both ears; he was born deaf. This site is to help journal my feelings, keep family and friends updated on our son's journey, but more than anything, I hope our story can help ease another family's worries as so many other families have eased mine.
Another chapter in our life opens ... this is Our Journey to and beyond cochlear implants ... Our Journey to let Aiden hear.
As I wrote a couple months ago, NEW BEGINNINGS have been in the works and all I can say is WOW. I knew in my heart a lot of these changes were what we needed to move forward. No regrets.
My son is taking off.
For example:
HIS SPEECH and LANGUAGE
2 MONTHS AGO: "Help you mommy!" TODAY: "Mom I need help! I can't reach my chocolate milk! Mommy help me please!
2 MONTHS AGO: "Kailyn soccer. Aiden park." TODAY: "Kailyn go play soccer and mommy and Aiden go play at park. I like the park mommy. Oh thank you!"
2 MONTHS AGO: "I want bed mommy." (meaning he doesn't want to go to bed). TODAY: "After bath, time for bed? I don't want go bed, I stay up you and daddy."
2 MONTHS AGO: "What's next?" TODAY: "After school, library and get books, then what's next?"
2 MONTHS AGO: "Aiden Lucky Charms please?" TODAY: "I hungry mommy. I have Lucky Charms no milk."
2 MONTHS AGO: "Ow Kailyn!" TODAY: "Kailyn don't hurt my head! That hurts! owww!"
2 MONTHS AGO: "Aiden three year old." TODAY: "I four years old next year I five and then six. I not three no more."
He's using phrases like - "Oh, it's so beautiful!" and "Wow! That's amazing!" and "I am so excited mom!" and "I said to hang on." (really? I must say this.)
He's picking up on language through incidental learning left and right. He's expanding his answers to questions to include words within the question.
When I didn't understand that he wanted me to turn the radio OFF in the car (I thought he was saying up) he overstressed the oFF saying it perfectly (he really has a hard time with this letter) and when I asked, "Why?" he answered, "BECAUSE it's too loud!"
I kid you not. His language has SKY.ROCKETED. We still have a lot of work ahead of us, but I knew it was in that cute little head of his just waiting to explode!
HIS OT
I really need to write a post about Aiden's OT. She is uber-amazing. When I think about her, I smile. When Aiden sees her, his face lights up. She has a gift. I'm going to dedicate a post all to her, but wanted to give an update here.
Six months ago, Aiden could barely walk across 2 balance buckets, this week, he made it across all SIX (or seven?)!!!
He's running without falling (ok, most of the time).
He's processing multiple tasks in an a lot more seamless manner than he's done before (still a little ways to go, but the boy has made HUGE strides!)
A lot of his progress in OT transfers over to his speech. Again, need to dedicate a post about this. We're still scheduled for neurology in May, as he still has off balance days (or hours). I asked Miss A if she thought we could "graduate" soon, and she thinks we still have a bit to go. That's okay, because we'd miss her in our weekly schedule!
HIS DAY to DAY SCHEDULE
He is sleeping in his OWN BED and going to sleep in his OWN BED at 7:30 and falls asleep on HIS OWN! This is huge. TWO MONTHS AGO: I would have to lay with him every night as he tossed and turned and didn't fall asleep until well after 9 by which time I was also out. Then he'd be up throughout the night, 3-4 times or more. I was getting no down time at night and neither of us were getting any sleep.
He has always been a happy go lucky kid, but I'm telling you, the kid has an extra pep in his step these days (literally, because he's learned to gallop (another HUGE milestone for him) and he does it everywhere we go).
He is eating better. I know kids go through stages, but it seemed like his appetite came back the same time all these changes happened.
Him and I get the whole afternoon together - to be silly, play hide-n-seek or go-fish or legos (or work on those pesky /f/ words), or dance, or go to the park, or even just sit back and watch a movie together. It's amazing having this time back with him. I LOVE our alone time together. Seriously, PRICELESS.
He's coming out of his shell and showing us what he has. It's all coming together. I attribute a lot of this to being around HEARING peers (good language models), an amazing new teacher, his wonderful OT, and a new weekly AV tele-therapy program with the amazing Dr. Todd Houston and his grad students through the University of Akron (more to come on this too) ...
OH, and he's FOUR ... and everything seems to change at FOUR. {SMILE}.
the GOOD Aiden has added new words to his vocabulary list! He now says "meow" (without the /e/, so more like "mmmmow"), "hah" (hot), "buh, buh" (boat), "dah, dah" (duck or quack), and "En" for his classmate Ben.
He has even attempted to say his own name, is sounds like "Ay-en"!
Aiden continues to try to walk. He's going further and further, but just is not taking off. He can walk clear across the living room, will look at us, then fall to his knees. Frustrating but good that he continues to try.
