Saturday, October 24, 2009
Tuesday, September 15, 2009
Happy Birthday, Princess!
On Sunday, we took Zoe to see Sesame Street LIVE at first mariner arena- let me tell you, it was too cute! Zoe just sat there the whole time staring- attentively watching every single act. She, like me, is not really a fan of people in giant suits- but I figured she would like it if they kept their distance... LOL :)
She has only recently begun watching TV like anything- I don't even think she knew what it was until a couple months ago. She was perfectly happy just playing with her toys and getting into things she isn't supposed to- sitting quietly and watching cartoons or a movie is not a luxury that my daughter has really ever afforded me. Now, however- TV can sometimes hold her attention for about 5! whole! minutes!!! because she loves the charachters and recognizes them from her toys and/or books. Her favorites are usually of the NOGGIN variety- you know, Wow Wow Wubbzy and the like- and she rarely seen much sesame street.
She has only recently begun watching TV like anything- I don't even think she knew what it was until a couple months ago. She was perfectly happy just playing with her toys and getting into things she isn't supposed to- sitting quietly and watching cartoons or a movie is not a luxury that my daughter has really ever afforded me. Now, however- TV can sometimes hold her attention for about 5! whole! minutes!!! because she loves the charachters and recognizes them from her toys and/or books. Her favorites are usually of the NOGGIN variety- you know, Wow Wow Wubbzy and the like- and she rarely seen much sesame street.
Me, however- having grown up wishing I could really live on Sesame Street, I was stoked about the show probably more than any grown person should be. When Big Bird took the stage, it was like 1989 all over again... can't you just imagine a cute little 5 year old version of me, sitting cross-legged in front of our floor unit TV for hours, singing and dancing, and using the letter of the day enough times to drive my parents crazy? Can't you? Well, I can. Anyway. They were all there- all my beloved charachters, some new ones, and of course, my daughter's namesake*- which I joyfully pointed to every time she dared to come within 10 feet of us. Zoe seemed to enjoy it, even though she didn't do as much singing and dancing as most of the kids- she just sat and took it all in. It was the quietest I have seen her in, well... not counting when she's asleep- probably ever. She then proceeded to shake her little booty and bob her head back and forth in the lobby. Crazy backwards child of mine. *OK, i really didn't name my daughter after a Sesame Street character- though that would be wicked cool. Oh, here are a few pics from the show...
This was part of Zoe's birthday present since we aren't throwing a big party this year. Shut up, I already feel bad enough about it. We will probably take her to Chuck E Cheese and get her a cake next weekend, after she officially turns 2 on 9/23/09 (at 9:02 PM). WOW, I can't believe my baby is turning 2 already. I still remember the day I brought her home from the hospital. What she wore that first night, how she slept, how she smelled, the little baby noises she made, and how amazing she was... God I miss those days. The days when I could lay her on a bed or on a blanket on the floor and she would still be there 5 minutes- nay, 5 Seconds- later. The days when I was faster than Her. The days when I cheerfully washed her little bottles and tidyed up her room while she NAPPED. Well, it's all good though- just another stepping stone, right? One day she will be a teenager, and she will HATE me sometimes. She will claim I am ruining her life and curse the day I birthed her because she has a curfew. Then one day she'll be an adult- and run off to marry some guy that I probably won't even like- and I will be saying how much I missed the days when she would take her shoes off in the backseat while mommy is driving, or throw herself dramatically to the floor over a cup of juice or some fruit snacks, or run from me in public places and ake me chase her. I will long for these days just as much as I long for her infant days now.
But for now, she's only 2. She likes to read stories and get tucked in close to her mommy at night. She likes lots of love, hugs and kisses with no strings attached. She likes to run in the grass and feel the sunshine on her face. She likes to point at things and watch mommy look around for what she wants while babbling to me- probably telling me how much of an idiot I am in baby talk. She loves to go to the park and slide down the big girl slide. She loves to jump in the air (and sometimes fall on her butt) just because. She likes to scream just because screaming is fun. She likes to take long walks and point out all the birdies, doggies, and people. She likes to dress herself with hilarious results sometimes. She likes to lay in bed with mommy and cuddle before going to sleep. And, luckily for us- she loves both her mommy and her daddy like they hung the moon. In the end, she is still and always will be mommy's baby, she's just getting older, and cuter :) So, Happy Birthday baby girl- We Love You more than you can imagine.
Friday, September 4, 2009
It's A Small World After All...
When I first started on this journey with Zoe back in March, I felt all alone. I felt like I couldn't fathom why this had to happen to MY baby, or what I had done to cause it. As time has passed, I am quickly realizing that our situation is not uncommon. There are many more high functioning deaf people than I ever thought. They have great jobs and function in society just fine, dealing with their disability the best way they can. Sure, it has it's challenges- but this happened to us for a reason. Zoe is a very special little girl, and without being hearing impaired, she wouldn't be Zoe. I got to thinking about this because while getting my (fabulous) hair cut at Bubbles in Arundel Mills mall, my stylist and I (Hi Ashlee!) got to chatting- she told me how her son is doing the "your baby can read" program, and that at 18 months she is amazed at how much he is learning. And when I told her about Zoe's hearing loss, and how she is slowly learning sign language- she and I got into conversation about how her father, aunt and uncle are all deaf- and i thought, WOW, I'm not alone after all. She told me about programs her mother was involved in, and encouraged me to get as involved as possible in the deaf community. I think I will do that. We have already made the first step by enrolling Zoe in the MSD program for toddlers- so we just have to reach out further and really show her how many kids are just like her. It's so great to meet people who understand your situation a little bit!
