I didn't grab any photos of the boats this year since we had to keep moving or Elizabeth went into a panic, but I assure you, it is a beautiful sight.
I'll have to dig up some old photos from boat parades in the past and share them.
Wednesday, December 23, 2009
Emma and Elizabeth
Here is a photo of Elizabeth with her pal Emma at the boat parade last week. Elizabeth loved seeing Emma, but the boats--not so much. Well, she likes boats but not when they are all lighted up with screaming people and all sorts of loud music coming from them.
I didn't grab any photos of the boats this year since we had to keep moving or Elizabeth went into a panic, but I assure you, it is a beautiful sight.
I'll have to dig up some old photos from boat parades in the past and share them.
I didn't grab any photos of the boats this year since we had to keep moving or Elizabeth went into a panic, but I assure you, it is a beautiful sight.
I'll have to dig up some old photos from boat parades in the past and share them.
Saturday, December 19, 2009
Happy Birthday to.....
Here is Elizabeth singing Happy Birthday to no one in particular. Of course she is wildly off on her pronunciation but it still shows that she has come a long way in the three months since she has had her ear buds.
Watching this video I feel as if I am watching Elizabeth at 30 years old in some dark karaoke bar after she has had about four too many drinks.
Watching this video I feel as if I am watching Elizabeth at 30 years old in some dark karaoke bar after she has had about four too many drinks.
Wednesday, December 16, 2009
So if you said a prayer...
So, if you said a prayer for Elizabeth...I think someone heard it. Today we met with Dr. Luxford from The House Ear Clinic who is of the world'stop experts in the field of otology (subspecialty of ENT)
To sum it up he assured us that Elizabeth does not have Enlarged Vestibular Aqueducts and thus is not particularly predisposed to further hearing loss. Not that further hearing loss can't happen, but with EVS--it seemed pretty much a sure thing--and forget about it if she fell on her head.
So how did it feel to hear this news? Well, I had this unusual sense of peace come over me as the doctor was talking. And really, it all seemed like a dream. Dr. Luxford allowed us to look at the films as he was reviewing them, and Marty had the bird's eye view, but all I cared about was he kept saying that he didn't find anything unusual. I think we were both in a blissful state of shock.
And once he gave us his opinion and was kneeling down in the hallway writing his notes on the chart,Elizabeth walked right up to him and gave him the sweetest hug. I was surprised she felt felt so inclined, since he was the serious type and definitely no nonsense. It was cute to see him soften up a bit when she hugged him.
Someone asked if I wanted to slug the doctor who gave us the inaccurate diagnosis and subjected all us us to almost a month of grief. Frankly I am so darn thrilled that he was wrong I can't even waste a moment of negative emotion being annoyed with him.
I told Marty I think it was a miracle and he said,"well, actually she never really had it-- you just didn't have the right information." Intellectually I can know that he is right. But somehow I feel there was a divine hand at work in the matter.
And we thank everyone who sent good thoughts, and said prayers and even those who are admittedly not spiritual and said they would, "keep their fingers crossed".
We are grateful.
To sum it up he assured us that Elizabeth does not have Enlarged Vestibular Aqueducts and thus is not particularly predisposed to further hearing loss. Not that further hearing loss can't happen, but with EVS--it seemed pretty much a sure thing--and forget about it if she fell on her head.
So how did it feel to hear this news? Well, I had this unusual sense of peace come over me as the doctor was talking. And really, it all seemed like a dream. Dr. Luxford allowed us to look at the films as he was reviewing them, and Marty had the bird's eye view, but all I cared about was he kept saying that he didn't find anything unusual. I think we were both in a blissful state of shock.
And once he gave us his opinion and was kneeling down in the hallway writing his notes on the chart,Elizabeth walked right up to him and gave him the sweetest hug. I was surprised she felt felt so inclined, since he was the serious type and definitely no nonsense. It was cute to see him soften up a bit when she hugged him.
Someone asked if I wanted to slug the doctor who gave us the inaccurate diagnosis and subjected all us us to almost a month of grief. Frankly I am so darn thrilled that he was wrong I can't even waste a moment of negative emotion being annoyed with him.
I told Marty I think it was a miracle and he said,"well, actually she never really had it-- you just didn't have the right information." Intellectually I can know that he is right. But somehow I feel there was a divine hand at work in the matter.
And we thank everyone who sent good thoughts, and said prayers and even those who are admittedly not spiritual and said they would, "keep their fingers crossed".
We are grateful.
Wednesday, December 9, 2009
Update
So has it really been over two weeks since I last wrote anything? Actually, it seems as if I have lived three lifetimes in the last two weeks.
If I haven't gotten the chance to fill you in personally by now, I can tell you that as I had posted, I was hounding the doctor's for the results of Elizabeth's CT-Scan on November 23rd. Well, the doctor did call me that night and left a message that wasn't exactly what I had wanted to hear.
The message was sort of casual and went something like this, "well, she does have an enlarged vestibular aqueduct but there isn't much you can do about it frankly, so I wouldn't worry about it. Just make sure that she isn't involved in any sports or activity that could lead to head trauma or her falling on her head because she could lose more hearing. If you have any questions, call me."
Say what?
Of course the medical researcher in me hopped on the internet and I was sobered by the research which seems to show that those with enlarged vestibular aqueducts are pretty certain to lose more hearing and often it can lead to losing all hearing.
After calling the doc back on Thanksgiving Eve to question my findings...I wasn't exactly reassurred when he said, "oh, I have a lot of books at home, I will look at them over the weekend and see what I can find out."
Say what?
I have to give him credit for at least admitting he didn't know, but it didn't do much in the way of reassuring me.
Needless to say, I have never had a four day holiday weekend that seemed as if it would NEVER end. I probably put in about 40 hours of research on the internet and if anyone wants to know anything about the vestibles in your ear, call me.
The last two weeks of talking to various specialists and doing more research (and actually having the Ct-Scan report in my hands) this is where we are:
1. The good news so far (knock on wood) is that it looks like this problem shows only in her left ear. (Oh yes, even though I think I am not religious I did say a lot of prayers to St. Anthony--and a few others on this score.) Go figure. And thanks to everyone else who has been praying along.