He is trying to blow ... bubbles, a piece of paper across the table, my hair, anything. We've been working on this to help him with his "oo". It's hilarious! He either lets out a big ol' raspberry or has a wide round mouth blowing out, like sounding out the letter h.
He is trying to imitate us more, but mainly just the number of syllables. For example, for banana, he will say "ah-ah-ah" or pumpkin (and open and many other two syllable words) he will say, "uh-um" or "ah-um" and with each one he inflects his voice.
He's trying out /p/. I have been working on p since last summer! He's been saying "uh, uh, uh" (up, up, up) for some time, but I've heard it with that /p/ a few times now. We've been blowing a lot of bubbles lately too to help that /p/ POP!
His receptive language is growing. I really need to sit down and write a list.
He doesn't cry anymore when I drop him off at school! He smiles! This is HUGE!
the BAD Aiden is still stuck on the same consonants and same vowels. We have m, b, d, and sometimes n (although it seems we've lost it). Then put these with the his vowels of "ah" and "uh", and so consists his vocabulary list.
Even with all the HallOOwEEn sounds of /oo/ and /e/, still nothing. For /oo/ we get a deep, nasally /m/ and for /e/ we get that gasping for air sound.
Buh-buh (bye-bye) is just that and has been replaced with da-da. No clue.
We've completely lost the long o and long i that we'd hear every once in awhile.
The only Lings he'll use are /ah/ and /m/. Period.
He's still on the bottle. This is supposed to be only right before bed, but when Aiden wants a bottle he goes into the fridge, climbs up, and gets his own. I often find him sitting on the couch drinking his bottle. We had to put a lock on the fridge.
He's still not walking.
and the UGLY
Terrible twos 6 months too early ... the boy is out of control.
He's stopped sleeping through the night. Again.
He screams. Either a deep throat gurgly all out "AHHHHHH" or a shrill high pitched "AHHHH". His AVT thinks it's the boy in him. I'd like to take this part of the boy out of him.
We're working on the term "inside voice".
He's still not walking.
I have to say though that my little monkey makes me smile all.day.long. He has such a great personality, so much spunk, is such a little comedian, and truly is always happy (even when he is screaming, he laughs at himself when he's done ... he thinks it's funny ... I don't).
So there you have it ... so glad the "good" list is longer than the others! Although I have concerns with his expressive language and his maps, I do believe he's doing amazing. I look at him everyday and can't believe my baby is deaf. We have an appointment Wed. with our Hopkin's audiologist to hopefully clear up these mapping issues ... hope this adds more to our good list!
I haven't been posting a lot lately due to our trip to Wisconsin, plus with summertime here, my kids hog any computer time possible. I have caught some moments of Aiden on video though that make me smile and show a little bit of where he's at in his hearing journey.
I've mentioned before that Aiden was vocalizing what sounds like "Mmmmmaaa" for "more". I finally got it caught on video. On this day, I was feeding Aiden his first cold bowl of cereal ... and he LOVED it.
We try to focus on a select few key phrases each few weeks. The ones we're working on now are,
"Knock-knock-knock .... hello (or open)", before we open a door or really, with anything that opens.
"SOOOO BIG!" (then throwing hands in the air).
"Let's go bye-bye." (then talk about putting on our shoes and shake the car keys, etc, or say "bye-bye" to whoever is leaving and watch them leave.)
"Get down please." Because he climbs onto everything ... and for him to vocalize when he wants down from his highchair.
In this video, Aiden had just started throwing his arms up when I'd say, "So big!", but what's even better is the Harley Davidson motorcycle that takes off outside and scares Aiden! You'll see too that he only has on one CI (since I was on vacation and it's inevitable that something WILL break anytime you're on vacation ... and this time it was one of his CIs). Anyway ... here's the video.
We're trying very hard to get Aiden walking. His sister didn't walk until she was 20 months, but we also know that with his hearing loss, he's more focused on learning to hear than learning to walk. PLUS, he does have EVAS, which can cause balance issues. In this video Aiden has learned to walk using his walking toy ... and then in the end gives a show of his silliness and "So Big!".
and last but not least ... Aiden dancing! It's not the best video, but Aiden has started bopping along to music lately and it just melts my heart! We are a HUGE music family ... we all absolutely love belting out some good tunes! One of the things we looked at when picking our CI brand was quality of music. In fact, we even debated going bimodal (one CI and one hearing aid) so Aiden could enjoy the acoustic sounds of music (vs. the digital sound that a CI provides). I've seen many, many videos of CI kids though dancing away, such as our blog friends Thomas, and Lucas or maybe one day he'll create his own songs like our friend Gage does.... and here are Aiden's first dance moves .. to Aretha Franklin's "Respect" ... captured on video.
Aiden has really taken off with his vocalizations this past month. Not much at all we understand, but he's making noise and any noise from him is music to our ears. He screams with laughter as he plays with his brother and sister, fluctuates his vocals, mimics short and long durations, and all in all, is just a completely silly, VERY ACTIVE one year old boy. He makes us smile ALL of the time and we can't be any prouder of our little man.
