CPSE Meeting

Matt signs himself in- backwards "a" and all

We had our annual CPSE meeting for the Matt. The short story is we are not going to have summer services and will resume in the fall, assessing to see if he still requires speech therapy. He is becoming more intelligible over time, though still has some inappropriate errors for his age (darn those missing consonants)!

Anyhow, I'm going into complete brag mode here. Matt is starting to read- he's been sight reading words for a while. Now he is starting to decode some basic phonics (simple three letter words). He floored the special education coordinator. The meeting went something like this:

Hi, let's all introduce ourselves!

[goes around the room, people introduce themselves]

Matt: "hi, I Matt. M-A-T-T Matt."

Special Ed coordinator: "he can spell his name? That's pretty good! He's not even four until December."

Us: "Yeah."

Matt: [writes his name on a piece of paper] "that how you spell it. M-A-T-T."

Special Ed coordinator: "he can WRITE his name?????!!!!"

Us: "Yeah."

Matt: "Your name start with "D." Cyndi name Start with "C." Cyndi is C-Y-N-"

Special Ed coordinator (named Dianne): "Wow. I can hear the artic delay, but my goodness."

SLP: "Yeah, he's the first three year old I've had that uses spelling and reading to correct his speech. His cognitive level is helping us achieve our goals"

Matt: "I like read. S-T-O-P stop. U-P up. Nolan start with N. Why there five people in here? No, there six people in here."

I'm glad we got him out of there before he started showing off his flair for addition!

Because I'm Always Late to the Party

I finally received our copy of "I Don't Believe My Ears," a charity book which benefits the Deafness Research Foundation. Personally, I think the last page is the best. But I'm a tad biased (yes, that is Nolan on the front cover, in the bottom right corner). The book actually came out a while ago, but it took me a while to get it ordered!

In other news, life has been going along swimmingly. Our speech therapist has been out ill, so we have had a week of free play. Things get back to normal starting tomorrow, though! Nolan's right hearing aid also broke. Luckily it is just the battery door, so it shouldn't be an expensive fix. Unfortunately, the battery door is also the on/off switch, so the door popping open is definitely not a good thing. His battery doors also lock to prevent little fingers from getting to the very toxic batteries inside, so the fact that the right one can't lock shut is a problem.

Part of me wonders if the UV light in his Dry and Store made the plastic brittle, but I suspect I just happened to tweak it the wrong way when I was changing the batteries the other day. I love our Dry and Store, so I hope I just managed to wrench the plastic door a little too hard!

Feeding Evaluation

I took Nolan up for his feeding evaluation today. I hadn't received any instructions or paperwork on this little event, so I cleverly packed the boys some food - just in case. Turns out that was a good idea, seeing as how the parents are supposed to provide the food for the feeding evaluation.

Basically, both my boys sat at a little plastic picnic table and ate their lunch in a speech therapy room. For a medical appointment, this is about as fun as it gets. Nolan ate his typical lunch, which was 2 strawberries (cut up into pieces). Then he was done. Yup- that's about as much as the boy ever eats!

The speech therapist tried to get him to eat a piece of sandwich, and he pulled it out of his mouth. Typical Nolan behavior, and I'm glad the SLP was able to see him in a typical eating pattern. He did eat a bite or two of applesauce she brought out, and ate part of a graham cracker.

The really good news is that there is no swallowing problem. Everything that he chooses to chew up gets swallowed completely. Unfortunately, something is at play because most 21 month olds eat more than 2 strawberries for lunch. She looked at the "feeding symptoms" and a few other things (he snores at night, occasionally spits up) and said that his symptoms are typical of a kid with gastric reflux.

The texture aversion and "guarding" behaviors (not letting food into his mouth, or being very cautious with food) are common with reflux kids. I asked what we could do to widen his food repertoire, and she will be sending me some ideas with the written report. She cautioned me, however, that nothing would really work if there is untreated reflux at work. So we need to find out what is going on physiologically before we can treat the behavioral side of things.

