It's been over 2 years since we started therapies. We are lucky to have a spectacular team of therapists who love Maya dearly, and I consider to be surrogate family members. But we went through a few others before we had our perfect team, and before I forget what the beginning was like, I thought that I should write this stuff down. So, here are my thoughts for the therapists, from the beginning.
Come on in, stranger.
Welcome to my shambles.
My sweet, beautiful, wonderful child has just been through a series of evaluations specifically designed to figure out exactly where she doesn’t quite measure up. Then I got to read about her shortcomings (quantified . . . lovely. How lucky are the parents who never get to know their child’s percentile ranking on their worst skills). I sat before a scary official who’s primary goal is to keep costs low, and I fought to get as much therapy as possible . . . I have no idea what you all will do, but figured that “more” = “better”.
And here you are.
And I can’t help but slightly resent you (Just scheduling this initial meeting was challenging enough. I don’t want this for my kid. I want to be at the park, or the zoo. Not here.) and have all of my hopes pinned on you at the same time.
Please help her.
Please help me to help her.
We’re going to spend the next few years together, for better or worse. So let me share a few thoughts right up front----
First, the basics. Timeliness. You might be of the mind that 5-10 minutes late isn’t really “late”, it’s basically on time. I am not of that mind. Here’s why. I will always have my child ready for you 5 minutes early . . . so, if you are 10 minutes late we will have spent the last 15 minutes waiting around talking about your arrival. Also realize that we have 2 other appointments today . . . I knew that we had exactly 35 minutes between our last session and your arrival, which was, sadly, not enough time to get to the playground, so instead we had to settle for a quick snack and a walk around the block. Had I known we would actually have 10 extra minutes, we would have had time for the playground. I could have talked to neighborhood mom friends, and she could have played like an average kid. But here we are, sitting in the living room and watching the clock tick and getting more sad and frustrated with each passing minute that we could have been doing anything-other-than-waiting-for-you.
If, for whatever reason, you are running late, please let me know. If you are supposed to arrive at 3:30, texting me at 3:33 is not letting me know. It’s better than nothing, but only slightly.
And for the love of all that is good, if you arrive late you better be staying late. I don’t care if you have another appointment right after us. If you arrive 5 minutes late and leave on time, I will question your devotion to my child and think that you are just trying to pass the time.
Next, involve me. You have the therapeutic knowledge, and I have the knowledge of my kid. Let’s work together. If you ask me “Hey, are you open to taping her hands? Here’s why I think it would be a good idea . . . what do you think?” I will be open-minded and work with you. If you tell me “I’m going to tape her hands”, I will feel bossed around. Remember, we currently have 5 therapists, and each of you has your own agenda (and don’t even get me started on the doctors). Please let me be the mom and make decisions for my child, even if sometimes we don’t see eye to eye. If you let me be involved in the plan, I will be much more likely to go along with your ideas, because I will trust you.
Thirdly, I will ask a lot of questions. I will learn to watch my child and make mental notes, and hit you with a list of questions. (“Why does she move her tongue like that?” “How can I get her to unclench her thumb?” “ Is there a way to position my hands to help her balance better?”) I will not expect you to know every answer, but I would greatly appreciate it if you could help me find them. A simple “Hmm. Let me talk to my colleague and get back to you on that. We’ll figure something out.” will make me indebted you---you listened to me, admitted that you’re unsure, and committed to trying to learn more about how to help my kid. I will love you for this.
Finally, above all other things . . . please love my child. Or at least pretend that you do. I am scared for her, and I feel like we’re alone. I worry about if people will understand her, or put in the effort necessary to do so. I worry about whether people on the street will look at her differently. I worry about whether she’ll have friends.
You, therapists, are her first friends. She’ll learn to expect one of you when the doorbell rings, and (hopefully) she’ll get excited when she realizes that you’re here.
You’re the first people that she gets introduced to, and I’m nervously hoping that you’ll offer her smiles and hugs and encouragement.
If you love her, her days aren’t filled with “sessions”, they’re filled with “playdates”. She will have fun and learn and grow, and I will be eternally grateful that a) you are helping her and b) she is none the wiser. I want to think “she’s so lucky to have all of these great therapists coming to shower her with attention!” and not “poor kid, never gets to play with other kids because all we get to do is therapy.”
Friday, May 13, 2011
Food fight (Mom vs. Toddler Tantrums)
Holy Screaming Tantrums
On Monday, Maya had her first ever true tantrum . . . like, the real deal. Over 20 minutes (23, to be exact), mostly filled with absolutely hysterical, high pitched screaming, giant tears . . . the whole 9.