I wonder sometimes...
...Why people feel the need to look down on to talk down to other people like they are so high and mighty? I mean, I have never really been one to care how someone raises THEIR child, unless it is just wrong and unhealthy for the child. I have seen and heard it all when it comes to parenting techniques in the short 2 years I have been a parent. I have seen the overzealous "Boob Nazi's" that swear infant formula is rat poisoning and that anyone who formula feeds is a bad mother and should not have kids. I have seen the issues and debates on co-sleeping, baby wearing, pacifiers, vaccinations/immunizations, cloth diapering, blah, blah, BLAH. I mean, if I use disposable diapers, formula feed, and let my daughter sleep with me in bed, is she going to grow up any differently? NO. Also, why does everyone CARE so much what I, or anyone else, does to raise THEIR kids???
I got to thinking about this not because of all the typical debates i listed above, but because of a topic on another of my favorite blogs about cochlear implants. Now, I am TERRIFIED of the whole thing- the procedure, the changes and everything. Plus, our daughter is not deaf. Zoe is hard of hearing- meaning she has some hearing, but needs amplification to help her. From what I know about cochlear implants (read: not much) , they are mainly for people who were not helped by hearing aids, and/or are completely deaf. However, I recently learned that this, too- is a topic up for debate. Apparently, some people think the implant takes away the "culture" of a deaf person- like hearing is a bad thing because it changes who they are. I, personally- think those people are on crack. WHY, oh WHY, would you deliberately deny your child the ability to hear if you could give that to them? I just don't get it. But, it's not up to me to "get" those people, or care if they choose that for their child or not. So why do others feel the need to down other people and make them feel bad for their decision? Oh well, I guess the deaf community is not any different from any other community- each has it's taboos and stigmas, stereotypes and misconceptions. It's just up to us as parents to make the right decision for OUR children.
I got to thinking about this not because of all the typical debates i listed above, but because of a topic on another of my favorite blogs about cochlear implants. Now, I am TERRIFIED of the whole thing- the procedure, the changes and everything. Plus, our daughter is not deaf. Zoe is hard of hearing- meaning she has some hearing, but needs amplification to help her. From what I know about cochlear implants (read: not much) , they are mainly for people who were not helped by hearing aids, and/or are completely deaf. However, I recently learned that this, too- is a topic up for debate. Apparently, some people think the implant takes away the "culture" of a deaf person- like hearing is a bad thing because it changes who they are. I, personally- think those people are on crack. WHY, oh WHY, would you deliberately deny your child the ability to hear if you could give that to them? I just don't get it. But, it's not up to me to "get" those people, or care if they choose that for their child or not. So why do others feel the need to down other people and make them feel bad for their decision? Oh well, I guess the deaf community is not any different from any other community- each has it's taboos and stigmas, stereotypes and misconceptions. It's just up to us as parents to make the right decision for OUR children.
T-Minus 9 Days...
Until Sesame Street LIVE at first Mariner Arena!
I am sooo excited! Zoe is going to have sooo much fun! Well, at lease i HOPE so... I keep thinking about our fiasco with the Easter bunny this year, and how Zoe thought he was the devil's spawn. I am crossing my fingers that she enjoys the show and isn't, you know... scared shitless. 'Cuz that would be unpleasant, to say the least. Our seats are pretty good, so I'm not really worried about her being able to see the show or keeping her interest, so here's to hoping for a great time with our friends and her god sister- we don't get to see her very much because her mother is CRAZY... but that's a whole 'nother story, and I will not put their business out here for all to see.
So, anyway- if anyone is going to see Elmo next Sunday in Baltimore- send me an email!!!
Thursday, September 3, 2009
99 Things
I saw this over on JazzieandTahlia- (http://jazzieandtahlia.typepad.com/my_weblog/), and thought it looked like fun, so here we go! Copy the list and then Bold (or underline) the things you’ve done, and post this list on your blog or FaceBook, etc... then leave me a comment with a link soI can go see it!