The scintiscan is on the 29th, so we will be able to confirm/rule out reflux at that point in time. She also wants the ENT to take a closer look in his mouth, because he snores (apparently toddlers should never snore) and because his speech is a little nasal. Because of the hearing loss, we can't tell if his speech is nasal due to hearing levels (we've never gotten an aided audiogram) or because of a structural issue (like enlarged adenoids).

Goal Time

We are at Nolan's six month review for early intervention. The semi-annual review is fairly informal and just requires an update of goals (no formal testing is conducted). Nolan has met all the goals from his IFSP written at 15 months of age, with the exception of identifying verbs. We've never seen him do this, and if we ask him to point to someone "jumping" or "drinking" he has no clue. Identifying verbs will continue on as a goal.

Since he has met the rest of his goals, we drafted entirely new ones. The new goals are targeting the age of 27 months (the age he'll be at the next review):

• Engage in appropriate conversational turn-taking without additional prompting
• Pronounce the following consonant-vowel combinations 75% of the time: t/d/m/n/p/b
• Nolan will expand his sign language vocabulary
• Identify objects by function
• Answer simple "wh" questions
• Will ask simple questions
• Will auditorilly discriminate sounds in structured activities from a field of six
• Will identify and use age appropriate descriptive concepts (big/little, wet/dry, etc)
• Will identify 15 verbs by pointing to pictures

Nolan seems to be flying through most of his goals, so I'm sure he'll meet these new ones in short order!

ENT Visit

We headed up to Buffalo for a routine ENT check-up. Kids with hearing loss see an ENT on a regular basis to make sure the middle ear is as healthy as it can be, since fluid or ear infections can make a sensorineural hearing loss worse.

The left ear has a patent tube and looks great- no fluid, no wax, no infection.She took a look in Nolan's ear and confirmed the right PE tube was out, and that there was a lot of wax in that ear. She did a tympanogram on the right ear and the eardrum is a little stiff. After further investigation, the stiffness is not caused by fluid. I'm guessing the bad infection/perforation and two sets of PE tubes may have caused some scar tissue- hopefully the "stiffness" isn't enough to affect the hearing in that ear. Still, I'm thrilled because no fluid means no third tube and no adenoidectomy.

I did mention the possible PUV's and scheduled cystoscopy to the doctor and nurse, and that I was still concerned about his lack of appreciable weight gain. She entered the information into her computer and did the usual "mm-hmm" response.

Then she went to clean out his right ear (this involves a papoose board and all sorts of unpleasant metal funnels in the ear). After doing this, she checked his records again and saw that the ENT office hasn't taken an official weight since October 2007. She told the nurse to get a weight on him, then set us up for a 4 month appointment.

The nurse took his weight, furrowed her brows, then sent us back to the exam room. The ENT came back in, took one look at his growth chart, then proceeded to freak out. In a very professional, medical manner, of course. Apparently, seeing a drop from the 60th% to the 3rd% line makes more of an impact than the mom telling the doctor that he's only 21 pounds at 21 months of age.

A yummy cookie. If only he'd actually eat the whole thing!

After asking us if the pediatrician had started up a fail-to-thrive evaluation (um, nope!) and having me fill out another symptomology sheet, she set us up for a feeding evaluation at children's and a scintiscan to check for gastric reflux. Apparently, pulling food out of your mouth, refusing food after the first two bites, spitting up occasionally at the age of 21 months, and being very texture sensitive are indicative of a feeding disorder.

They're sort of treating it as an emergency and have us in for the feeding evaluation on Tuesday. There is a part of me that finds this rather ironic- he's been technically in the "failure to thrive" camp for EIGHT months. I have mentioned the weight issues like, um, Every. Single. Time.

The ENT is a tad concerned that this bizarre constellation of symptoms might be indicative of a syndrome. We've been there, done that before. It's more likely just a bizarre constellation of symptoms. .

For now, we have a bazillion appointments at Children's for the reflux evaluation, feeding evaluation, and cystoscopy. Hopefully it is just reflux and a little Zantac will help him put on the weight.

