The Audiologist - Part III and, "Just Perfect"

We returned to the Audiologist today for another follow up appointment. The intervening weeks were meant, with the help of olive oil, to help clear wax build up in Lauren's right ear. While Dr Lynne could see past the initial build up, she couldn't actually see Lauren's ear drum. With the creative way Lauren's ear canal is shaped, Lynne couldn't actually confirm whether this meant there was more wax further in against the ear drum or she just couldn't see it. Either way, the test results were pretty much the same this trip as last.

Until we can prove otherwise, Lauren appears to have some mild hearing loss. Specifically, she doesn't hear things at low volume and there's one range she has more trouble with than others. Unfortunately, we're still not certain whether this is due to nerve issues or complications. The current assumption is that her right ear is blocked and her left has fluid build up.

Eventually we'll see an ENT but in the meantime, it is suggested we simply speak a bit louder though general speaking volume is fine for most things. It's those quiet moments when we're reading or trying to sooth when Lauren might miss something.

In any other child, Lynne would attempt to clear the wax herself but with Lauren's tiny, twisty little canals, plus the wiggly-squigglies that come with them, she's not comfortable taking that risk. No problem. I wouldn't either!

On the plus side, Lauren had excellent reliability on the tests. Every time she heard a noise, she turned to see the lights and moving animals. If she couldn't hear it, she didn't move. Lynne was really impressed with this part of Lauren's tests. Me too. She picks things up pretty quick.

On an unrelated note, Lauren's independence is really starting to take shape. Today I was in search of blue jeans. All of mine have rips in the knees from hours of child entertainment. Not finding anything suitable pant-wise I promptly moved on to shoes. Who doesn't love shoes? I lowered Lauren to stand along side the shelves while I looked for something suitable for my clod-hoppers. She toodled back and forth, checking out boxes as if helping me look for the right size. Eventually she turned away wandering off in search of something more interesting. Ready to move on, I walked past her and encouraged her to follow. We wandered about until eventually a tag hanging off a shirt on a shelf caught her attention and that was it. She stood there and played while I wandered to and fro, sometimes out of sight then back again.

When I finally gave up hope of finding anything suitable for anything, I offered a Lauren a finger to hold and we walked out of the store. If you can imagine, me at 5' 9" curved over so Lauren at 2' 4" can hold my hand at her proper height... I don't always notice her petiteness but in this instance it was glaringly evident. And adorable.

Last week a social worker we know told of a moment that happened to her. She crossed paths with a tiny girl who looked very young and quite adorable. Just as the social worker was saying, "Well aren't you ..." intending to say "adorable", the mother interrupted with "Perfect. Isn't she just perfect." Turns out the girl was 5 years old.

Lauren is just perfect.

Make that 8 and Caption This...

Lauren had her 15 month immunization appointment today. She, of course, howled like a mean thing trapped in a corner. In addition to mighty cave drawings, her wide mouth yowling revealed, to my complete amazement, TWO molars. Top and bottom on her left side are both in.

Unbe-freakin-leavable!

Counting the other bottom incisor that's pretending to make its way in, we're now up to eight. Still waiting on the top outside incisors but hey? I guess like everything else about Lauren, it'll happen in its own sweet time.

Caption This...

Post a comment and tell us how you would caption this photo of our pumpkin!

15 month milestone

Lauren is officially 15 months old. So often today I found myself thinking and telling her how smart she is. She's picking up new words and surprising me with ones I didn't even know she had.


Like chickadee. "chi-dee" she says. We have a feeder with peanut pieces outside our bedroom. The chickadees are in and out all day. We sat on the bed for a few minutes and watched while I told her "there's a chickadee". "Chi-dee. chi-dee. chi-dee" she says while looking that way and trying make her way closer to the door.

AND she has a new tooth. But not the one any of us would expect - a molar for crying out loud. Seriously. We still don't have all her incisors but she's got a molar. This means 6 teeth. Five fully in, two part way in. No wonder there's been howling and yowling every night.

Stat wise, she continues to hover around 18 1/2 pounds and 27 inches. Her hair is finally starting to grow and it's showing a hint of curl.

The skooch is completely gone. Not once today. In fact, there was one moment I could see her ponder it when the item she wanted was only one skooch away. She had her hands on the floor in front of her planted for the pull then paused, sat back, took another look then got up on her feet instead.

She's been feeding herself and eats everything she can. Today it was pad thai run through the chopper. Chiles, chicken, peanuts and all and she gobbles it down. Plus, if she manages to fanagle it out of me, she loves to use a standard small fork instead of a plastic toddler utensil. She's hilarious to watch holding on to a fork as long as her arm, trying to get it into her mouth. She generally has a lot of success too with hardly any of it ending up on the floor.

She's still a barnacle but she's my barnacle and I am sooooo proud of her.

The end of the skooching era.