1. Started your own blog
2. Slept under the stars (sort of, it was VERY early morning, the sun was coming up)
3. Played in a band
4. Visited Hawaii
5. Watched a meteor shower
6. Given more than you can afford to charity
7. Been to Disneyworld
8. Kissed a stranger at midnight on New Year’s Eve
9. Held a praying mantis
10. Written something that was published
11. Bungee jumped or parachuted
12. Walked across the Golden Gate Bridge
13. Been in a fist fight
14. Taught yourself an art from scratch
15. Adopted a child
16. Had food poisoning
17. Seen the Rings of Saturn with a telescope
18. Grown your own vegetables
19. Seen the Mona Lisa in France
20. Slept on an overnight train
21. Had a pillow fight
22. Hitch hiked
23. Taken a sick day when not ill
24. Built a tree house or snow fort
25. Held a lamb
26. Gone skinny dipping
27. Run a marathon
28. Ridden in a gondola in Venice
29. Seen a total eclipse
30. Fired a gun
31. Hit a home run
32. Been on a cruise
33. Seen Niagara Falls in person
34. Visited the birthplace of your ancestors
35. Seen an Amish community
36. Taught yourself a new language
37. Had enough money to be truly satisfied
38. Visited the Leaning Tower of Pisa
39. Gone rock climbing
40. Seen Michelangelo’s David
41. Sung karaoke!
42. Seen Old Faithful geyser erupt
43. Bought a stranger a meal
44. Visited Africa
45. Cried yourself to sleep
46. Been transported in an ambulance
47. Had your portrait painted
48. Gone deep sea fishing
49. Seen the Sistine Chapel in person
50. Visited the Eiffel Tower
51. Gone scuba diving or snorkeling
52. Kissed in the rain
53. Pretended you cooked something from scratch when you didn't.
54. Gone to a drive-in theater
55. Been in a movie or commercial
56. Visited the Great Wall of China
57. Started a business
58. Taken a martial arts class
59. Visited Russia
60. Served at a soup kitchen
61. Sold something door to door (girl scout cookies, anyone?)
62. Gone whale or dolphin watching
64. Donated blood, marrow, etc
65. Gone sky diving
66. Visited a Nazi Concentration Camp
67. Bounced a check (LOL!)
68. Flown in a helicopter
69. Held onto a favorite childhood toy (in my closet at home!)
70. Visited the Lincoln Memorial
71. Eaten frog legs or caviar
72. Pieced a quilt
73. Stood in Time Square
74. Toured the Everglades
75. Been fired from a job
76. Seen the Changing of the Guards in London
77. Broken a bone
78. Done something illegal (pleading the 5th)
79. Seen the Grand Canyon in person
80. Sang a solo
81. Visited the Vatican
82. Bought a brand new car
83. Walked in Jerusalem
84. Had your picture in the newspaper
85. Climbed a mountain
86. Visited the White House
87. Killed and prepared an animal for eating
88. Had surgery
89. Directly saved someone’s life
90. Sat on a jury
91. Met someone famous
92. Joined a book club
93. Seen a loved one die
94. Given birth to a baby
95. Visited the Alamo
96. Swam in the Great Salt Lake
97. Been involved in a law suit
98. Sent a text message while driving
99. Been stung by a bee
Guess I'm pretty boring...Your Turn!!!!!!!!!!!!!!!!!
xoxo
~Lisa
1. Started your own blog
2. Slept under the stars (sort of, it was VERY early morning, the sun was coming up)
3. Played in a band
4. Visited Hawaii
5. Watched a meteor shower
6. Given more than you can afford to charity
7. Been to Disneyworld
8. Kissed a stranger at midnight on New Year’s Eve
9. Held a praying mantis
10. Written something that was published
11. Bungee jumped or parachuted
12. Walked across the Golden Gate Bridge
13. Been in a fist fight
14. Taught yourself an art from scratch
15. Adopted a child
16. Had food poisoning
17. Seen the Rings of Saturn with a telescope
18. Grown your own vegetables
19. Seen the Mona Lisa in France
20. Slept on an overnight train
21. Had a pillow fight
22. Hitch hiked
23. Taken a sick day when not ill
24. Built a tree house or snow fort
25. Held a lamb
26. Gone skinny dipping
27. Run a marathon
28. Ridden in a gondola in Venice
29. Seen a total eclipse
30. Fired a gun
31. Hit a home run
32. Been on a cruise
33. Seen Niagara Falls in person
34. Visited the birthplace of your ancestors
35. Seen an Amish community
36. Taught yourself a new language
37. Had enough money to be truly satisfied
38. Visited the Leaning Tower of Pisa
39. Gone rock climbing
40. Seen Michelangelo’s David
41. Sung karaoke!
42. Seen Old Faithful geyser erupt
43. Bought a stranger a meal
44. Visited Africa
45. Cried yourself to sleep
46. Been transported in an ambulance
47. Had your portrait painted
48. Gone deep sea fishing
49. Seen the Sistine Chapel in person
50. Visited the Eiffel Tower
51. Gone scuba diving or snorkeling
52. Kissed in the rain
53. Pretended you cooked something from scratch when you didn't.
54. Gone to a drive-in theater
55. Been in a movie or commercial
56. Visited the Great Wall of China
57. Started a business
58. Taken a martial arts class
59. Visited Russia
60. Served at a soup kitchen
61. Sold something door to door (girl scout cookies, anyone?)
62. Gone whale or dolphin watching
64. Donated blood, marrow, etc
65. Gone sky diving
66. Visited a Nazi Concentration Camp
67. Bounced a check (LOL!)
68. Flown in a helicopter
69. Held onto a favorite childhood toy (in my closet at home!)
70. Visited the Lincoln Memorial
71. Eaten frog legs or caviar
72. Pieced a quilt
73. Stood in Time Square
74. Toured the Everglades
75. Been fired from a job
76. Seen the Changing of the Guards in London
77. Broken a bone
78. Done something illegal (pleading the 5th)
79. Seen the Grand Canyon in person
80. Sang a solo
81. Visited the Vatican
82. Bought a brand new car
83. Walked in Jerusalem
84. Had your picture in the newspaper
85. Climbed a mountain
86. Visited the White House
87. Killed and prepared an animal for eating
88. Had surgery
89. Directly saved someone’s life
90. Sat on a jury
91. Met someone famous
92. Joined a book club
93. Seen a loved one die
94. Given birth to a baby
95. Visited the Alamo
96. Swam in the Great Salt Lake
97. Been involved in a law suit
98. Sent a text message while driving
99. Been stung by a bee
Guess I'm pretty boring...Your Turn!!!!!!!!!!!!!!!!!
