One Year of Hearing!

Today is the first anniversary of Peter's first activation. I am hoping to film him and add that, but unfortunately he seems to have come down with a cold and is not feeling great, so we will see.

This last year has been intense, to say the least. Peter is doing so well, even better then predicted, so I can't complain. As much as I hate being so busy and driving so much each week, I am overjoyed about the results. Right now we have 2 mornings of Oral school (class is 9:00-11:30, with 30 minutes of that time with a speech therapist), one morning with a 45 minute Music Together class followed a 60 minutes AVT session, and occasional play dates at the School for the Deaf to see ASL in action. I had given up on the county services because they were so depressing, but they are revamping the program starting with summer session, so I might see if it's any better.  I don't think you have to do as much as we do to be as successful, but I don't want to cut back on what seems to be working for us.

Peter's vocabulary continues to grow weekly, if not daily, so it's impossible to keep an accurate list! I will add a document showing signed and spoken vocab growth over the last six months, but since I did it for his birthday it is already out of date ;)

Two-word combos are frequent, three words are coming along nicely ("Where mama car?" Or "Where red vacuum?" for example). Peter has some great listening skills- last night from across the room and up half a flight of stairs he heard the door open and shouted "Hello, Daddy!" As my husband came home. He said it so clearly my husband thought it was our 5-year-old daughter!

Current obsessions: the Music Together song "Hop Ol' Squirrel", watering things with the spray nozzle of the hose (sisters included), opening doors, or just shouting "open!" when he sees doors, clocks ("Tick-tick, tick-tick!!!) and identifying people who are crying (and if it is his sisters, making fun of them for it !)

Below: one poorly filmed, hastily edited video snapshot of where we are.

Right now I feel like we are in the middle of scaling Half-Dome. The climb is not over. We are securely tied in, and I don't think we are going to fall at all, but there is still a lot of hard work to do. We will pay for one more year of school, and we have one more year of coverage for the AVT therapy, then we are in the hands of our school district (which is tiny, and I don't think they have ever had a CI kid, and maybe not even any deaf or hard-of-hearing kids). I feel like that set of transitions will be like stepping off of Half Dome, so I had better get to the top before they happen ;).

Lab Rat

Today we took part in a science experiment! I am not sure exactly what kind of results they are looking for, but it was run by a neurolinguistic lab out of one of our state universities. They did three separate experiments, all designed for CIkids who sign, too. The first one was auditory- Peter had CI's on, and watched a silent video, and they played some (loud) random noises. Peter had a little cap on with electrodes touching his scalp, and they recorded brain response to the noises. Peter just sat in my lap, and was completely unfazed, though I could tell the first loud noises were a bit startling. The second experiment he still had the cap on, but no CI's, and he watched a video (of a funny claymation penguin) with some random peripheral vision things once in a while. The last  exercise was just a language (sign) survey- so no cap, and CI's were back on. One of the researchers would show a page with two pictures, sign one and ask which picture it was (in sign). Peter did so well! He didn't know the signs we don't use (like CANDY) and there were a couple where he liked one picture and was excited to touch it regardless of the question, but he got a huge majority right- and I have never done that kind of game/test with him at home in sign.

The whole thing, including picking a prize (toy tractor for Peter, $20 Target card for me) took less than an hour, and afterward we went to the playground for a little bit. It was beautiful and sunny, and a fun start to Peter's birthday weekend!

Age-appropriate!

We have done a few evaluations lately as parts of various programs, and on two separate evaluations from two different speech therapists Peter has tested at within normal range FOR A NORMAL HEARING CHILD!!!!

He is on the lower end of normal right now, but moving quickly.  One therapist said she had never seen a child test at that level with less than a year of hearing. Our work is far from done, but it is such a relief to know that it is truly paying off. I think all those different pieces - family, me, signing as much as I could from birth, music class, school, and his three different speech therapists all contributed to his growth over the last year. We are doing so well we got booted from Baby Talk (a free FaceTime-delivered distance therapy program), so they can help families who need it more. Gotta say I don't mind being dropped because Peter is just doing so well.

I know not all kids are going to catch up like that. I think it is usually closer to three years old, but they do catch up, and are often ahead of hearing peers entering school!  This technology is amazing!

Uh Oh!

My poor neglected blog. I guess that is what happens when you juggle lots of things. I have been super busy working with Peter, plus doing costumes for my second grader's school play, and my iDevices all need to be cleaned out so I have enough memory to film and post videos....oh well.