I've been meaning to update Aiden's blog for quite sometime, but time seems short these days. We've all been sick, I had a long lost friend come spend a wonderful four days with me, and over the next five days we are going to be VERY busy.
On Facebook, there was a note going around "25 Random Things" and I truly enjoyed reading everyone's list (I'm nosey) so I thought it'd be fun to create the same type of entry here, but about Aiden, from his point of view, through words, pictures, and videos!
1. I have a very busy week ahead of me. On Sunday I'm getting baptized, on Monday is another spotlight day (you'll see below), then Wednesday, the biggest day of them all, I'm having surgery to get my cochlear implants!
2. I don't like pumpkin pie.(This video is not captioned, since it is mainly just my family laughing at me).
3. My new favorite foods are blueberry muffins, grapes and bananas. I'm truly getting sick of the baby mush ... bring on the real stuff ... even if I only have 2 1/2 teeth!
4. I hate my hearing aids. I don't know why my mom constantly puts them back in when she should know by now, I'm just going to pull them right back out. She thinks those silly looking hats work, but they don't. She will not win.
5. I am a very determined little boy and always strive to get what I want. My fave is the cords to the computer. Note to mom: Your barricades do not work.
6. I wake up every morning between 4 and 5am so mom will get me a bottle and put me in bed with her. I love snuggling! The best part though is when I wake up, I give her a few good headbutts, my dad a tug at his nose, then laugh.
7. I don't crawl. In fact, they say I'm behind in my gross motor skills, but I pull myself up onto anything and can do some fast cruising around!
8. Raspberries rock. I blow them all the time, especially when my mom sticks a whole spoonful of food in my mouth! That really gets her. I think it's funny.
9. I only have two and a half teeth, two on the bottom, and one that's coming in at the top ... all random and out of place ... I'll be able to pop a good beer bottle with that one!
10. I LOVE LIGHTS! I love them so much "light" was one of my first signs. If the lights off, I look at my mom or dad and sign light so they'll turn it on.
11. I also sign milk, more, and eat.
12. I love to torment my sister, especially when she's on the computer, but she still loves me!
13. I also love to torment our two cats!. My dad nearly threw them both out after one nearly scratched my eye out. I tried to pull him off the window ledge, by his tail. 14. With my hearing aids, I usually respond to my mommy if she's talking right by me. Somedays I just completely ignore her though ... by choice. Here's a day I was listening very well and my mom was so excited!
15. I love the camera, but not more than lights ... oh wait ... I love the light on the camera so I always stop and give mom a great smile!
16. My brother is teaching me to play video games already. One day, when I get to hear music, I'm going to jam to some Foo Fighters and AC/DC just like him.
17. If my mom leaves the room, I freak, just to see how fast she'll run back in!
18. I'm starting to throw temper tantrums. I like to get my way (see #5). When my mom removes me from the places I should not be (see #5), I swing my hand at her face or pull on her hair. Then she tells/signs to me "no", and I blow a big ol' raspberry at her (see #8).
19. Despite my tantrums, I am really sweet & innocent ... c'mon ... is this a face that you could be mad at?!? 20. I'm spoiled. What can I say? I really do no wrong (ignore #18 & check out #19 again).
21. Have you seen my baby blues? One day they're gonna break hearts. 22. I love to play peek-a-boo, wave bye-bye, clap my hands, and shake my head no. Oh yeah, and I have great farts, they make me laugh. All this while blowing raspberries!
23. After my surgery, I have to wait a month to "turn on" my new ears. My first one will be turned on 8 days before my first birthday. I'll have auditory-verbal therapy at least two times a week (not including 'mom therapy' everyday) to teach me what sounds are and put meaning to them. I just may hear when they sing happy birthday to me!
24. I'm going to do great with my implants, just like Pamela Anderson has with hers, but in a much different kinda way! Just like my friend Trevor said, I'm going to be a hero one day! Thanks so much Trevor for dedicating this book to me! You rock!
25. ... AND THE BIG NEWS ... I'm going to be a SUPERSTAR! My surgeon asked my mommy and daddy if I could be featured in National Geographic!!! They're doing a story on cochlear implants, found my surgeon, and asked him if they could feature one of his patients, and he chose me! They're coming to my house before my surgery to talk to mom and dad and capture my life pre-implants, then they'll take pictures during my surgery, and then at my activation! We're all very excited to help educate the public throughout the world on cochlear implants and just how amazing they are! Mom says I'll always be her superstar, no matter what!
10. I LOVE LIGHTS! I love them so much "light" was one of my first signs. If the lights off, I look at my mom or dad and sign light so they'll turn it on.
13. I also love to torment our two cats!. My dad nearly threw them both out after one nearly scratched my eye out. I tried to pull him off the window ledge, by his tail.