xoxo
~Lisa
School Daze
This week, Zoe went to her first day of "school"! Well, not really school, more like a playgroup i guess- but either way... Jonathan and I took her to the Maryland Schhol for the Deaf in Columbia, MD on the first day of school to get her registered. Since Zoe will not be 2 years old for a few more weeks, she is in the infant group- ages 0-24 months. Of course, she looked like the jolly green giant in a room full of smaller children, but she enjoyed it . While she played, we were shown around the school and filled out some paperwork. After Zoe turns 2, we plan on sending her there as many of the 5 days a week we can. Transportation is going to be an issue since school is from 9am-Noon, and both of us are already at work before 9am. We are going to have to rely heavily on family and friends to get us through this, we just pray it will work out. Everyone at the school was so nice and asccepting of us- but we felt so out of place. See, everyone there- EVERYONE- seems to sign MUCH better than both of us combined. They sign while they are talking to you, even though you are "hearing". It's a little awkward because you are not sure where to look- at their face or their hands... LOL.
After the tour and paperwork, we attended the weekly parents meeting with the parents of the other kids in the younger age group. It was actually really nice to meet other people that are going through what you are and understand your situation. someone you can ask questions to, get or give advice to, and just share experiences. Once that was over, we went to pick Zoe up, and she seemed so content to be there, she didn't want to leave! She even wanted to hug everyone as we left. The teachers and teacher aides were super nice and couldn't wait to see Zoe again- we got so many compliments about how cute she was, her pretty pink earmolds, etc... she was eating up the attention! It really made me feel good, though- like we were really taking charge of our daughter's life and her disability- and taking the steps needed to help her be the best she can be.
She is growing so fast, and all of the sudden lately we are getting this verbal blossoming of sorts- she is coming out of her mouth with words- actual understandable WORDS- randomly out of nowhere. She said Einstein the other day! Yes, EINSTEIN!!! That's our dog's name, lest you wonder where the heck she came up with that from. I was sitting there next to her- nobody told me she said it, I HEARD it. then, my mom has been playing "Miss Mary Mack" with her, and the other day she started clapping her hands, saying "Mack" "Mack", "Black"... WOW. Now, she even says "Pot, Pot" for "Potty". I am so proud of my big girl- potty training is going so well. She wore the same pull up all day yesterday- She only wet it when she went out to eat with my mom and she peed in the car on the way home. Other than that, she went on the potty all day long!!! Go Zoe, Go!
xoxo
~Lisa
After the tour and paperwork, we attended the weekly parents meeting with the parents of the other kids in the younger age group. It was actually really nice to meet other people that are going through what you are and understand your situation. someone you can ask questions to, get or give advice to, and just share experiences. Once that was over, we went to pick Zoe up, and she seemed so content to be there, she didn't want to leave! She even wanted to hug everyone as we left. The teachers and teacher aides were super nice and couldn't wait to see Zoe again- we got so many compliments about how cute she was, her pretty pink earmolds, etc... she was eating up the attention! It really made me feel good, though- like we were really taking charge of our daughter's life and her disability- and taking the steps needed to help her be the best she can be.
She is growing so fast, and all of the sudden lately we are getting this verbal blossoming of sorts- she is coming out of her mouth with words- actual understandable WORDS- randomly out of nowhere. She said Einstein the other day! Yes, EINSTEIN!!! That's our dog's name, lest you wonder where the heck she came up with that from. I was sitting there next to her- nobody told me she said it, I HEARD it. then, my mom has been playing "Miss Mary Mack" with her, and the other day she started clapping her hands, saying "Mack" "Mack", "Black"... WOW. Now, she even says "Pot, Pot" for "Potty". I am so proud of my big girl- potty training is going so well. She wore the same pull up all day yesterday- She only wet it when she went out to eat with my mom and she peed in the car on the way home. Other than that, she went on the potty all day long!!! Go Zoe, Go!
xoxo
~Lisa
Tuesday, August 25, 2009
a thought for today...
So, the other day, I put a link to the blog on facebook so my friends could read Zoe's story and see how she's doing. A comment was made by an old friend that got me thinking. It was simple, really- she just said "I'm Sorry, Lisa". The first thing I thought was, "sorry? For what?" This made me realize just how far we have come since we first discovered Zoe's hearing loss. Back then, I too felt sorry for her. I felt sorry for me. I thought the worst and felt how unfair it was that MY little girl had a disability. I was scared of the changes that would be taking place in the future- the hearing aids, her development- everything- was up in the air and i was terrified. I spent many nights (and days!) crying, bawling my eyes out even- worrying about this and that- how this would affect her relationships in the future, if she would ever be "normal".