Anyway, since this blog is supposed to help me document progress, I wanted to say that Peter let me know when the batteries in one of his processors went out! He has occasionally brought his BTE processors to me when they fall off, but he doesn't wear them all the time (as he has a habit of throwing things, and I don't want them thrown!) but yesterday he looked up at me, held out the processor for his Neptune (which had been tucked in a vest pocket) and said "Uh oh!". The headpiece   (Or coil) was still on his head, so it wasn't that, then when I looked at the processor it had the flashing orange light indicating it was about to shut down because the battery was almost dead.  So it could be a total fluke, because there are still plenty of times (like right before nap, or a tantrum) when he purposely takes off the headpieces.  If he is not mad he usually leaves them alone, so I don't think they bother him, but this was the first times he called attention to it not working, not just that it had fallen off. So...he is bonding with them? I hope so. He doesn't seem to mind hearing. And I am pretty sure he likes hearing, especially listening to fun kid music.

When I told my husband that this was just the start of "reliable reporting" and that the continuum would stretch for several years until he could manage and trouble shoot any and all of his own hearing technology my husband was a bit surprised. And when I think that even after he is in grade school, and can tie his own shoes, and take the bus on his own, that I will still need to play a part in making sure things are working optimally it is sometimes daunting. But taking care of things while helping a child grow into their own responsibilities is what parents do, right?

Two words!

Green Hat! Who knew a construction worker's helmet could be so exciting? We were driving by a new group of houses going up near Samantha's preschool, and I pointed out all the diggers doing their  digging. There was a guy with a red hard hat on, and red has been a popular word for Peter lately, so I pointed that out. Then he said "green hat" (sounds more like " eee ha") and I looked, and sure enough, the rest of the guys, and one who had just joined red had, wore green hard hats. This was his first spoken, spontaneous, two word combo :)

Granted, he has been saying two one-word sentences, like Blow. Bubbles. But there has been a pause. He has also signed a word and joined it with a spoken word, like "baaaa" SHEEP, so this not completely out of the blue, but I am still happy, proud and excited that he is starting to use two word spoken phrases.  "Bug Bug school" is another one, and color words paired with a noun are burbling out too.

Peter 's AVT therapist commented on how amazingly well he is doing, and how quickly he moved to two word phrases, with only 8 months of hearing under his belt. I fully credit the use of ASL from day 1 as helping me build a language foundation, especially since the hearing aids gave him no help with speech.  Now that he is hearing I also think our Music Together classes and CD's and even though I don't sing well, my singing random songs throughout the day is helping a lot as well.

If the link below works, it is a short news clip about CI's and music therapy bridging the gap from silence to sound
http://youtu.be/geKdOyJOoA0

I think Peter is doing so well it is time to prune back anything that isn't helping....namely the services offered by the county. The people there are all really nice, but I think I can use those two hours to do something a lot more useful...more on that later. (Later is another new spoken word and sign)

Sunday Cinema

The week just started, and I am already behind!  Here is a quick video update of some new language.

Please know that I delete far more video where Peter says nothing, screeches, or gets distracted! But he is doing well, and we are so proud of him :)

This is "family" words:

I kept trying to get him to say "Nana"!

Nana' s hard work over thanksgiving paid off!

Peter loves his sisters! And the dogs, too?

Thank you!

Holiday Madness, Holiday Gifts

I am so far behind in everything! Not just Christmas, but everything! I just went gift shopping today, hardly anything is wrapped, and still several people will be getting I.O.U.'s in their packages. I still need to clean the house for Christmas Day company, and there are still cards on my table that haven't been mailed. And I have just plum given up on getting any more projects done, or putting out more decorations, or anything really. I was wiped out and sick as the school semesters finished, and it has taken until now to get my feet back under me. But enough of the whining!

I have really wanted to update Peter's word list, and since we filled out The MacArthur-Bates Communicative Development Inventory for our IFSP meeting, it should be easy. But every time I turn around Peter is adding another word! Some in ASL, some spoken, some both! I am so pleased with his progress! And he is starting to put two words together!!! As I saw with my girls, and I predicted Peter would do the same, the phrases are one spoken and one signed word. "More" MUSIC, and "dada" WORK have come out so far, and I can't wait to find out what is next. Peter is really into colors, so I am curious to see if he will use them in a two-word phrase. I have noticed that Peter will start using a word in ASL, then shortly thereafter say it, or try to say it, so I have no problems with him using ASL, since I don't think it is slowing him down any. It just lets him communicate ideas and words before he is ready to pronounce them- like the word ORANGE - he knows it and can sign it, but he is a ways off from saying it. But because I know what he is looking at or wants, I can talk more about the orange train, or the orange light, etc.  It seems to work for us.

On a slightly different note, we got the Naida processors- the behind the ear (BTE) CI from Advanced Bionics. They are small and sleek, though still bigger than the hearing aids were. I think they might be lighter, though. Peter sometimes REALLY likes wearing them, and other times not so much. If there is a risk of throwing (and since I don't have any wig tape yet, that is any time he is being a stinker) I just put the Neptunes back on. Or I have the Neptunes already in his pockets, and pop them on as soon as the Naidas are taken off/shaken off/rubbed off.  I am hoping the better microphone placement and the multiple microphones in the Naidas make for better hearing and easier  hearing. We will see.

Happy Holidays!