2. There is some question about the way the diagnosis itself is showing up on the report and my prayer now is that the first doctor misread it. The report shows a "prominent vestibular aqueduct with a 2mm saccular component". We have an appt. on Wednesday at the House Ear Institute with one of the world's top doctor's in the field on this condition. We are hoping to get more definitive answers then.
In the meantime, we are trying not to let on that we are stressed because I am pretty darn certain this little lady of ours picks up on our vibes. Even when we are talking to the doctors now I try and talk to them as if we are just happy as larks and that things are just dandy regardless of what we are talking about.
Elizabeth has probably had more tests and been to more doctors at two years old than many people have in their entire lives it seems. She is one busy lady. In between our doctor appointments she has had a lot of speech therapy and is going through evaluations from our school district for placement possibly into one of their programs. Can you believe it? She is not even three yet and the school district has a file on her.
She does manage, however to slip in time for some fun. More on that later. Here she is in her holiday finery, all dressed up for The Families with Children from China Holiday party where she met this darling girl Lia who is four and a half and decided to take Elizabeth under her wing for the night.
And if this photo of Elizbeth shows her to look a little somber, don't let that fool you. She was having a ball and was pretty much gleeful the entire night. And I can tell you this, "the girl can dance!".
If I haven't gotten the chance to fill you in personally by now, I can tell you that as I had posted, I was hounding the doctor's for the results of Elizabeth's CT-Scan on November 23rd. Well, the doctor did call me that night and left a message that wasn't exactly what I had wanted to hear.
The message was sort of casual and went something like this, "well, she does have an enlarged vestibular aqueduct but there isn't much you can do about it frankly, so I wouldn't worry about it. Just make sure that she isn't involved in any sports or activity that could lead to head trauma or her falling on her head because she could lose more hearing. If you have any questions, call me."
Say what?
Of course the medical researcher in me hopped on the internet and I was sobered by the research which seems to show that those with enlarged vestibular aqueducts are pretty certain to lose more hearing and often it can lead to losing all hearing.
After calling the doc back on Thanksgiving Eve to question my findings...I wasn't exactly reassurred when he said, "oh, I have a lot of books at home, I will look at them over the weekend and see what I can find out."
Say what?
I have to give him credit for at least admitting he didn't know, but it didn't do much in the way of reassuring me.
Needless to say, I have never had a four day holiday weekend that seemed as if it would NEVER end. I probably put in about 40 hours of research on the internet and if anyone wants to know anything about the vestibles in your ear, call me.
The last two weeks of talking to various specialists and doing more research (and actually having the Ct-Scan report in my hands) this is where we are:
1. The good news so far (knock on wood) is that it looks like this problem shows only in her left ear. (Oh yes, even though I think I am not religious I did say a lot of prayers to St. Anthony--and a few others on this score.) Go figure. And thanks to everyone else who has been praying along.
2. There is some question about the way the diagnosis itself is showing up on the report and my prayer now is that the first doctor misread it. The report shows a "prominent vestibular aqueduct with a 2mm saccular component". We have an appt. on Wednesday at the House Ear Institute with one of the world's top doctor's in the field on this condition. We are hoping to get more definitive answers then.
In the meantime, we are trying not to let on that we are stressed because I am pretty darn certain this little lady of ours picks up on our vibes. Even when we are talking to the doctors now I try and talk to them as if we are just happy as larks and that things are just dandy regardless of what we are talking about.
Elizabeth has probably had more tests and been to more doctors at two years old than many people have in their entire lives it seems. She is one busy lady. In between our doctor appointments she has had a lot of speech therapy and is going through evaluations from our school district for placement possibly into one of their programs. Can you believe it? She is not even three yet and the school district has a file on her.
She does manage, however to slip in time for some fun. More on that later. Here she is in her holiday finery, all dressed up for The Families with Children from China Holiday party where she met this darling girl Lia who is four and a half and decided to take Elizabeth under her wing for the night.
And if this photo of Elizbeth shows her to look a little somber, don't let that fool you. She was having a ball and was pretty much gleeful the entire night. And I can tell you this, "the girl can dance!".
Monday, November 23, 2009
Another test today
Early this morning we headed over to St. Josephs to get a CT-Scan of Elizabeth's temporal bones. This could help a little in terms of the diagnosis of her hearing loss. It may or may not tell us anything--but it is important nonetheless. I may have mentioned before that there are syndromes that are associated with hearing loss and we want to rule those out. It may also help us in determining whether her loss is congenital or not.
I called the doctor from the hospital and his nurse said they won't have the results for a few days and we won't get in to see him until next Thursday--which means we may have to wait more than a week for results. Oh course I intend to spend a good part of today and tomorrow hounding the doctor's office to get them sooner. I am pretty sure he will have the results this Wed. and I assume that if we were high on his radar screen we might even know by tomorrow. What we need is a doctor in the family...and while you are at it make that one in every specialty!
The procedure itself went pretty well, save the fact thst she had to have anesthesia. And, she did spend part of her time at the hospital screaming for mercy and pounding on the glass door that kept us locked in the exam room. You had to feel for the poor thing. Once they gave her some sedative she decided things weren't so bad.
The CT-Scan lasted only 5 minutes and she recovered fast and managed to amuse the recovery rooms nurses with her chant "all done".
She is still a tad wobbly, but as the picture below tells you, she is making the most of her day by watching Barney reruns and eating some veggie cheese puffs and drinking Jamba Juice. Oh, she did manage to amuse hospital staff when she started screaming, "I want Jamba Juice" as we walked through the hospital.
I called the doctor from the hospital and his nurse said they won't have the results for a few days and we won't get in to see him until next Thursday--which means we may have to wait more than a week for results. Oh course I intend to spend a good part of today and tomorrow hounding the doctor's office to get them sooner. I am pretty sure he will have the results this Wed. and I assume that if we were high on his radar screen we might even know by tomorrow. What we need is a doctor in the family...and while you are at it make that one in every specialty!