Now, i realize that she IS normal. This is the way she was meant to be- and without her hearing aids, Zoe wouldn't be Zoe. I have learned that my daughter is perfect just the way she is. I do not feel sorry for her- I am happy that she has the hearing that she does- and that she is also blessed with so much more- she has a family that adores her, she's happy and healthy. Then, the other night, my mother wound up a musical jewelry box for Zoe- you know the one every little girl has had at one point in their life- with the little triangle shaped mirror and tiny spinning ballerina? Unfortunately, she was getting ready for bed and I had already taken her "ears" out. So, Zoe- the amazing little girl that she is, lifts the music box to her ear, and then to her other ear. She may have been able to hear it, maybe not. She might have been feeling the vibration against her cheek. My mom commented how sweet it was, and that she felt sorry for her. Again, I asked "why"? She said because she couldn't hear her music box. I just popped her neon pink hearing aids in her ears- problem solved. She may not hear like you and me, but she HEARS. That is all that matters to us. She hears her favorite TV show, music on the radio, (and shakes her little booty to it) dogs barking in the distance- we are so blessed. So, please- do not feel sorry for Zoe. She is luckier than so many children in this world, disabled or not.
xoxo
Lisa
Now, i realize that she IS normal. This is the way she was meant to be- and without her hearing aids, Zoe wouldn't be Zoe. I have learned that my daughter is perfect just the way she is. I do not feel sorry for her- I am happy that she has the hearing that she does- and that she is also blessed with so much more- she has a family that adores her, she's happy and healthy. Then, the other night, my mother wound up a musical jewelry box for Zoe- you know the one every little girl has had at one point in their life- with the little triangle shaped mirror and tiny spinning ballerina? Unfortunately, she was getting ready for bed and I had already taken her "ears" out. So, Zoe- the amazing little girl that she is, lifts the music box to her ear, and then to her other ear. She may have been able to hear it, maybe not. She might have been feeling the vibration against her cheek. My mom commented how sweet it was, and that she felt sorry for her. Again, I asked "why"? She said because she couldn't hear her music box. I just popped her neon pink hearing aids in her ears- problem solved. She may not hear like you and me, but she HEARS. That is all that matters to us. She hears her favorite TV show, music on the radio, (and shakes her little booty to it) dogs barking in the distance- we are so blessed. So, please- do not feel sorry for Zoe. She is luckier than so many children in this world, disabled or not.
xoxo
Lisa
Friday, August 21, 2009
Look! Cute baby pictures!!!
So here are some more current pictures of Miss Zoe- sorry about the quality- they were taken on my cell phone. The first one she was enjoying a bubble gum slush at Sonic- and the other one she was just cheesin' in the car with her fave shades on!
She is without aids in both pics :(
For some reason, she thinks wearing hearing aids in the car is for losers. At least she (usually) hands them over to me- and doesn't throw them out the window (knock on wood).
She is without aids in both pics :(
For some reason, she thinks wearing hearing aids in the car is for losers. At least she (usually) hands them over to me- and doesn't throw them out the window (knock on wood).
This week's sign- "Cow"
I decided since not many people follow my little humble blog, that asking for suggestions for Zoe's weekly sign was a little futile at this point. so i made the executive decision (ooohhh... I have a blog like all the cool kids, so i make the decisions!) to just pick one to start out with on my own. We live in the middle of f'ing NOWHERE, and most of what Zoe sees is farmland- cows, horses, corn, etc... so what better to teach her than the things she sees every day? That's why i decided to make this weeks sign "Cow".
i'm not really sure why there is japanese on this picture, but it's the best one i could find... OK?!?!?! so Zoe and friends will be working on this sign this week. She's a pretty quick learner, so maybe I'll add a sign if she is doing well with this one. I thank you, as always- for following Zoe's progress!
xoxo- Lisa
Thursday, August 20, 2009
New Feature!
I have decided that since our signing could use a little help- (we know a bunch of signs but only use a few of them really) that each week I will post a new sign, teach it to Zoe, and report back on how she is doing with it. I think it will benefit both of us- so here goes nothing! First, I would like to go over some of the signs Zoe does know, and ask for suggestions to what the weekly sign should be, based on her age and necessities- (she doesn't need to know the sign for "beer" yet.) Thank you in advance for helping me out!
Zoe knows:
-Eat (of course...)
-Cup
-More
-Daddy/Grandpa
-Mommy/Grandma
-Cookie
-Milk
-Cracker (A favorite joke in our house)
-Ball
-Baby
-Doggie
-Kitty
-Chicken
Zoe actually verbalizes the following:
-Mama
-Dada
-Eesha (my sister's name is Alesha- apparently it is now everyone else's name, too)
-What's that? (sounds more like Wassat?)
-Yea/Yes
-Eye
-Nose
-Mouth (sounds more like "Mow", as in rhyming with "Cow")
There may be a few more, but those are the most i can think of. She does a lot of pointing, which her developmental specialist has no beef with- she says it is a healthy form of communicating her needs to us, even though we are working towards more signs and speaking words. So, what do you think she should learn next?
Zoe knows:
-Eat (of course...)
-Cup
-More
-Daddy/Grandpa
-Mommy/Grandma
-Cookie
-Milk
-Cracker (A favorite joke in our house)
-Ball
-Baby
-Doggie
-Kitty
-Chicken
Zoe actually verbalizes the following:
-Mama
-Dada
-Eesha (my sister's name is Alesha- apparently it is now everyone else's name, too)
-What's that? (sounds more like Wassat?)
-Yea/Yes
-Eye
-Nose
-Mouth (sounds more like "Mow", as in rhyming with "Cow")
There may be a few more, but those are the most i can think of. She does a lot of pointing, which her developmental specialist has no beef with- she says it is a healthy form of communicating her needs to us, even though we are working towards more signs and speaking words. So, what do you think she should learn next?
potty training...