The cause? Mango. Who would have thought that tiny, delicious, yellow pieces of fruit could cause such a breakdown.
The Background
One of my biggest goals right now is to expand Maya's food repertoire. I want her to start school with a diet that's more extensive than yogurt, meatballs, and cereal bars. She has the jaw strength and chewing ability to start trying more stuff, and I need to make it a priority to make her (wo)man up. With fruit season upon us, fruit has been goal #1.
Maya is also a much safer eater now---she's fully mastered how to use her tongue to thrust unwanted food out of her mouth, which is a mixed blessing. It's fantastic in that I don't have to be quite aspanicked concerned with her possibly choking, but it's infuriating frustrating because she just spits things back at us over and over again. (And sometimes she thinks it's hilarious, too.)
So, back to the tantruming . . .
On Monday, she got into the high chair for a snack. When I presented the mango (which she had eaten, and enjoyed, earlier in the day) she starting having a fit and signing for milk. I told her "First 2 pieces of mango, then milk." Then she totally lost it.
I had already said "2 pieces, then milk." So now I was stuck. I taught middle school, I'm semi-well versed in children . . . if you say something, you have to mean it. (Sometimes I wish I could tell this to the folks I see at the playground who issue 37 "If you throw that sand again, we're leaving, Johnny!" warnings. I want to tell them "If you say that, you best be ready to hit the road. Otherwise, please don't say it. At this point Johnny, his friends, and half the parents here think you're a joke. And good luck the next time you try to issue an ultimatum, sister.")
So after 23 minutes of tears, she ate 2 pieces of mango and got her milk. She was sweat soaked, I felt terrible, but we all survived. When I tried the process again on Tuesday, there were still tears, but it only took 12 minutes and never reached the scream-like-a-banshee decibel level of Monday's showdown.
And then we took the show on the road
Without a doubt, the better the motivation (like the milk she loves so much) the more likely it is that she'll eat quickly. So this morning (and yesterday) I packed up some blueberries and we walked to the playground. My plan was simple: she needed to eat 2 blueberries before she could get out of the stroller and play at the playground. I was fully prepared to sit there for up to 40 minutes with her in the stroller, calmly saying "Do you want to go play? Ok, then you just have to eat 2 blueberries." every so often, until she either ate them or the clock ran out and we left. (I'm not sure if this seems mean. But she's got a good memory, and after a few not-getting-out trips I knew she would cave.)
After 13 minutes of sitting in boredom this morning, I changed the ultimatum---instead of "If you want to get out, you need to have 2 blueberries" it became "Do you want to leave? If not, you have to have 2 blueberries." She started to cry. I decided to take out my cell phone and start taping:
Some translations, if you're curious: At 0:29, she's saying "bye bye?!". At 0:51 I'm telling her "chew chew" because she's been getting scared of the fruit textures and forgetting to chew & swallow. At 0:54 I'm pulling her hand away because when she starts to get nervous she will take the food out of her mouth and throw it. 1:35 is signing "all done". The hand twisting at 1:38 is signing "play".
She's so smart . . . we've definitely crossed a bridge, past the brute force phase (sometimes we just had to muscle in whatever food we could) and into the logical reasoning phase.
What I've learned so far
This feeding stuff works much better if I have enough time set aside to wait her out. When we have to grab a quick snack between therapies, I need to stick to something that she won't fight. And when she is ready to fight, I have to channel my calm inner teacher and let it roll off my back, instead of getting emotionally involved.
The rest of our time at the playground . . .
. . . was super fun for us, but less so for Parker. I left him sitting outside, where he kept watching for us like a watchdog. Maya visited him a few times to cheer him up:
On Monday, Maya had her first ever true tantrum . . . like, the real deal. Over 20 minutes (23, to be exact), mostly filled with absolutely hysterical, high pitched screaming, giant tears . . . the whole 9.
The cause? Mango. Who would have thought that tiny, delicious, yellow pieces of fruit could cause such a breakdown.
The Background
One of my biggest goals right now is to expand Maya's food repertoire. I want her to start school with a diet that's more extensive than yogurt, meatballs, and cereal bars. She has the jaw strength and chewing ability to start trying more stuff, and I need to make it a priority to make her (wo)man up. With fruit season upon us, fruit has been goal #1.
Maya is also a much safer eater now---she's fully mastered how to use her tongue to thrust unwanted food out of her mouth, which is a mixed blessing. It's fantastic in that I don't have to be quite as
So, back to the tantruming . . .