The procedure itself went pretty well, save the fact thst she had to have anesthesia. And, she did spend part of her time at the hospital screaming for mercy and pounding on the glass door that kept us locked in the exam room. You had to feel for the poor thing. Once they gave her some sedative she decided things weren't so bad.
The CT-Scan lasted only 5 minutes and she recovered fast and managed to amuse the recovery rooms nurses with her chant "all done".
She is still a tad wobbly, but as the picture below tells you, she is making the most of her day by watching Barney reruns and eating some veggie cheese puffs and drinking Jamba Juice. Oh, she did manage to amuse hospital staff when she started screaming, "I want Jamba Juice" as we walked through the hospital.
Wednesday, November 18, 2009
Miss Chris
As usual I haven't updated the blog to reflect all the changes that have done on around here in the last month or so. And one of the changes is that Elizabeth has a new speech therapist...Miss Chris. As you can see from the photos that get along famously and Chris and we are lucky to have found her as she is the best specialist around, especially for children with hearing loss.
Elizabeth sees Chris twice a week and she is really helping her to catch up in the language department. As Chris explained, one the most important things we need to teach Elizabeth is "how to listen". When you have gone through your entire life without really hearing much around you, I suppose you just start to tune out most of the "noise" since it really doesn't make much sense.
Our main goal is to have Elizabeth at grade level in terms of language once she reaches kindergarten. I may be deluding myself (oh, yeah I have surprised myself recently with my ability to do that) but I think she will be fairly well caught up in a year or so. We shall see.
Elizabeth sees Chris twice a week and she is really helping her to catch up in the language department. As Chris explained, one the most important things we need to teach Elizabeth is "how to listen". When you have gone through your entire life without really hearing much around you, I suppose you just start to tune out most of the "noise" since it really doesn't make much sense.
Our main goal is to have Elizabeth at grade level in terms of language once she reaches kindergarten. I may be deluding myself (oh, yeah I have surprised myself recently with my ability to do that) but I think she will be fairly well caught up in a year or so. We shall see.
Friday, November 13, 2009
Pretend City
A couple of weeks ago I took Elizabeth over to Pretend City
(a.k.a. Kiddie Nirvana). Check out their website if you want to learn more-- pretendcity.org
Needless to say, she loved it. We got there at 10 a.m. and I had to drag her out at 12:30 owing to my own exhaustion. And you will gather from watching the video that the "amibient" noise was sort of a mixture between a rock concert and being a foot away from a building being demolished. For a girl who wears hearing aids, you'd think she would be a little uncomfortable. It seems, however, her ear buds are working pretty well since she didn't seem at all bothered by the noise. I, on the other hand, will wear ear plugs next time.
The ATM was her favorite spot at Pretend City--hey who could blame her? It seemed she had access to an account that had a fair amount of cash. You will also see that she is a tad upset when some of the money gets stuck in the ATM.
And here she found "her" stage. And she didn't want to get off of it. She just hopped up and stage and started singing and dancing with whomever and however. In this clip she seems to have hooked up with a "less than enthused" Backstreet Boy who decided that it wasn't good for his image to be seen with a 2.9 year old.
Just after the ATM, the gas station was her favorite place. She loved pumping gas. I didn't explain to her that it was unlikely she would all the cash she seems to like if she made that her profession. Oh well, as long as she is happy.
(a.k.a. Kiddie Nirvana). Check out their website if you want to learn more-- pretendcity.org
Needless to say, she loved it. We got there at 10 a.m. and I had to drag her out at 12:30 owing to my own exhaustion. And you will gather from watching the video that the "amibient" noise was sort of a mixture between a rock concert and being a foot away from a building being demolished. For a girl who wears hearing aids, you'd think she would be a little uncomfortable. It seems, however, her ear buds are working pretty well since she didn't seem at all bothered by the noise. I, on the other hand, will wear ear plugs next time.
The ATM was her favorite spot at Pretend City--hey who could blame her? It seemed she had access to an account that had a fair amount of cash. You will also see that she is a tad upset when some of the money gets stuck in the ATM.
And here she found "her" stage. And she didn't want to get off of it. She just hopped up and stage and started singing and dancing with whomever and however. In this clip she seems to have hooked up with a "less than enthused" Backstreet Boy who decided that it wasn't good for his image to be seen with a 2.9 year old.
Just after the ATM, the gas station was her favorite place. She loved pumping gas. I didn't explain to her that it was unlikely she would all the cash she seems to like if she made that her profession. Oh well, as long as she is happy.
Thursday, November 5, 2009
We got our girl two years ago today
Can it really be two years since we first laid eyes on Elizabeth?
Every day I am aware of the all the forces in the universe that had to come together in order for her to be placed in our arms on November 5th 2007. Here we were, three people, over 7,000 miles away from one another and somehow, suddenly, we were, almost magically, bound together for all of our days on this earth.
I often think of Lewis Thomas' words in his book "Lives of a Cell" and in his chapter, "On Probability and Possibility" he says, " Statistically, the probability of any one of us being here is so small that you think the mere fact of existing would keep us all in a contented dazzlement of surprise. We are alive against stupendous odds of genetics, infinitely outnumbered by all the alternatives who might, except for luck, be in our places."
Thomas also talks about the miracle of life and how we should all be shouting from the rooftops about it. That is true. And that is really how I feel about the miracle of our getting Elizabeth. If you hear anyone shouting from the rooftop today--it's me.
Happy Anniversary Day Dearest Elizabeth. We do love you!!!
AND HERE IS OUR POST FROM NOVEMBER 5th 2007
Lucky parents! We got our girl!
We are so thrilled and feel so lucky that Elizabeth became ours today! She is everything we could have hoped for and more!!!
Tuesday, November 3, 2009
The Girls at Halloween
So, yes, this year was a wonderful Halloween for Elizabeth...and it was just as much fun for us to watch "the little princess".
And how great was it that she got to spend Halloween Eve with three of her favorite buddies, Kaila, Megan and Mei Mei. We missed Emma who was home sick, but the girls managed to have a great time. I only wish I had a picture of Megan's mom Norma, who dressed up as Winnie the Pooh.
I love these photos of the girls...