Is a topic that I never imagined I would have to talk about nearly 2 years ago. It seemed so far away, like something i knew i would eventually HAVE to do, but that was so distant that i didn't let it worry me. Well, guess what? *knock, knock*.. who is it? Pull-Ups!!!! I bought Zoe her first pair of pull ups this past weekend and reallys tarted to focus on potty training. I mean, she has peed on the potty a bunch of times, wakes up dry in the mornings, and even pooped once! I was so proud of her- so i decided she must be ready. Now, i know the sign for potty- 
which we have been using every time we sit her on the pretty pink cushy-seat "big girl" potty we bought- but is there anything else i can do to help a child who is hard of hearing get potty trained as quickly as her peers? This is an area I have always been kinda scared about, for some reason. She only has a few understandable words, not many signs (but is doing well with her hearing aids)- So I feel almost guilty for pushing her into such a momentous task when she can barely tell me she wants a cup of milk or a cookie. Should i wait? I dont feel like i am pushing her too hard, i dont force her to do it when she doesn't seem to want to... how did you teach your kid(s)?
Oh, look- an embarrassing future blackmail picture...
which we have been using every time we sit her on the pretty pink cushy-seat "big girl" potty we bought- but is there anything else i can do to help a child who is hard of hearing get potty trained as quickly as her peers? This is an area I have always been kinda scared about, for some reason. She only has a few understandable words, not many signs (but is doing well with her hearing aids)- So I feel almost guilty for pushing her into such a momentous task when she can barely tell me she wants a cup of milk or a cookie. Should i wait? I dont feel like i am pushing her too hard, i dont force her to do it when she doesn't seem to want to... how did you teach your kid(s)?
Oh, look- an embarrassing future blackmail picture...
Wednesday, July 29, 2009
Blog, meet Lisa. Lisa, meet your blog.
WOW- it has been a LONG time since I have updated my blog. I am an avid blog reader, and I love to write- but so much has happened since I began blogging that I let life overwhelm me and swallow up everything I used to love doing. Since my last post, we have had ups and downs, good times and bad times, and life-changing times as well. Please excuse me if I ramble, sound pathetic or whatever. It’s just how I roll. Since my last post, Zoe’s daddy and I have split up. We are working on our relationship. but putting our daughter first right now.
Anyway, on July 4th- a matter of 2 weeks after we decided to split, we both packed up all of our stuff- He moved home to his mom’s, and Zoe and I moved home with my mom- leaving behind our old apartment, and (A! Brand! New!) thousands of dollars in debts that now need to be paid off. Sounds sweet, huh? Moving back home and getting your life straightened out- paying off old bills and getting back on your feet… uh, no. it’s not quite that simple. You see, my (decent paying, albeit mind numbingly boring) job is in Baltimore- and my mom, she lives in bumfucked Pennsylvania. Nearly 2 hours ONE WAY- TWICE A DAY. I swear I spend enough in gas and car repairs to have my own place, but I am trying to be patient. Well, I fear that I may bore you to death with my misery and woes, so let me get back to the point of the blog.
What’s that? Zoe? OH!!! Zoe is just fine. Over the last 3 months or so since I last wrote, she has really begun to blossom! She has become very accustomed to wearing her hearing aids, and rarely takes them off- except in the car. We still haven’t figured out exactly why, but that’s where we are. I have to tell you- watching her learn and grow every day is just amazing. She is now doing quite well with naming the parts of the face- and I have never been so happy to have someone shove a chubby, sticky little finger into my eye socket and proudly proclaim “EYE”! She’s just amazing- she even knows how to do “itsy bitsy spider” now. Except when you get to the “out comes the sun” part… for some reason she hates that part; refuses to do it, and will bite you if you try to make her.
She has a small, but recognizable (to us) vocabulary- which is exciting. She says: Eye, nose, mouth, hand, Ow (ouch), “It Hurts” (always the drama queen), shoes, mama, she barks like a dog, sometimes meows like a cat, and she has a much wider range of signs that she uses on a daily basis. Granted, some people’s kids have full conversations at this age, but I am trying not to let it discourage me. I work with her as much as possible- I name everything as we walk, sound out words and teach her signs. She is still working with her developmental specialist to learn new signs and everything, but she has gotten most of her progress from right at home.
One of the newer things we have been dealing with lately has been her behavior. For the last couple months, we have run face first into the terrible two’s like a brick f’ing wall. It’s funny to look back now and laugh at your (formerly childless) self, isn’t it? Remember when you would see a child in a store, running from their parents, throwing themselves on the floor, screaming for some random toy or whatever? You’d watch in horror and confidently tell yourself “that will never be MY kid”. HA!!!! Karma’s a bitch, my friend. My daughter is now in what I lovingly refer to as the “fish phase”. That is, whenever she doesn’t get her way, she drops to the floor like a ton of bricks, then proceeds to flail her arms and legs wildly like a fish out of water.
Most of the time, it’s the smallest things that set her off into full blown tantrum mode in public. She absolutely WILL NOT hold my hand. EVER. You know, because I might embarrass her in front of the kid who is knuckle deep in his nose, or the little girl with the snot crusted to her face… I don’t know. So she will immediately go limp, dangling by one arm in one violent jerk. So I do what anyone would do- I pick her up. BIG MISTAKE. HUGE. She will thrash about and scream and swing her noggin around until you get into the store, sometimes longer. I know this will eventually (please God) pass… but it’s what we’re dealing with right now, and it aint pretty.
Thanks for reading this- I promise (to myself?) to start updating more regularly!!!!!!!