On Monday, she got into the high chair for a snack. When I presented the mango (which she had eaten, and enjoyed, earlier in the day) she starting having a fit and signing for milk. I told her "First 2 pieces of mango, then milk." Then she totally lost it.
I had already said "2 pieces, then milk." So now I was stuck. I taught middle school, I'm semi-well versed in children . . . if you say something, you have to mean it. (Sometimes I wish I could tell this to the folks I see at the playground who issue 37 "If you throw that sand again, we're leaving, Johnny!" warnings. I want to tell them "If you say that, you best be ready to hit the road. Otherwise, please don't say it. At this point Johnny, his friends, and half the parents here think you're a joke. And good luck the next time you try to issue an ultimatum, sister.")
So after 23 minutes of tears, she ate 2 pieces of mango and got her milk. She was sweat soaked, I felt terrible, but we all survived. When I tried the process again on Tuesday, there were still tears, but it only took 12 minutes and never reached the scream-like-a-banshee decibel level of Monday's showdown.
And then we took the show on the road
Without a doubt, the better the motivation (like the milk she loves so much) the more likely it is that she'll eat quickly. So this morning (and yesterday) I packed up some blueberries and we walked to the playground. My plan was simple: she needed to eat 2 blueberries before she could get out of the stroller and play at the playground. I was fully prepared to sit there for up to 40 minutes with her in the stroller, calmly saying "Do you want to go play? Ok, then you just have to eat 2 blueberries." every so often, until she either ate them or the clock ran out and we left. (I'm not sure if this seems mean. But she's got a good memory, and after a few not-getting-out trips I knew she would cave.)
After 13 minutes of sitting in boredom this morning, I changed the ultimatum---instead of "If you want to get out, you need to have 2 blueberries" it became "Do you want to leave? If not, you have to have 2 blueberries." She started to cry. I decided to take out my cell phone and start taping:
Some translations, if you're curious: At 0:29, she's saying "bye bye?!". At 0:51 I'm telling her "chew chew" because she's been getting scared of the fruit textures and forgetting to chew & swallow. At 0:54 I'm pulling her hand away because when she starts to get nervous she will take the food out of her mouth and throw it. 1:35 is signing "all done". The hand twisting at 1:38 is signing "play".
She's so smart . . . we've definitely crossed a bridge, past the brute force phase (sometimes we just had to muscle in whatever food we could) and into the logical reasoning phase.
What I've learned so far
This feeding stuff works much better if I have enough time set aside to wait her out. When we have to grab a quick snack between therapies, I need to stick to something that she won't fight. And when she is ready to fight, I have to channel my calm inner teacher and let it roll off my back, instead of getting emotionally involved.
The rest of our time at the playground . . .
. . . was super fun for us, but less so for Parker. I left him sitting outside, where he kept watching for us like a watchdog. Maya visited him a few times to cheer him up:
Hi, friend.
Tuesday, May 10, 2011
I'm no writer, but this guy is
I've tried three times to start this post. The first time I even typed out something that was a few paragraphs long, then I deleted it. Ironically, I'm trying to write about how I'm not a writer.
This blog was started to fill friends and family in on my pregnancy, then to share pictures of Maya, then to also share medical stuff as it unfolded, and then I added some of my thoughts to it. The things you read here sound like my thoughts . . . I'm informal, I don't follow grammar rules (due to a combination of simple ignorance and willful ignoring), and I have a tendency to-do-this-thing-with-the-dashes when I don't know how to make a rambly thought not turn into a run-on sentence that leaves a reader lost in the middle, thinking "huh?".
I'm unpolished. And often I look back on posts and think "Argh! Why didn't I use a different adjective there? Or add in a few sentences about xyz?"
Every so often I come across a blog post that inspires me with it's ability to get things out in a simple, clear, vivid and compelling way. And so it was when a friend (Thanks, Kris!) sent this my way last week.
This post, along the lines of "spread the word to end the word", is fantastic. (It also makes my humble post on STWTETW day look, well, mightily inferior, but que sera sera.)
Please take the time to read it. The author puts into (beautifully crafted) words the exact sentiments that I, and many others, feel.
If you have a family member with special needs (or work with people with special needs) and hate the word "retarded", this post will have you nodding and saying "Yes! That is how I feel. Thank you for putting it in better words that I can."
If you're of the I-hear-what-you're-saying-and-I'm-sorry-it-hurts-you-but-really-it's-just-a-word mindset, I really and truly believe that this post will give you a type of insight and perspective that will be eye opening.