And how great was it that she got to spend Halloween Eve with three of her favorite buddies, Kaila, Megan and Mei Mei. We missed Emma who was home sick, but the girls managed to have a great time. I only wish I had a picture of Megan's mom Norma, who dressed up as Winnie the Pooh.
I love these photos of the girls...
Monday, November 2, 2009
Halloween at The District
Elizabeth and Kaila headed over to The District in Tustin to take advantage of some trick or treating. The only problem was that I got the time wrong...the trick or treating was scheduled between 3 and 6 P.M. and the girls were running into the shops and restaurants at 11 a.m. screaming, "trick or treat!". It worked to their advantage, however, since most stores hadn't even opened their candy stash so the girls got the pick of the litter.
It did take us a while to figure out that we were WAY too early. And we should have caught on when we saw that the girls were the only trick or treaters in the entire mall.
It was however a wonderfully fun morning and Kaila and Elizabeth were just happy to be together.
And, this wasn't their only Halloween escapade. On Halloween Eve, Elizabeth, Kaila, Mei Mei, and Megan all met up for a Costume Contest at the University Center. I have some photos of that but they are on my other camera and I haven't been able to download them yet--hopefully I will get to that tomorrow.
What a fun Halloween for the girls.
At one point Elizabeth and Kaila decided to stop and count their loot.
Here is Elizabeth making her way through the restaurant after we had to wake up the manager so that he could go into the back and get the girls some candy. As you can see from the empty tables--they weren't exactly expecting us.
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It did take us a while to figure out that we were WAY too early. And we should have caught on when we saw that the girls were the only trick or treaters in the entire mall.
It was however a wonderfully fun morning and Kaila and Elizabeth were just happy to be together.
And, this wasn't their only Halloween escapade. On Halloween Eve, Elizabeth, Kaila, Mei Mei, and Megan all met up for a Costume Contest at the University Center. I have some photos of that but they are on my other camera and I haven't been able to download them yet--hopefully I will get to that tomorrow.
What a fun Halloween for the girls.
At one point Elizabeth and Kaila decided to stop and count their loot.
Here is Elizabeth making her way through the restaurant after we had to wake up the manager so that he could go into the back and get the girls some candy. As you can see from the empty tables--they weren't exactly expecting us.
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Sunday, November 1, 2009
Monday, October 26, 2009
ABC
Here is a short little video of Elizabeth doing her ABC's. We have been working on them especially since she got her ear buds in. As you can hear, her speech isn't quite there yet..but in "hearing age" the audiologist tells us she is just about a month old. Considering that...it ain't so bad.
Sunday, October 25, 2009
Full Volume
Has it really been 11 days since the last post? Time has flown by but things have also been really hectic.
I may have said this before but the feeling I have had over the last 6 weeks is sort of like being sent off on a rocket to the moon with no preparation. Things seem to be settling down a bit so hopefully they will stay that way.
I am going to post some new videos and other photos but it is almost 11 pm on Sunday evening and I still have to "crazy glue" Elizabeth's ear mold together for the 4th time (yeah, when she is annoyed she pulls the darn thing out).
Hopefully I will get the new post up tomorrow...in the meantime this photo shows the new gleam in Elizabeth's eyes now that she hears the world at full volume.
Wednesday, October 14, 2009
Dancing Princess
So here she is rockin' away to "The Fresh Beat Band" --a new show that has replaced Wiggles for sure.
She is also wearing a little costume that we got at Rite Aide on sale for $4.99. She loves the dress, although luckily she decided it was a little scratchy--otherwise she would be wearing it everywhere.
She is also wearing a little costume that we got at Rite Aide on sale for $4.99. She loves the dress, although luckily she decided it was a little scratchy--otherwise she would be wearing it everywhere.
Thursday, October 8, 2009
She's a Trooper
So yes, we have been busy the last week or so getting adjusted to Elizabeth and her new ear buds. She has been progressing well in her speech therapy (more about that later) and seems generally more confident and happy most of the time.
We did, however, need to have a second ABR (Auditory Brainstem Response) test done again--the first one wasn't quite right owing to the fact that she wasn't sedated for it and therefore the results were a bit off. We had to take her over to Children's Hospital CHOC in Orange this a.m. so that they could sedate her and administer the test.
Anyone who has been to a children's hospital can likely attest to the fact that it is one of the more sobering places you can visit. Upon our arrival things were fairly upbeat since they have it decorated like a little Disneyland and we arrived before 7 a.m. so there wasn't much activity. As we made our way to the wing of the O.R., things changed and we realized we were in a "hospital". Elizabeth realized it too and even though she was riding through the halls on a little red truck--she saw the lab coats and wanted "out".
The admitting nurse was clever--she took one look at her and asked us if she could give her a little sedative before examining her, because, in his words, "she wasn't going to let him get near her." He was right and we said okay to the sedative. Within half an hour Elizabeth was like any lovable drunk--blowing bubbles and laughing while they checked her heart and took her temperature. She also asked for more of the "juice" a.k.a. "sedative". The nurse, like any good bartender, said-"I wish I could give you more." He did finish the sentence with "sweetie" as opposed to "buddy" at least.
Okay so here I will introject that I started this post about a week ago and am just getting around to finishing it...it has been a hectic week or so.
As far as the ABR results it looks as if Elizabeth's hearing loss is considered "moderate"--which is more or less what we expected. I was hoping that the report would show her loss to be more mild than moderate--but the good news is that her loss is very correctable with hearing aids. There is a spectrum of hearing loss that includes mild, moderate, severe and profound.
Elizabeth has been through lots of tests and has been quite the trooper through everything. She is continuing with her speech therapy and the good news is that her speech is really coming along. And, as this video shows--she is approaching life with a new sense of exuberance now that she can hear better. I get the sense from her that she is actually joyous about a lot of things now--in a way that she wasn't before.
She also has become a tad more self confident and dare I say "bossy" since her ear buds have been on. But more about that later.
We did, however, need to have a second ABR (Auditory Brainstem Response) test done again--the first one wasn't quite right owing to the fact that she wasn't sedated for it and therefore the results were a bit off. We had to take her over to Children's Hospital CHOC in Orange this a.m. so that they could sedate her and administer the test.