Anyway, on July 4th- a matter of 2 weeks after we decided to split, we both packed up all of our stuff- He moved home to his mom’s, and Zoe and I moved home with my mom- leaving behind our old apartment, and (A! Brand! New!) thousands of dollars in debts that now need to be paid off. Sounds sweet, huh? Moving back home and getting your life straightened out- paying off old bills and getting back on your feet… uh, no. it’s not quite that simple. You see, my (decent paying, albeit mind numbingly boring) job is in Baltimore- and my mom, she lives in bumfucked Pennsylvania. Nearly 2 hours ONE WAY- TWICE A DAY. I swear I spend enough in gas and car repairs to have my own place, but I am trying to be patient. Well, I fear that I may bore you to death with my misery and woes, so let me get back to the point of the blog.
What’s that? Zoe? OH!!! Zoe is just fine. Over the last 3 months or so since I last wrote, she has really begun to blossom! She has become very accustomed to wearing her hearing aids, and rarely takes them off- except in the car. We still haven’t figured out exactly why, but that’s where we are. I have to tell you- watching her learn and grow every day is just amazing. She is now doing quite well with naming the parts of the face- and I have never been so happy to have someone shove a chubby, sticky little finger into my eye socket and proudly proclaim “EYE”! She’s just amazing- she even knows how to do “itsy bitsy spider” now. Except when you get to the “out comes the sun” part… for some reason she hates that part; refuses to do it, and will bite you if you try to make her.
She has a small, but recognizable (to us) vocabulary- which is exciting. She says: Eye, nose, mouth, hand, Ow (ouch), “It Hurts” (always the drama queen), shoes, mama, she barks like a dog, sometimes meows like a cat, and she has a much wider range of signs that she uses on a daily basis. Granted, some people’s kids have full conversations at this age, but I am trying not to let it discourage me. I work with her as much as possible- I name everything as we walk, sound out words and teach her signs. She is still working with her developmental specialist to learn new signs and everything, but she has gotten most of her progress from right at home.
One of the newer things we have been dealing with lately has been her behavior. For the last couple months, we have run face first into the terrible two’s like a brick f’ing wall. It’s funny to look back now and laugh at your (formerly childless) self, isn’t it? Remember when you would see a child in a store, running from their parents, throwing themselves on the floor, screaming for some random toy or whatever? You’d watch in horror and confidently tell yourself “that will never be MY kid”. HA!!!! Karma’s a bitch, my friend. My daughter is now in what I lovingly refer to as the “fish phase”. That is, whenever she doesn’t get her way, she drops to the floor like a ton of bricks, then proceeds to flail her arms and legs wildly like a fish out of water.
Most of the time, it’s the smallest things that set her off into full blown tantrum mode in public. She absolutely WILL NOT hold my hand. EVER. You know, because I might embarrass her in front of the kid who is knuckle deep in his nose, or the little girl with the snot crusted to her face… I don’t know. So she will immediately go limp, dangling by one arm in one violent jerk. So I do what anyone would do- I pick her up. BIG MISTAKE. HUGE. She will thrash about and scream and swing her noggin around until you get into the store, sometimes longer. I know this will eventually (please God) pass… but it’s what we’re dealing with right now, and it aint pretty.
Thanks for reading this- I promise (to myself?) to start updating more regularly!!!!!!!
Thursday, April 9, 2009
New Ears!
Zoe has had her hearing aids for over a week now, and I have to say it has been... challenging. The constant feedback drives me up a wall so much that I take them out more than I want to just to get a break from it. It sucks that my baby has to hear this noise whenever she lays her head down, leans in for a big hug, etc. So Friday Dr. Robinson will give us a new pair- apparently a stronger, better pair- YAY!!!! I hope they are better than the ones we have now. I mean, I know they are just temporary loaners, but geez!
I am really starting to get used to the idea of her having to wear hearing aids, though dealing with the obstacle of her being a very active toddler sometimes wears on me. She still takes them out, and I am not really sure why. I wonder if they bother her- maybe she hears feedback, or they don't fit properly; but I really think it has a lot to do with the whole power struggle aspect of it. She knows what pushes mommy and daddy's buttons- and she pushes them as often as she pleases! She knows when she is being bad- obvious by her running away when we stand up to come get her when she is pulling all the DVD's out on the floor, pushing buttons on the printer, trying to stand on dining room chairs, and now... pulling out her hearing aids. She even gives us a sneaky little giggle when she does it! It's hard to be mad, though- because she's just so darn cute!!!
Things at home are a little tense lately- what with worrying about Zoe, finances, all this responsibilty sometimes weighs heavy on the shoulders. I try to keep a handle on my worrying and stressing, but I am just not that strong. I have to let it out, and poor Jonathan is usually the unfortunate recipient. I hope he knows I love him, and that even though we are going through a lot in our relationship right now- we have to stay strong together as one. We WILL get through this, and a bright future is ahead for all 3 of us!
So I am a little bit excited to see how the new aids work- my mom will be going with Jonathan and Zoe to the appointment at 11:30am tomorrow. She will enjoy going- my mom feels really left out of Zoe's life with her living so far away from us. Jonathan's family is so much more involved in her life, and I know that probably hurts sometimes.
Easter is upon us, now too- we have to take Zoe to see the Easter bunny!!! I think we will be doing that Friday Evening, so I will try to post a picture sometime soon.