Lauren is on the move. Constantly. Where before she would be content to sit and pull toys off the shelf and create chaos around her, chaos now follows her footsteps.

I realized today there has been very little skooching happening. In fact, I am uncertain there has been even one skooch today - not even for something only a butt slide away. She has worked SO hard for this. A girlfriend commented that it shows how good our PT is. I disagree. It shows how hard Lauren has worked and how smart she is. Show her something once, maybe twice and she'll work and work til she's got it figured out.

Lauren has also been surprising me with how open she is to new people. She is still hesitant at first but within 30 to 40 minutes, she's no longer a mama-barnacle. She's playing, chatting, smiling and even visiting with people she doesn't know. People she sees often she'll go to easily and the more often she sees them, the more quickly she warms up at each subsequent visit.

I ponder how much of this is her personality and how much is necessity. She has to see so many different people and new people frequently as a factor of the support for Noonan Syndrome but she is really starting to take it all in stride.

It also thrills me how independent she is. She will play on her own or toodle off to some other room (or out the door and onto the deck) without a care in the world. If Roman didn't end up interfering and inevitably pissing her off, she'd probably be content for a very long periods of time.

Meanwhile, we still have a lot of nighttime issues. Last night was very difficult with Lauren waking and fussing every 5, 20, 40 minutes. No ear splitting screams thank goodness but really uncomfortable no matter what I tried. Finally by 5 am we were done. I tried to manage til 6 before getting Kevin up to help but by 5:40 an entire night of sleeplessness caught up to me. Lauren has been fine today despite the nighttime turmoil but fingers crossed the dose of Advil at bedtime does the trick. We've been trying to reduce the frequency of nighttime pain medication. It's not ideal and we try to alternate Advil with Tylenol and take as many days without anything as we can but repeats of nights like last night aren't good for any of us. Especially me.

People who think we're irresponsible giving our child pain medication need to live with such a child for a while to truly understand.

She is a joy. We are unbelievably lucky and I wouldn't change anything about her... except the sleep thing of course!

The Audiologist, Take II

We've had a wonderful few days. The weather has been unpredictable - chilly, heavy rains then blazing sun - but Lauren and Roman have been fun.

Last Thursday Lauren had her follow-up appointment with the audiologist. Her ability to participate in the tests has really improved in two months. She very quickly learned that when she hears a noise, a fun animal will show and play drums if she turns the right direction. Overall, her results were better simply because she was actually responding to the stimulus. There is, however, one frequency that she consistently did not respond to. At this point, the audiologist isn't able to determine if this is due to wax or fluid build up or if there is a hearing deficiency. There is some visible wax build up which the pediatrician suggested the audiologist could remove. The audiologist, not knowing this, suggested that we could see our pediatrician to help. Nice huh? No one wants to commit to helping my daughter hear better. Actually, I jest. The audiologist was quite up front about not feeling comfortable trying to clear the tiny twisty ear canals of my squirmy worm. I suspect our pediatrician felt the same.

We'll spend the next week and a half treating her with olive oil drops in an attempt to clear the wax and test again. In the meantime, the audiologist asked if we're seeing an ENT. Ironically, our pediatrician had asked the same thing on Monday. I've asked the audiologist to include the recommendation in her report to the pediatricians (she sends them to both our regular doctor and the developmental pediatrician we see through KidsAbility) and we'll go from there.

I'm now at the point where another referral to another specialist doesn't cause any ripples. Who can see a ripple in a tempest? In fact, I'm starting to appreciate it as I learn something new from each one.

I kept replaying my conversation with the pediatrician from last week regarding Lauren's slow growth - her soft fontanel, slow hair growth, slow overall growth and reeeeeeally slow tooth arrival. His comment at the time was that thyroid issues are not typical of Noonan Syndrome, that it's likely simply the slow growth factor of NS and that he'll keep an eye on the fontanel.

I finally realized last night why this still sticks with me. My daughter is MORE than just a girl with a specific syndrome. She is a human being. She is still subject to all the quirky, non-genetic, non-hereditary, mumbo-jumbo disorders that are out there. Just because she has a specific nucleotide variance and an identifiable set of characteristics, doesn't mean those are the ONLY issues she might have to deal with. If she didn't have an indentifiable syndrome, would her issues get the attention they deserve instead of being disregarded as atypical?

What if she is having thyroid issues? What if she does have a hearing deficiency? And her digestive issues. Just because gas pain problems aren't specified in the medical reference books as part of NS doesn't mean they aren't real and therefore caused by something.

So now I'm fired up. We will get answers. If not through our usual doctor then I will find someone, anyone, who can help me work out her puzzles.

PS: We also saw Amy the Physiotherapist who has officially declared Lauren to be walking. Hooray! We have only two more appointments scheduled with Amy, one of which is pending a possible schedule conflict. From there we might not see her again for months at a time. It's a happy-sad kind of moment.

Lauren and the MicroTeen

Normally our blog entries are about Lauren and how she's progressing. Today, it's about Roman.