Anyone who has been to a children's hospital can likely attest to the fact that it is one of the more sobering places you can visit. Upon our arrival things were fairly upbeat since they have it decorated like a little Disneyland and we arrived before 7 a.m. so there wasn't much activity. As we made our way to the wing of the O.R., things changed and we realized we were in a "hospital". Elizabeth realized it too and even though she was riding through the halls on a little red truck--she saw the lab coats and wanted "out".
The admitting nurse was clever--she took one look at her and asked us if she could give her a little sedative before examining her, because, in his words, "she wasn't going to let him get near her." He was right and we said okay to the sedative. Within half an hour Elizabeth was like any lovable drunk--blowing bubbles and laughing while they checked her heart and took her temperature. She also asked for more of the "juice" a.k.a. "sedative". The nurse, like any good bartender, said-"I wish I could give you more." He did finish the sentence with "sweetie" as opposed to "buddy" at least.
Okay so here I will introject that I started this post about a week ago and am just getting around to finishing it...it has been a hectic week or so.
As far as the ABR results it looks as if Elizabeth's hearing loss is considered "moderate"--which is more or less what we expected. I was hoping that the report would show her loss to be more mild than moderate--but the good news is that her loss is very correctable with hearing aids. There is a spectrum of hearing loss that includes mild, moderate, severe and profound.
Elizabeth has been through lots of tests and has been quite the trooper through everything. She is continuing with her speech therapy and the good news is that her speech is really coming along. And, as this video shows--she is approaching life with a new sense of exuberance now that she can hear better. I get the sense from her that she is actually joyous about a lot of things now--in a way that she wasn't before.
She also has become a tad more self confident and dare I say "bossy" since her ear buds have been on. But more about that later.
Sunday, September 27, 2009
Happy Girls
Yesterday Elizabeth attended her friend Maria's 3rd birthday party which was held at a kid's version of "Nirvana"--Gymboree. As you can see from these videos, the kids had a blast--and if truth be told, I think the adults had just as good a time.
Maria is the beaming girl in the red panda shirt. You can also see Elizabeth with Kayla bouncing and dancing together. Her buddies Emma and Megan were also there and the girls were all thrilled to play together.
All in all it was a wonderful event made even more wonderful for us, as we got to witness Elizabeth having a great time with her ear buds on. And I think there were a few people at the party who probably didn't even know she was wearing them.
Oh, to be three years old again.
Maria is the beaming girl in the red panda shirt. You can also see Elizabeth with Kayla bouncing and dancing together. Her buddies Emma and Megan were also there and the girls were all thrilled to play together.
All in all it was a wonderful event made even more wonderful for us, as we got to witness Elizabeth having a great time with her ear buds on. And I think there were a few people at the party who probably didn't even know she was wearing them.
Oh, to be three years old again.
Friday, September 25, 2009
Lady at lunch
Here is the little Miss sipping tea and having lunch at Neiman Marcus about a month or so ago. I was so proud of her that day. As you may know, the cafe at Neiman's can be a little formal...but she was the perfect lady. When I think of how well she has done all along considering her hearing loss, I am amazed sometimes. Of course she did manage to make her goofy face just to be mischievous--as she often likes to be.
Monday, September 21, 2009
Dancing in the New Year
So here she is again, dancing to the music. I wonder if there has ever been a hard of hearing orchestra conductor? She loves music and she LOVES to direct EVERYTHING, so why not?
She is listening to a CD from a music class she took last year (who knew she wasn't really hearing the music well?) and she loves dancing to this song, which is quite appropriate for the Jewish New Year. And by the way, Happy New Year to all of our friends and family celebrating Rosh Hashanah!
P.S. If you notice Elizabeth wearing this dress in a lot of photos, it is because she is madly in love with it and often refuses to wear anything else. She calls it her "dancing dress" and only if you want to deal with a lot of screaming and tears can you get her to wear something else. She has a closet full of clothes but, as far as she is concerned, this dress rocks!
She is listening to a CD from a music class she took last year (who knew she wasn't really hearing the music well?) and she loves dancing to this song, which is quite appropriate for the Jewish New Year. And by the way, Happy New Year to all of our friends and family celebrating Rosh Hashanah!
P.S. If you notice Elizabeth wearing this dress in a lot of photos, it is because she is madly in love with it and often refuses to wear anything else. She calls it her "dancing dress" and only if you want to deal with a lot of screaming and tears can you get her to wear something else. She has a closet full of clothes but, as far as she is concerned, this dress rocks!
Sunday, September 20, 2009
Dancing to the Music
Elizabeth has always liked music and now, not surprisingly, she likes it even more. Last night she asked us to turn on the music and she proceeded to dance away to it. She woke up this morning and did the same thing.
The last week or so has been long and at times quite difficult. We have all sorts of medical appointments and we have been on a steep learning curve regarding Elizabeth's hearing loss. And I would be lying if I said that I hadn't been awake many nights wondering about all of the implications for Elizabeth. But it does seem that as each day goes by we see Elizabeth blossom a little bit more...and it makes me think of that song, "Everything is gonna be alright."
The last week or so has been long and at times quite difficult. We have all sorts of medical appointments and we have been on a steep learning curve regarding Elizabeth's hearing loss. And I would be lying if I said that I hadn't been awake many nights wondering about all of the implications for Elizabeth. But it does seem that as each day goes by we see Elizabeth blossom a little bit more...and it makes me think of that song, "Everything is gonna be alright."
Friday, September 18, 2009
Ear Buds and Irish Eyes
Here is the video of Elizabeth getting her ear buds placed in her ears by Dr. Maria. The doc tested Elizabeth's reaction by playing "When Irish Eyes are Smiling". That was a song that my mom used to sing, and if you know me, you know that I a convinced she was there with us at that moment. When it comes to things like that, I don't believe in coincidences. Not to mention that Dr. Maria isn't even Irish.