(Just in case you can't see the hyperlink on your screen, here's the direct link to the post, on Robert Rummel-Hudson's blog, Fighting Monsters with Rubber Swords: http://www.schuylersmonsterblog.com/2011/05/just-word.html)
This blog was started to fill friends and family in on my pregnancy, then to share pictures of Maya, then to also share medical stuff as it unfolded, and then I added some of my thoughts to it. The things you read here sound like my thoughts . . . I'm informal, I don't follow grammar rules (due to a combination of simple ignorance and willful ignoring), and I have a tendency to-do-this-thing-with-the-dashes when I don't know how to make a rambly thought not turn into a run-on sentence that leaves a reader lost in the middle, thinking "huh?".
I'm unpolished. And often I look back on posts and think "Argh! Why didn't I use a different adjective there? Or add in a few sentences about xyz?"
Every so often I come across a blog post that inspires me with it's ability to get things out in a simple, clear, vivid and compelling way. And so it was when a friend (Thanks, Kris!) sent this my way last week.
This post, along the lines of "spread the word to end the word", is fantastic. (It also makes my humble post on STWTETW day look, well, mightily inferior, but que sera sera.)
Please take the time to read it. The author puts into (beautifully crafted) words the exact sentiments that I, and many others, feel.
If you have a family member with special needs (or work with people with special needs) and hate the word "retarded", this post will have you nodding and saying "Yes! That is how I feel. Thank you for putting it in better words that I can."
If you're of the I-hear-what-you're-saying-and-I'm-sorry-it-hurts-you-but-really-it's-just-a-word mindset, I really and truly believe that this post will give you a type of insight and perspective that will be eye opening.
(Just in case you can't see the hyperlink on your screen, here's the direct link to the post, on Robert Rummel-Hudson's blog, Fighting Monsters with Rubber Swords: http://www.schuylersmonsterblog.com/2011/05/just-word.html)
Sunday, May 8, 2011
We beat the plague and celebrate (with a cow, too)
We're now at a full day with no fever (and 2 days without a high fever) and I'm feeling relieved at finally turning the corner. Getting Maya back on solid food is likely to be a week long battle (as she's happily transitioned to a diet composed solely of milk, water, applesauce, yogurt & chocolate pudding), but at least the fever is gone and she's on the road to normal.
We celebrated with a fabulous feeling-better-and-it's-Mother's-Day-too! weekend . . .
Saturday . . .
We go to Stew Leonard's, which never disappoints. This time they have some sort of kids club thing happeneing outside, complete with snacks, hand painting, and . . . a calf!
We celebrated with a fabulous feeling-better-and-it's-Mother's-Day-too! weekend . . .
Saturday . . .
We go to Stew Leonard's, which never disappoints. This time they have some sort of kids club thing happeneing outside, complete with snacks, hand painting, and . . . a calf!
A baby cow?!
I'm going to come get you, baby cow.
True love. Note the cow trying to lick Maya---I think the feeling is mutual. (Also, note my death grip---I've seen Maya's "gentle hands" with Parker, and was afraid she might try to love the cow to death.)
I think she was debating a big kiss on the nose.
I'm going to kiss you!
One big snuggle for the road :)
We become the hand painter's favorite client of the day when I request . . . not a princess, not Spongebob, not a tiger, but a white circle. It's the moon. Maya is obsessed with the moon (ever since we took her outside with friends back in March to see the "Super Moon").
And on Saturday night I made a big fancy Mother's Day dinner. It may have been one night early, but I was excited to splurge on nice food and spend some time in the kitchen after spening most of the week sick. So I bought the food I wanted, the flowers I wanted, and the good local beer I wanted and made up a nice meal:
Why not take a picture of dinner? This was steak, potatoes, bok choy, garlic green beans, and tomato/onion salad. I didn't get a picture of the amazing dessert, but it was equally wonderful.
Sunday . . .
I went out shopping alone, and Dave & Maya went to the zoo. While it was nice to have a little break from toddler mom duties, I quickly became a little lonely (and remembered that I hate shopping). So I went home, grabbed Parker, my book, and an iced coffee, and laid out a blanket at the park instead.
That's much more my speed.
The afternoon brought trips to 2 different playgrounds, walking around the neighborhood, and take-out Thai food from my favorite local place.
Maya was delighted to find a stopped up, filled-with-muddy-sand water fountain at the second playground.
Hey, you! Come here! You've got to see this!
Successfully dirtying other playground children.
She may have also had a grown-up partner in crime.