Currently he is the ultimate MicroTeen.

There was an article in Today's Parent which included "It might help to know that other than the teen years, the toddler years are probably the most rebellious stage of a child’s life.".

With Roman, it manifests itself as unpredictable behaviour. One minute he's giving Lauren rib crunching hugs. The next he's swinging train pieces through the air with the intent to connect with whatever part of her he thinks he can get away with and still call it an accident.

He's desperate to be independent and wants to do everything himself but yet still wants to be a baby, use diapers and be carried. So, a child, at a significant transition period from dependence to independence but at this stage, still in a small body. Hence "MicroTeen". If the cars he's asking for now are any indication, I'm hosed when he gets his driver's license!

I used term MicroTeen flippantly to Kevin and the name has stuck.

At the same time, we are very lucky. He shares even his favourite toys. So long as he has something else, it's okay for her to play. Or course Lauren and Roman have bouts of both wanting the same thing at the same time but usually a little parental redirection for one or the other is all that's needed and they carry on, happy to be side by side.

Sometimes I have flashes of the future. I know there are some rough years ahead for both of them - separately and together. Eventually Roman is going to truly clue in to the additional time and attention Lauren gets because of the complications of Noonan Syndrome. As well, when they're both in school and Roman reaches that age, others are going to point out in that oh so sensitive way how his sister is different.

I can only hope we're instilling the right values and affection in both of them to weather that storm when it comes.

With a house full of germs, the days have gone quickly yet agonizingly slowly. Lauren sees the audiologist tomorrow so we scheduled her 15 month check up early and had it on Monday. I wanted to be able to tell the audiologist that Lauren's ears had been checked and were "insert description here". In this case, one is clear, the other has some wax build up. I've put drops of oil in to help clear it and fingers are crossed for successful tests tomorrow. By successful I mean 'actually completed'.

Unfortunately, Lauren has been in the midst of a vicious period of teething. Her next four incisors are STILL making their way in and the weekend through now has been horrible. Hours of screaming that nothing seems to comfort. Even Tylenol/Advil have met with mixed success. That and the cold she's contracted from her loving older brother have resulted in an intermittent fever and very little sleep for any one. Except perhaps the cats.

The appointment was fine though not as productive as I had hoped. Our pediatrician has always been very helpful and supportive and only occasionally seems to have an off day. Monday, for me, was one of those days. I asked about a number of things including sleep apnea, her slow growth, pain and food issues and had, in most cases, an answer I more or less expected. With some others, it was as though my perspective, as Lauren's mother, was irrelevant. Here's an excerpt of an email I sent to my sister:

"The biggest issue is his recommending we include more fat in Lauren's diet as she's not gaining weight and therefore 'falling off the curve' on the age-weight chart. Duh. No kidding. but she's not getting any taller either so why would we want her to get any chubbier. It doesn't make sense. I guess I wasn't articulate enough in my questioning of this recommendation because he simply kept repeating himself that she should be gaining weight. Arrrgh. This is something I expect he and I are going to butt heads about for a while. I figure if she's not getting taller and she's maintaining her weight or gaining as slowly as she's growing, I'm happy. That said, I fed her some mashed veggies laced with butter for lunch/supper yesterday and she didn't eat as much as she usually does. Felt full sooner. I figure she's going to get the same number of calories regardless, she'll just consume less fatty foods or more non fatty foods depending on what I give her."

In support of that, today she had squash laced with butter and ate two thirds of what she normally would have and didn't eat any of her additional muffins. That said, it could be her teeth dictating her consumption.

The pediatrician recommended we see a nutritionist about Lauren's weight gain which we can do through KidsAbility. This I will do and have already made the call. Lauren's diet is so restricted by her gas issues that the input of a professional would be appreciated. Maybe they will also have some practical insight into Lauren's digestive issues. Currently though she is in the 75th percentile on the Noonan Syndrome height-to-weight growth chart so I'm looking forward to some external support that weight gain shouldn't be a focus for us.

On a huge plus note, our pediatrician offered to talk to colleagues about Lauren's gas problems. We were having trouble communicating exactly what the issue is but he was open to receiving an email describing exactly what we're experiencing. Fingers crossed here too that someone can shed some light on her situation. Even if it is yet another referral to yet another specialist, this one I will take gladly.

There are days, like every day in the past week, where it's hard being the only advocate for Lauren. I am generally very confident dealing with professionals and not afraid to voice opinions. Prior to parenthood, I worked in the ad biz running, among other things, the internet department for a boutique agency in downtown Toronto. When something wasn't right, not doable or simply unacceptable, I had no problem addressing the issue, no matter how politically sensitive.

But somehow doctors have this omnipresence that throws my confidence out the window as if I don't have a right to question their words.

Maybe if I wear my office power clothes I'll do better.

If nothing else, it would give me an excuse to pull out shoes with heels.