Thursday, September 17, 2009
Elizabeth's Ear Buds are In
Yep..they are in--well, sort of. Elizabeth did get her ear buds yesterday and the process went as well as we could have hoped. And she wore them for a few hours yesterday and today, but we are having some "compliance" issues. Part of that may stem from the fact that I didn't have the strength to coerce her into into wearing them owing to a bad migraine (what, me stressed?). Tonight however was much better and she wore them for a good part of the evening.
It is a joy to see her huge smile when she hears something she has never heard before. Tonight she was listening to her Wiggles videos and was mesmerized. How crazy was it that she watched those videos all the time before and seemed to be enjoying the music so much. It seems she heard a bit of the music and probably loved them so much because she could hear something, but was probably just as mesmerized by the images.
Lots more to tell but will save that for later. Here are some photos and a video of the big day yesterday.
Here is a photo of Elizabeth with her ear buds in. As you can see from the photo the molds are barely visible. The hearing aid itself sits on the back of the ear and it about 3/4 of an inch. If she has her hair down you can't really see anything. The big question we have is whether to keep the dark grey color she has now or switch to a pink one which would match the band on her glasses. They don't make this hearing aid in black, which is what we wanted to match her hair. We'll try the grey for a week and then decide.
Here we are with Dr. Maria after Elizabeth had her buds in for a few minutes.
A little video of Elizabeth with Dr. Maria.
It is a joy to see her huge smile when she hears something she has never heard before. Tonight she was listening to her Wiggles videos and was mesmerized. How crazy was it that she watched those videos all the time before and seemed to be enjoying the music so much. It seems she heard a bit of the music and probably loved them so much because she could hear something, but was probably just as mesmerized by the images.
Lots more to tell but will save that for later. Here are some photos and a video of the big day yesterday.
Here is a photo of Elizabeth with her ear buds in. As you can see from the photo the molds are barely visible. The hearing aid itself sits on the back of the ear and it about 3/4 of an inch. If she has her hair down you can't really see anything. The big question we have is whether to keep the dark grey color she has now or switch to a pink one which would match the band on her glasses. They don't make this hearing aid in black, which is what we wanted to match her hair. We'll try the grey for a week and then decide.
Here we are with Dr. Maria after Elizabeth had her buds in for a few minutes.
A little video of Elizabeth with Dr. Maria.
Friday, September 11, 2009
Elizabeth's "Ear Buddies"
So yesterday we took Elizabeth to her audiologist Dr. Maria Abramson to have her fitted for hearing aids. We were a bit anxious about the thing, but all of our worrying was for naught.
Elizabeth had a great time. Dr. A is a kids dream doctor. She is full of life and super animated--and after 20 years of working with the hard of hearing she talks LOUD and uses lots of gestures. She also wears colorful clothing and generally seems to have a blast doing what she is doing. Luckily the material needed to get a mold of E's ears looked a lot like silly putty--so E thought it was just hysterical when Dr. A used a large syringe to push "silly putty" in her ear.
Elizabeth and Dr. A spent most of the appointment making one another laugh. It was actually a fun time. And she got a great impression of E's ear to boot.
And we went through the list of all of the possible options for a hearing aid--which we have to decided to call Elizabeth's "ear buds" or "ear buddies" when we are talking to Elizabeth about them--it just sounds a lot more fun that way. And what a world of this world of "ear buds" is. They are truly amazing pieces of technology--and not cheap--but now I know why.
Here is a link to the super duper model that we got for Elizabeth. I understand about a tenth of what these things can do, but plan to try and figure it out. In the meantime we hope that are as amazing as they sound.
Here is the link:
http://www.exelia.phonak.com/en/home/
She got the "micro behind the ear" model, as that is the only one recommended for children. And yes, there are all sorts of accessories that can go along with it. As my brother said today, "when she asks for a BMW on her 16th birthday, we'll have to tell her she has been wearing one on her ears for 14 years now!"
And they also seem pretty discrete. We got her a pair in black so that they blend in with her hair. She will also have a flesh colored mold in her ears that attaches by a tiny clear wire to the aid.
We put a rush rush rush on the order so she should be fitted with them by next Wednesday. The audiologist will start her out slowly so as not to overwhelm her.
There's more to the story--I'll fill you in later.
Elizabeth had a great time. Dr. A is a kids dream doctor. She is full of life and super animated--and after 20 years of working with the hard of hearing she talks LOUD and uses lots of gestures. She also wears colorful clothing and generally seems to have a blast doing what she is doing. Luckily the material needed to get a mold of E's ears looked a lot like silly putty--so E thought it was just hysterical when Dr. A used a large syringe to push "silly putty" in her ear.
Elizabeth and Dr. A spent most of the appointment making one another laugh. It was actually a fun time. And she got a great impression of E's ear to boot.
And we went through the list of all of the possible options for a hearing aid--which we have to decided to call Elizabeth's "ear buds" or "ear buddies" when we are talking to Elizabeth about them--it just sounds a lot more fun that way. And what a world of this world of "ear buds" is. They are truly amazing pieces of technology--and not cheap--but now I know why.
Here is a link to the super duper model that we got for Elizabeth. I understand about a tenth of what these things can do, but plan to try and figure it out. In the meantime we hope that are as amazing as they sound.
Here is the link:
http://www.exelia.phonak.com/en/home/
She got the "micro behind the ear" model, as that is the only one recommended for children. And yes, there are all sorts of accessories that can go along with it. As my brother said today, "when she asks for a BMW on her 16th birthday, we'll have to tell her she has been wearing one on her ears for 14 years now!"
And they also seem pretty discrete. We got her a pair in black so that they blend in with her hair. She will also have a flesh colored mold in her ears that attaches by a tiny clear wire to the aid.
We put a rush rush rush on the order so she should be fitted with them by next Wednesday. The audiologist will start her out slowly so as not to overwhelm her.
There's more to the story--I'll fill you in later.
Thursday, September 10, 2009
After the last post I figured I would let you know that Elizabeth is doing well and we are headed to get her hearing aids fitted.
And here are some photos of her doing three of her very favorite things:
Playing in the water
Eating Ice pops
Playing with her friends
And here she is in her FAVORITE swimsuit--sent by G'ma Barbara. Every time I give her a choice, this is the suit she picks!