It was a perfect return-to-health/Mother's Day weekend :)
Happy Mother's Day to all of the moms out there! Especially to my mom (Maureen), sister (Lisa), mother-in-law (Helaine), and sisters-in-law (Anne, Laura, & Lori).
Friday, May 6, 2011
The plague, and giveaway winners!
Battle weapons: tylenol, ibuprofen, tissues, thermometer, fever/medicine chart, my antibiotics, Maya's antibiotics
It's been a long week.
Maya has had a fever since Monday (and still going) and I had one from T-Th. Now we're both on antibiotics (it seems like bronchitis for me, a sinus infection for her) and I'm really hoping that she'll be fever free tomorrow. I really hope that whatever she's fighting is bacterial and the abx make a difference tonight . . . poor kid.
Without further ado . . . the giveaway winners . . .
(There were 46 comments left on the giveaway post. Winners were selected using this random number generator.)
(drumroll . . . . . . . . . . . )
( . . . )
( . . . )
Winner #1: Comment #41
Kathryn@ExpectantHearts----that's you! You get to chose your prize. Please email me at uncommonfeedback@gmail.com with your mailing information and your choice of prize!
Winner #2: Comment #30
Candice, that's you! You will get the prize that Kathryn doesn't pick----if, for whatever reason, you do not want the second prize, I will pick a new random number winner for that prize. Please email me at uncommonfeedback@gmail.com with your mailing information, and I will write back to you once I hear from Kathryn!
Thanks everyone who entered. Giveaways are fun :)
Wednesday, May 4, 2011
Blech. And a bonus giveaway entry.
Maya is sick. I'm sick, too, but that doesn't seem to matter much. She's little, and her fever is higher than mine, so she gets all of the pampering. This morning I awoke to hearing her scream from the crib (which was terrifying) and when I ran in and took her temperature it was 104.8. Yikes, dude. Scary stuff. It seems to be just a virus, and hopefully tomorrow will be much better.
For the past two days, there has been a lot of this:
And a very few bundled-up outings, too:
Lucky for her, she's been very stylish throughout this illness because the other day I gave her her very first little manicure:
For the past two days, there has been a lot of this:
And a very few bundled-up outings, too:
At the dog run, in between fevers.
Lucky for her, she's been very stylish throughout this illness because the other day I gave her her very first little manicure:
They're blue---blue is her favorite color, she picked it out at CVS
2 days left for the giveaway! I already laid out the 4 different ways to enter, but I thought of a 5th! You can leave an extra comment on the original giveaway post if you share the giveaway link ( http://niederfamily.blogspot.com/2011/04/giveaway.html) on FB (or if you email it to someone, that way the non-FB folks can get a bonus one too).
Monday, May 2, 2011
A girl and her dog
Two cute Maya & Parker moments from the past week:
Maya's eating has been bad again. Combine poor eating skills with the terrible two's (or 3's) and we've had some projectile food recently. And when you have projectiles, you sometimes have casualties:
Is Maya evilly rubbing her hands together?
Direct hit! There's a meatball chunk right next to Parker's body (and some ketchup on him, although you can't see it) . . . and another meatball chunk about a foot away.
I'm not allowed to eat it, so I might as well go back to sleep.
And a day or two later . . .
Mommy, this is my doggie!
Parker, I have to tell you a secret.
Ok, now you tell me a secret!
A kiss for my buddy.
And a snuggle, too.
Did you see our big giveaway?! Enter, enter, enter! You can have up to 4 entries. Even if you're not a parent of a child with special needs, you may know someone (a parent, a teacher, a therapist, etc) who would love to receive a thoughtful gift. (If you don't feel comfortable entering on their behalf, send along the link!)
Any other questions for me? I've gotten several and will likely be writing the post later this week.
Friday, April 29, 2011
A Giveaway!
A while back a friend of mine pointed me towards an online store that she thought I'd like, and she was spot on. Check out my new shirt:
A mug featuring the A Super Advocate design. First off, who doesn't need a mug? Second, while you drink your coffee/tea/water/whatever, you will recognize your awesome advocating self and smile.
A beautiful large framed print of her "Celebrate Diversity" design. (Specs here). I asked for a mug, Colleen sent this too---how generous is that :) Let me say, this is really nice---it's a great design, vibrant and colorful, and beautifully framed. You could hang it at home, or in your office, or it would make an amazing gift to a school or therapy center (and you would be their new favorite client, I think.)
Here they both are together:
Seriously, how long will it take me to remember that mirrors make words go backwards?
There you go.