Tagged-5 Wonderful Things About Motherhood

Exploring a tidepool

I was tagged by Lucas's mommy for a meme: 5 things that make me love motherhood. I wish I were clever enough to put together an acrostic, but Matthew doesn't have 5 letters and I can't leave him out of the fun!

1. Exploration: I had forgotten that dandelions were so much fun to blow. That maple seeds not only make great helicopters, but also stick to your nose when you peel them apart. I had stopped taking notice of twinkling stars, crawling ants, and upside-down images in raindrops. Now that I'm a mother, my children constantly explore and bring back that sense of awe over things adults consider mundane.
2. Insanity: Not for my own state of mind (though that might be more appropriate at times), but for the craziness that is innate to toddlers and preschoolers. Case in point: riding half-naked down the driveway on his tricycle (Matt did remember his sunglasses, at least), Nolan running in circles and laughing so hard he snorts, and taking their trucks for a walk with the two cat leashes we own. The kids provide so much entertainment value that we often wonder what we did before we had kids.
3. Nighttime: After all the craziness of the day, that final snuggle in bed with a book and whispered questions and prayers bring a sense of calm and security like no other. And while I hope he sleeps through the night soon, I secretly love the fact that Nolan still wakes up in the middle of the night and climbs into our bed. He sighs and snuggles as close to me as he can get- a sort of "power cuddle."
4. Mornings: I have never had a greeting so filled with enthusiasm as the one I get from my children in the morning. I am greeted with running feet, open arms, and cheers of joy. Sure, they're really only happy because they are getting a banana and cereal. But their glee at seeing my eyes open makes me feel like a rock star.
5. Connectivity: The boys share traits from so many family members- some still with us, and some who have passed on. Matt's irreverent streak reminds me of my beloved Grandad. Who isn't with us anymore. He left a little twinkle of himself in that gorgeous boy of mine, though. Both boys are a little stubborn- they get this from their father. I get to see a little bit of what my husband might have been like as a little boy. Nolan is sensitive and gentle- I see my mom in him. Matt loves tractors. I think a part of my husband's grandfather left its mark there. And every time my boys take things apart (which is often), I see hints of their grandpa and uncle- who are both engineers. The boys bring our larger, extended family together in wonderful ways.

I'm supposed to tag 5 moms to complete this. I always feel guilty about doing that, so don't do it if you don't want to! I'm tagging Herding Grasshoppers, Live Laugh Love Family, Orange, No Small Thing, and OllieandErickaPlus3. Mostly because I think they may not hate me for tagging them!

Nolan's Magazine Debut

Our local Jr. Deaf Club was featured in Odyssey Magazine, and Nolan has a picture in the article! The magazine is here. You'll have to download the PDF file and then scroll to the article (For Information and Fellowship, Deaf Club Eases Isolation)by Karen Lindeman (a local teacher of the deaf in our area).

A Problem I'm Ecstatic to Have

Nolan, washing rocks in a bucket. Hey, it keeps him entertained!

We have stumbled upon a new problem during speech therapy. Nolan never quiets down! He talks incessantly from the second our SLP arrives to the moment she leaves, barely taking a moment to breathe.

How can this be a "problem," you ask? Well, he never stops blathering on to listen to what the question is or to pay attention to the current activity! An example would be:

Nolan: BALLOON! Balloon! I want balloon! I see ball! I want ball!

SLP (trying to get a word in edgewise): Yes, Nolan. Can you get the blue square and put it on the peg?

Nolan: Ball! I want ball! Cow! I see cow! Doggie! Doggie woof woof!

SLP (trying to go along with Nolan): Yes, the doggie says woof woof. Can you find the BIG doggie?

Nolan: Duck! Duck quack quack. Milk. I want milk. Want cup!! Want Matt. Weeee!

He is now talking so much that we're going to create a goal for conversational give-and-take in his next IFSP. We're writing another goal for Nolan to stop and listen, and respond appropriately to questions.

I can't help but be thrilled at our new "problem." The kid loves to talk. Now we just need to teach him to stop and listen to us!