She always insists on paying for everything. No joke. She will PUSH me out of the way and demand that SHE pays for everything. And she is a big tipper, by the way. Did I tell you about when she put a $5.00 bill into the tip jar for a $2.00 ice pop (or should I say a $7.00 ice pop?).
And here are some photos of her doing three of her very favorite things:
Playing in the water
Eating Ice pops
Playing with her friends
And here she is in her FAVORITE swimsuit--sent by G'ma Barbara. Every time I give her a choice, this is the suit she picks!
She always insists on paying for everything. No joke. She will PUSH me out of the way and demand that SHE pays for everything. And she is a big tipper, by the way. Did I tell you about when she put a $5.00 bill into the tip jar for a $2.00 ice pop (or should I say a $7.00 ice pop?).
Sunday, September 6, 2009
No Words
Here is Elizabeth with her speech therapist, Jan. Elizabeth is thrilled with her--and with the bag of toys she brings with her. I liked Jan the minute I saw her.
Well I did manage to post a few photos last week...but those posts seemed to belie all of the drama unfolding around here.
As I mentioned in a prior post, we have been concerned about Elizabeth's language acquisition . She started speech and language therapy about a month ago and it was sheer luck that we got the speech therapist that we did.
I have always wondered if her hearing was part of the speech problem and we had her hearing evaluated by specialists earlier this year. She passed their tests and they said her hearing was,quote, "great".
I still had my serious doubts but heck ,when everyone including the doctors are telling you that your daughter can hear and that you should stop being a 'Jewish mother" , you really want to believe them. So I did.
Stupidly.
But I knew something wasn't right. Elizabeth learned certain things like the colors and she could count to ten, and various things that showed she was functioning well cognitively.
But she just wasn't picking up things as she should have been. And as Marty would tell everyone, "she just doesn't understand a lot of things that other kids her age understand.
Jan the speech therapist, then said to me, "Mary I don't usually go into my personal life, but I can tell you that my daughter is hearing impaired and she was misdiagnosed for over a year...and you are telling me so many things that I told people when she was Elizabeth's age."
She told us that her daughter had passed THREE hearing tests, because at this young age they test hearing with visual cues and if the child is clever they can pretty much pick up what they are supposed to do. She then gave us some small hearing tests to do with Elizabeth at home. She failed every one of them.
We also learned that the only way to truly test a toddler's hearing is to do an ABR (auditory brainstem response ) test while they are sleeping. This test allows for the testing of the child's hearing as well as differentiates between brain related hearing loss and ear related hearing loss.
Needless to say we did everything humanly possible to get Elizabeth this test ASAP. We had the test done on last Thursday and to make a long story much shorter, the good news is that Elizabeth does not have an auditory processing disorder--but the bad news is that she does have a significant hearing loss.
It is not good news. But we are also aware that the news could be much worse...and for that we are grateful.
I think since the day we had the diagnosis confirmed I have been wavering in and out of various stages of grief to some degree. At first I think there was some shock and denial (even though I had been thinking she had a hearing loss for some time) and then there has been a lot of guilt.
For a year I sensed her hearing wasn't quite right--and think deep inside I knew there was a problem--regardless of what everyone else told me. And then when the hearing test which confirmed her hearing was fine. And, even though I still doubted it--I accepted the test results. Of course I wanted to believe they were correct.
Friends and family have been kind to say that Elizabeth is lucky to have us as parents because we love her so much and take such good care of her. But the truth is I feel as if I have failed her in this case. I truly am angry with myself for not pushing through and demanding that she get more tests. I assume you will tell me that I should stop beating myself up--but the audiologist who confirmed her hearing loss had it right when she said, "I can tell you not to feel guilty but I am a mother too and I know whatever I say, you are still going to feel as if you could have done more." She is right and that is something I will just have to live with.
In the meantime as you can imagine, we are doing everything we can to make sure Elizabeth gets the best care and intervention possible... She has a long road ahead of her to catch up. Most of our brain development as it relates to language occurs before three years of age--and she has missed out on a very significant portion of that.
I have more information on the details of her hearing loss but I will do that another time. And the truth is that there is still a lot we have to learn about all of this. One thing I can tell you is that her hearing loss is estimated to be "moderate" and I am thinking and hoping that it is on the low end of moderate.
Elizabeth has an appt. with the ENT doctor on Tuesday and then likely sometime next week she will be fitted with hearing aids. All of the doctors have said that she will "catch up". It may take her a year or two but we will do all we can.
Interestingly, it was a week ago Friday that we determined Elizabeth had a hearing loss, and on Saturday I found myself watching Ted Kennedy's funeral--which you would think had no relation to Elizabeth's hearing loss. But for me it did. I heard Kennedy's son Teddy Jr. speak about losing his leg to cancer in the winter of his 12th year. During the first snowstorm that year his dad took out the snow sled and said to Teddy Jr, "let's go sledding". Teddy Jr. was hesitant but went ahead--he fell badly after the first try and cried that he couldn't do it and would never be able to do it because of his leg. His dad said, "you CAN do it and I don't care if we have to stay on this hill all day--you are going to sled down this hill. Teddy Jr. cried as he recounted " I did sled down that hill that day" and for him that was a powerful lesson that colored the rest of his life.
And...that was a powerful lesson for me and one that even further strengthened my resolve to help Elizabeth not feel hindered by her hearing impairment.
And on a lighter note...we are going to have large posters made up that say, "When life gives you lemons, make lemonade".
In the end we are so blessed and so lucky and we know that. And as my brother said, "she doesn't realize that she has these issues". and if you look at her, it is true-- she is as happy as a lark. (knock on wood).
And on a yet lighter note...I think we are in for quite a ride when Elizabeth really gets going with her speech. Right now she has a large vocabulary of single words--although not too many that she puts together. And she is fascinated with a few words which she repeats quite often. One of those words is "animal".
So, today while we were in line at a local cafe, there was a VERY and I mean VERY large man in front of us. She decided she was going to practice her words and starting pointing at him yelling, "Animal, Animal.". Did I want to hide under a rock? Oh yeah. I simply said, "oh she calls everyone Animal". But that didn't seem to help the problem and only caused her to go into the mantra, "animal, animal, animal.'