Look at me! I'm a Super Advocate! Considering that I came across this shirt when I was neck deep in insurance battling, it seemed all too perfect for me. Then I thought about IEP stuff, research projects, scheduling battles, rude receptionists, etc etc. I am a super advocate . . . and I bet that a lot of you readers are, too :)
So I ordered myself that shirt, thought about you guys, and decided to get in touch with the shop owner, Colleen Tomko. I told her that I knew a group of people (that's you guys) who I thought would love her designs, and asked whether she would be interested in doing a giveaway, and then she jumped on board. Little did I know that she would send me not 1, but 2 great prizes!
First things first, just so you know: I'm not getting anything out of this. I paid full price for my shirt, I didn't get any kickbacks, and I don't know Colleen. I just thought that a lot of you would dig her designs, and also, giveaways are really fun.
Now that that's clear, check out the store: Her store, The Parent Side, is pretty darn cool. The designs are clever, humorous, colorful, and catchy. I bet you'll see something that makes you smile.
Here are the giveaways!:
A mug featuring the A Super Advocate design. First off, who doesn't need a mug? Second, while you drink your coffee/tea/water/whatever, you will recognize your awesome advocating self and smile.
A beautiful large framed print of her "Celebrate Diversity" design. (Specs here). I asked for a mug, Colleen sent this too---how generous is that :) Let me say, this is really nice---it's a great design, vibrant and colorful, and beautifully framed. You could hang it at home, or in your office, or it would make an amazing gift to a school or therapy center (and you would be their new favorite client, I think.)
Here they both are together:
So now that you totally want this awesome stuff . . . here's how to enter the giveaway. Pay attention, because you can enter up to 4 times!
1. Leave a comment on this post. Any comment will do . . "Hey, I want to win!" "Giveaways rule" "Maya is awesome", etc :)
2. Go to The Parent Side and check out Colleen's different designs (there's a list on the left titled "Browse Designs"). Then, leave a comment here telling me which design is your favorite.
3. Like our page on Facebook ("Uncommon Sense Blog") if you don't already. Then, leave a comment here that says "I'm a Facebook follower!" (If you're already a Facebook follower, you can leave this comment too, of course.)
4. Like The Parent Side on Facebook ("The Parent Side"). Then, leave a comment here that says "I'm following The Parent Side on Facebook!"
*Remember to leave a separate comment for each entry!
Giveaway winners will be announced next Friday, May 6th, after 5pm EST. First number pulled will get to choose their prize, and the second winner will get the remaining prize. If the second winner declines the remaining prize, I will pull a third number, etc.
And whether you win or lose, do check out the store. She has a lot of fun stuff :)
Thursday, April 28, 2011
Lose-Lose (Subtitle: Maya's mysterious ears)
A month before Maya turned one, she had her adenoids removed. (She was so innocent and little!)
Two months before she turned two, she had ear tubes put in. (She was semi-innocent and semi-little.)
And soon she'll be 3 (May 30th---it's coming so soon!). I was really excited when I realized that this would be the first year that she wouldn't be sedated for any procedures . . . except now she will be. Not until after her birthday (we don't have a date yet, but it's looking like July-ish) . . . but this will be a big one, somewhere between 1.5-2 hours of sedation.
:(
She'll be having an ABR (hearing test) done. She actually already had one done . . . back when she was itty bitty (12 weeks). Here is her full, confusing, unclear hearing story:
At birth, Maya failed the newborn screening in both ears. She had some fluid issues during delivery, so we thought he ears might just be gunky. Before we were discharged they re-screened her and she failed in the left ear, passed in the right.
Two weeks later, we went to the hospital to get rescreened. Again, she passed in the right ear and failed in the left. Her eardrums reacted normally in both (this means that fluid in the ear didn't cause the failure in the left ear). At this point, we weren't concerned---she reacted to sounds, turned to look towards the source of a noise, etc. We thought the tests were silly---she had tiny little ear canals, and the little buds kept slipping out, so it seemed like she would obviously fail.
At 12 weeks, she had the ABR. In this test, the child has to remain asleep and perfectly still----little earbuds send noise into the ear canal, and electrodes are attached to the head to measure whether the brain reacts to the noise.
Several times, the audiologists came in from the monitoring room to check the leads, which Dave and I saw slipping out periodically. When they told us that she seemed to be failing, we asked them to double check the buds and connections again . . . and then she passed. They were very suprised and said that they don't typically see infants who keep failing on one ear, but then have a normal ABR.
Hooray!!!!!