Just When You Start to Worry

We were starting to get concerned about Nolan's receptive language again, because when you ask him "what does the doggy say?" he'll respond, "doggy say." He doesn't answer the question, but simply imitates the last portion of the question. He still does this, but last night we had a little conversation at the mall that proves his receptive language is coming along just fine.

Me: Nolan, it is time to go home now.

Nolan: Nooooooo!

Me: Yes, we're going out to our car and we're going home.

Nolan: "No! That way! Go that way!" He turned and pointed to the quarter style rides.

OK, it sounded more like: "No! At ee! Dau at ee!" But still, I'm impressed.

I guess his receptive language is really OK after all!

Keeping the hearing aids in is still a major problem. I did call our audiologist to schedule a hearing test, though I don't believe his hearing level has changed. His speech and response level seems to be about the same, so I have a feeling we are simply dealing with a toddler who wants control!

We handle the episodes of aid-yanking very calmly. The first time he pulls them out, we say nothing and replace them immediately. Sometimes he leaves them in for a few more minutes. More often, he yanks them out again. On the second "yank," we check the aids to make sure the battery is working (check for a squeal). then we replace them again. If he yanks them a third time (common), we give him a 10 minute break before replacing them. Some days he will continuously yank them out and nothing will work. Other days he'll finally accept them and we go on with our merry routine. We never get more than 40 minutes of aid-wearing in a row, but hopefully with persistence and patience we'll see more compliance with the aids in a few short months!

Keeping Those Darned Things In!

Nolan, showing off his excellent aid-removal skills for our SLP

Nolan has figured out how to circumvent the pilot cap. It gives us a head start, but doesn't keep those agile fingers from ripping out his aids. We also have a great little clip from Oticon that has an elastic band that goes around the hearing aid case. The clips worked wonderfully until last week.

I am proud to announce that Nolan is a prodigy- when it comes to fine motor skills! That little rascal has figured out how to remove that clip, the hearing aids, and disassemble all hearing aid parts in less than 30 seconds.

First, he reaches up under the pilot cap and yanks the earmolds out of his ears. Then he pulls on the lanyard until the clip disengages from his shirt. He pulls the whole thing down and out, then pulls the elastic bands off the BTE cases. As a final act, he rips the earmolds off the tubing and tosses them as far as his little arms can throw. Which turns out to be pretty far.

Our SLP demonstrates her excellent hearing aid replacement skills

I am no longer frustrated by this behavior. Just weary of it. We want to keep Nolan's aids a positive thing and avoid power struggles, but at the moment he is only wearing them for a few short hours out of every day. The tubing is now torqued because he has ripped the earmolds off so frequently.

I heard, once, that the hearing aid struggles decrease by the age of two. I can only hope.

Urology Consult

We visited the urologist yesterday and he told us that the blockage could be one of three things:

1. there is no blockage and the pediatrician and staff at our local hospital just couldn't place the catheter because they're not as experienced at it.
2. There is a congenital stricture (very rare)
3. He has PUV's.

Because options 2 and 3 are rather serious, we need to investigate. He also wants to complete a VCUG (which we weren't able to do before) becuase of the family history of urinary reflux.

He didn't try to place a catheter today because Nolan's been through so much already. He gave us two options for investigating the problem:

1. Do a VCUG while he is awake, and if they can't place the catheter then they'll call down urology. Then if urology can't place the catheter, we'll have to come back another day to do a procedure while he's put under anaesthesia.

2. Do a cytoscopy under sedation to view any possible problem. If a problem is found, they'll fix it right then. If no problem is found, they'll place a catheter under sedation and then wait for him to wake up, then do a VCUG.

We chose option 2, since we've tried option 1 at our local hospital and it didn't work out. He agreed this was probably the best course of action, and we will be scheduling surgery soon. Hopefully they won't find a problem, but even if they do they will release him the same day. So at least there is no overnight hospital stay. If they do find PUV's and ablate them, he'll have a catheter placed overnight and that will have to be removed the following day, but he'll still be allowed to come home. The nurse will call me next week to schedule the procedure.