"Kids say the darn'dst things"
And yes we are looking forward to all of those things.
Well I did manage to post a few photos last week...but those posts seemed to belie all of the drama unfolding around here.
As I mentioned in a prior post, we have been concerned about Elizabeth's language acquisition . She started speech and language therapy about a month ago and it was sheer luck that we got the speech therapist that we did.
I have always wondered if her hearing was part of the speech problem and we had her hearing evaluated by specialists earlier this year. She passed their tests and they said her hearing was,quote, "great".
I still had my serious doubts but heck ,when everyone including the doctors are telling you that your daughter can hear and that you should stop being a 'Jewish mother" , you really want to believe them. So I did.
Stupidly.
But I knew something wasn't right. Elizabeth learned certain things like the colors and she could count to ten, and various things that showed she was functioning well cognitively.
But she just wasn't picking up things as she should have been. And as Marty would tell everyone, "she just doesn't understand a lot of things that other kids her age understand.
Jan the speech therapist, then said to me, "Mary I don't usually go into my personal life, but I can tell you that my daughter is hearing impaired and she was misdiagnosed for over a year...and you are telling me so many things that I told people when she was Elizabeth's age."
She told us that her daughter had passed THREE hearing tests, because at this young age they test hearing with visual cues and if the child is clever they can pretty much pick up what they are supposed to do. She then gave us some small hearing tests to do with Elizabeth at home. She failed every one of them.
We also learned that the only way to truly test a toddler's hearing is to do an ABR (auditory brainstem response ) test while they are sleeping. This test allows for the testing of the child's hearing as well as differentiates between brain related hearing loss and ear related hearing loss.
Needless to say we did everything humanly possible to get Elizabeth this test ASAP. We had the test done on last Thursday and to make a long story much shorter, the good news is that Elizabeth does not have an auditory processing disorder--but the bad news is that she does have a significant hearing loss.
It is not good news. But we are also aware that the news could be much worse...and for that we are grateful.
I think since the day we had the diagnosis confirmed I have been wavering in and out of various stages of grief to some degree. At first I think there was some shock and denial (even though I had been thinking she had a hearing loss for some time) and then there has been a lot of guilt.
For a year I sensed her hearing wasn't quite right--and think deep inside I knew there was a problem--regardless of what everyone else told me. And then when the hearing test which confirmed her hearing was fine. And, even though I still doubted it--I accepted the test results. Of course I wanted to believe they were correct.
Friends and family have been kind to say that Elizabeth is lucky to have us as parents because we love her so much and take such good care of her. But the truth is I feel as if I have failed her in this case. I truly am angry with myself for not pushing through and demanding that she get more tests. I assume you will tell me that I should stop beating myself up--but the audiologist who confirmed her hearing loss had it right when she said, "I can tell you not to feel guilty but I am a mother too and I know whatever I say, you are still going to feel as if you could have done more." She is right and that is something I will just have to live with.
In the meantime as you can imagine, we are doing everything we can to make sure Elizabeth gets the best care and intervention possible... She has a long road ahead of her to catch up. Most of our brain development as it relates to language occurs before three years of age--and she has missed out on a very significant portion of that.
I have more information on the details of her hearing loss but I will do that another time. And the truth is that there is still a lot we have to learn about all of this. One thing I can tell you is that her hearing loss is estimated to be "moderate" and I am thinking and hoping that it is on the low end of moderate.
Elizabeth has an appt. with the ENT doctor on Tuesday and then likely sometime next week she will be fitted with hearing aids. All of the doctors have said that she will "catch up". It may take her a year or two but we will do all we can.
Interestingly, it was a week ago Friday that we determined Elizabeth had a hearing loss, and on Saturday I found myself watching Ted Kennedy's funeral--which you would think had no relation to Elizabeth's hearing loss. But for me it did. I heard Kennedy's son Teddy Jr. speak about losing his leg to cancer in the winter of his 12th year. During the first snowstorm that year his dad took out the snow sled and said to Teddy Jr, "let's go sledding". Teddy Jr. was hesitant but went ahead--he fell badly after the first try and cried that he couldn't do it and would never be able to do it because of his leg. His dad said, "you CAN do it and I don't care if we have to stay on this hill all day--you are going to sled down this hill. Teddy Jr. cried as he recounted " I did sled down that hill that day" and for him that was a powerful lesson that colored the rest of his life.
And...that was a powerful lesson for me and one that even further strengthened my resolve to help Elizabeth not feel hindered by her hearing impairment.
And on a lighter note...we are going to have large posters made up that say, "When life gives you lemons, make lemonade".
In the end we are so blessed and so lucky and we know that. And as my brother said, "she doesn't realize that she has these issues". and if you look at her, it is true-- she is as happy as a lark. (knock on wood).
And on a yet lighter note...I think we are in for quite a ride when Elizabeth really gets going with her speech. Right now she has a large vocabulary of single words--although not too many that she puts together. And she is fascinated with a few words which she repeats quite often. One of those words is "animal".
So, today while we were in line at a local cafe, there was a VERY and I mean VERY large man in front of us. She decided she was going to practice her words and starting pointing at him yelling, "Animal, Animal.". Did I want to hide under a rock? Oh yeah. I simply said, "oh she calls everyone Animal". But that didn't seem to help the problem and only caused her to go into the mantra, "animal, animal, animal.'
"Kids say the darn'dst things"
And yes we are looking forward to all of those things.
Monday, August 31, 2009
Water Baby
Last week our next door neighbor Jane invited Elizabeth to her pool for a swim. Do you think she had a good time?
Saturday, August 29, 2009
Little Miss Elizabeth
Here you see Elizabeth trying out for a role on "Lifestyles of the Rich and Famous". I love the last photo of her on the phone--she loves telephones.
And she is figuring out that for the price of a $20.00 lunch you can hang out in the hotels and resorts that the movie stars do. I think you also learn this growing up in N.Y.C. When we were teenagers, my cousin and I used to scape money together and have dinner at the 21 Club! Hey, even a cat can look at a king!
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