(Well, kind of)
Fast forward 2.5 years and she has never passed an in-office hearing test at the ENT (OAEs). Ever. Sometimes one ear passes, but she's never passed a single one in both ears. It's a mystery. Because of that, our ENT (who is amazing) regularly sends us down to NY Eye & Ear Hospital to have "behavioral testing with 2 audiologists". This test relies on the Maya's behavior to let the audiologists know what she hears---she has to look in certain directions, at toys that light up, etc. The problem is, at some point, she's had enough, melts down, and the test end abruptly. We've gone for testing 4 times now, and for the first three the results were always like this:
Audiologist: "Ehhhh . . . the data that we were able to get looks mostly normal, but we weren't able to get everything that we really need to. What do you think about her hearing?"
Me: "I think she hears. She understands when I talk to her, she identifies things in books and follows directions. I don't know if her hearing is perfect, but I know it's functional."
Audiologist: "Ok, that makes sense. Come back in 4-6 months and we'll see if we can try again and learn more."
Unfortunately, when I took her a few weeks ago, she was a mess. Scared, panicked, screaming screaming hysteria that was constant and so loud that the noises she was making were louder than the volume of the tones they needed to test her on, so they couldn't get much data. They couldn't get any data at all on the left ear (which is the one that I'm concerned about).
So we were left with a choice: Do the same as always, and try again in a few months, or repeat the ABR. The problem is this: an infant will sleep soundly through an ABR . . . 3 year old Maya will not. So she'll need to be sedated for the entirety of the test (1.5-2 hrs). And that sucks, which is why we haven't done it within the past 2 years. We've thought "She certainly hears well enough! Does it really matter if she has minor loss in one ear?"
But now some things are different . . . a very smart audiologist friend of mine (thanks, Amy!) pointed out that while she may hear me seemingly perfectly in our quiet apartment, she'll be in a noisy school come September. Some minor hearing loss can be easily addressed with simple devices in the classroom . . . so now would be a good time to really know, once and for all, what her hearing situation is. Yesterday I met with the ENT, and he agrees. It will likely be scheduled for sometime in July.
The worst part about this test is that it feels really lose-lose. Either:
a) Her hearing turns out normal. I feel terrible for putting her through sedation a fourth time, which is miserable for her. I'm sad that we've wasted so much time on appointments for hearing that turned out to be totally normal in the end. Lose.
-or-
b) Her hearing turns out not normal. I feel terrible for missing the oh-so-very-clear signs that were literally present from day 1 (failed screenings, failed tests, not speaking at all, etc). Hindsight will make a million things seem like a neon flashing sign "Mom! I can't hear you! Help me! This is really easy to fix!" Lose.
Lose-Lose.
At least we'll have clear answer, though. The time has come to figure it out for sure.
Two months before she turned two, she had ear tubes put in. (She was semi-innocent and semi-little.)
And soon she'll be 3 (May 30th---it's coming so soon!). I was really excited when I realized that this would be the first year that she wouldn't be sedated for any procedures . . . except now she will be. Not until after her birthday (we don't have a date yet, but it's looking like July-ish) . . . but this will be a big one, somewhere between 1.5-2 hours of sedation.
:(
She'll be having an ABR (hearing test) done. She actually already had one done . . . back when she was itty bitty (12 weeks). Here is her full, confusing, unclear hearing story:
At birth, Maya failed the newborn screening in both ears. She had some fluid issues during delivery, so we thought he ears might just be gunky. Before we were discharged they re-screened her and she failed in the left ear, passed in the right.
Two weeks later, we went to the hospital to get rescreened. Again, she passed in the right ear and failed in the left. Her eardrums reacted normally in both (this means that fluid in the ear didn't cause the failure in the left ear). At this point, we weren't concerned---she reacted to sounds, turned to look towards the source of a noise, etc. We thought the tests were silly---she had tiny little ear canals, and the little buds kept slipping out, so it seemed like she would obviously fail.
My ear canals are too tiny for your silly tests.
At 12 weeks, she had the ABR. In this test, the child has to remain asleep and perfectly still----little earbuds send noise into the ear canal, and electrodes are attached to the head to measure whether the brain reacts to the noise.
12 weeks, during the initial ABR. Yes, we take pictures during everything.
Several times, the audiologists came in from the monitoring room to check the leads, which Dave and I saw slipping out periodically. When they told us that she seemed to be failing, we asked them to double check the buds and connections again . . . and then she passed. They were very suprised and said that they don't typically see infants who keep failing on one ear, but then have a normal ABR.
Hooray!!!!!
(Well, kind of)
Fast forward 2.5 years and she has never passed an in-office hearing test at the ENT (OAEs). Ever. Sometimes one ear passes, but she's never passed a single one in both ears. It's a mystery. Because of that, our ENT (who is amazing) regularly sends us down to NY Eye & Ear Hospital to have "behavioral testing with 2 audiologists". This test relies on the Maya's behavior to let the audiologists know what she hears---she has to look in certain directions, at toys that light up, etc. The problem is, at some point, she's had enough, melts down, and the test end abruptly. We've gone for testing 4 times now, and for the first three the results were always like this:
Audiologist: "Ehhhh . . . the data that we were able to get looks mostly normal, but we weren't able to get everything that we really need to. What do you think about her hearing?"
Me: "I think she hears. She understands when I talk to her, she identifies things in books and follows directions. I don't know if her hearing is perfect, but I know it's functional."
Audiologist: "Ok, that makes sense. Come back in 4-6 months and we'll see if we can try again and learn more."
Unfortunately, when I took her a few weeks ago, she was a mess. Scared, panicked, screaming screaming hysteria that was constant and so loud that the noises she was making were louder than the volume of the tones they needed to test her on, so they couldn't get much data. They couldn't get any data at all on the left ear (which is the one that I'm concerned about).
So we were left with a choice: Do the same as always, and try again in a few months, or repeat the ABR. The problem is this: an infant will sleep soundly through an ABR . . . 3 year old Maya will not. So she'll need to be sedated for the entirety of the test (1.5-2 hrs). And that sucks, which is why we haven't done it within the past 2 years. We've thought "She certainly hears well enough! Does it really matter if she has minor loss in one ear?"
But now some things are different . . . a very smart audiologist friend of mine (thanks, Amy!) pointed out that while she may hear me seemingly perfectly in our quiet apartment, she'll be in a noisy school come September. Some minor hearing loss can be easily addressed with simple devices in the classroom . . . so now would be a good time to really know, once and for all, what her hearing situation is. Yesterday I met with the ENT, and he agrees. It will likely be scheduled for sometime in July.
The worst part about this test is that it feels really lose-lose. Either:
a) Her hearing turns out normal. I feel terrible for putting her through sedation a fourth time, which is miserable for her. I'm sad that we've wasted so much time on appointments for hearing that turned out to be totally normal in the end. Lose.
-or-
b) Her hearing turns out not normal. I feel terrible for missing the oh-so-very-clear signs that were literally present from day 1 (failed screenings, failed tests, not speaking at all, etc). Hindsight will make a million things seem like a neon flashing sign "Mom! I can't hear you! Help me! This is really easy to fix!" Lose.
Lose-Lose.
At least we'll have clear answer, though. The time has come to figure it out for sure.
Wednesday, April 27, 2011
Odds and ends and questions
I'm beat. We had a long ENT appointment today that resulted in no nap for Maya and a long day for me. I'll write it up, to update the family, tomorrow maybe, but tonight I'm beat. Long story short, we're changing both of her daily allergy meds, did a few in office tests that were tiresome but no big deal, and she's going to have a big hearing test sometime in June/July . . . which will require around 2 hrs of sedation. It will be good to have firm answers, but, well . . . (sigh).
And I remembered a funny story that I thought that I had blogged about a few years ago, back when only a few immediate family members were reading it . . . but I searched and can't find it. So I'm going to have to try to remember as many deatils as possible and type it up.
OH!!! And . . . I'm going to have a giveaway! A real one (as in, not a holiday card, which is the only thing I've ever given away). I can't wait to do it . . . I'm just waiting for the package to arrive here, which should be tomorrow or Friday :)
Finally, any questions? Really. I've seen a few bloggers do "Reader's Questions" posts, and they can be interesting. You can comment on this post, or email me at: uncommonfeedback@gmail.com If I get enough questions (or any questions) I'll do an answers post.
And I remembered a funny story that I thought that I had blogged about a few years ago, back when only a few immediate family members were reading it . . . but I searched and can't find it. So I'm going to have to try to remember as many deatils as possible and type it up.
OH!!! And . . . I'm going to have a giveaway! A real one (as in, not a holiday card, which is the only thing I've ever given away). I can't wait to do it . . . I'm just waiting for the package to arrive here, which should be tomorrow or Friday :)
Finally, any questions? Really. I've seen a few bloggers do "Reader's Questions" posts, and they can be interesting. You can comment on this post, or email me at: uncommonfeedback@gmail.com If I get enough questions (or any questions) I'll do an answers post.
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