You can kind of see her first pair of aids in the pic on the right- they were a neutral color, so they sort of blended into her skintone- unlike the new ones which are bright neon pink... LOL :)
I am really starting to get used to the idea of her having to wear hearing aids, though dealing with the obstacle of her being a very active toddler sometimes wears on me. She still takes them out, and I am not really sure why. I wonder if they bother her- maybe she hears feedback, or they don't fit properly; but I really think it has a lot to do with the whole power struggle aspect of it. She knows what pushes mommy and daddy's buttons- and she pushes them as often as she pleases! She knows when she is being bad- obvious by her running away when we stand up to come get her when she is pulling all the DVD's out on the floor, pushing buttons on the printer, trying to stand on dining room chairs, and now... pulling out her hearing aids. She even gives us a sneaky little giggle when she does it! It's hard to be mad, though- because she's just so darn cute!!!
Things at home are a little tense lately- what with worrying about Zoe, finances, all this responsibilty sometimes weighs heavy on the shoulders. I try to keep a handle on my worrying and stressing, but I am just not that strong. I have to let it out, and poor Jonathan is usually the unfortunate recipient. I hope he knows I love him, and that even though we are going through a lot in our relationship right now- we have to stay strong together as one. We WILL get through this, and a bright future is ahead for all 3 of us!
So I am a little bit excited to see how the new aids work- my mom will be going with Jonathan and Zoe to the appointment at 11:30am tomorrow. She will enjoy going- my mom feels really left out of Zoe's life with her living so far away from us. Jonathan's family is so much more involved in her life, and I know that probably hurts sometimes.
Easter is upon us, now too- we have to take Zoe to see the Easter bunny!!! I think we will be doing that Friday Evening, so I will try to post a picture sometime soon.
You can kind of see her first pair of aids in the pic on the right- they were a neutral color, so they sort of blended into her skintone- unlike the new ones which are bright neon pink... LOL :)
Oh, and we are without Easter Bunny pics because apparently Zoe thinks the bunny is the son of Satan. She nearly climbed over my back trying to escape him- good thing we didn't wait in a long line! Maybe next year...
Wednesday, April 1, 2009
The Journey Really Begins Here...
Well, the long-awaited night finally came last night- Zoe got her hearing aids. When I first saw them, I thought they were not too bad- smaller than I thought they would be, which is good. I think she is hearing things a little better now... I think. Dr. Robin said she did well when she tested her reaction and localization of sounds in the soundproof booth. She did turn toward them several times- but then she started anticipating which side the noise was going to come from, and it was a little more difficult to tell if she actually heard it, or was guessing which side it would come from. She didn't seem to be bothered by the aids, she seemed to like them and showed off in the doctors office, running around and making noises. It worried me a little that Dr. Robin had to program them at level 3, a stronger amplification- because I wonder if they are actually going to help her, or if she may need the implant surgery. I don't know how well I will be able to handle that, my baby having to get surgery. It was enough seeing her get sedated and not have an invasive procedure for the ABR.
It is still going to take some time before she may "learn to listen"-know when someone is talking to her, where the sound is coming from, and what the words mean. I am happy that she finally has the help she needs, though. She seemed so happy to have them in for the most part. I can see, though- that these are going to be part of the daily power struggle that any parent deals with when they have a very active toddler. She pulled them out about 6 or 7 times last night- not because I think she doesn't like them or doesn't want to wear them, but because she wants to have the control. It is going to be challenging to make her understand that she is not allowed to take them out, only a grown up can. We just put them right back in when she takes them out. She even laughs and runs away when she does it, a sure sign that she is doing it just to push our buttons, because it is the same reaction as when she is messing with something she knows she's not supposed to. As soon as we get up and come to get her, she giggles and runs away, usually ending up hiding in her butterfly tent that we have set up in our living room.
She wore them all the way home from the doctors office with no problems- she looked around, made noises, and didn't even touch them until we got home. I sat in the backseat with her so it would be easier to make sure she didn't pull them off and toss them (like she does with anything else when we're in the car)- and talked to her. She turned toward me when I called her name- which was just amazing. I could tell after doing it a couple times that she could really hear me, it wasn't just a coincidence that she turned in my direction. She even got a little startled one time, maybe I talked too loud.
One thing I am having problems with is the feedback noise. The aids we have now are just loaners, and they have considerable feedback if she lays her head down on them, or if they are not in all the way with a tight seal. I am afraid that she will hear this, and not like having them in for fear that noise will happen. I always turn them off before I put them in or reposition them so she doesn't hear that noise. We hope that if these help her, and this is the route we need to go with her- that the permanent aids we will get for her will be a little better. They better be for what we have to pay for them.
Now that the aids are in, I really have to get a grip on reality. My daughter has a disability. She will need help hearing for the rest of her life, whether it is with hearing aids, an implant, whatever. I still love her just the same, of course. In fact, even just last night I think I realized she gave me more patience through this. I am sympathetic to her, I guess- which makes me more patient and try to help her. Her dad got pretty frustrated with her taking them out- and I did too at first, but then all of the sudden I felt calmer- I put them back in and didn't get mad at her. The only thing I did differently from any other night, is that last night I held her in bed with me and rocked her to sleep. She was kicking and screaming wildly- more than usual, which made me think she was probably scared and confused as to why she could hear things just a few minutes ago, and them mommy and daddy took it away. I couldn't bear her laying in her crib alone in silence after just being able to hear for the first time. She finally went to sleep, and i cuddled her and kissed her for a while before laying her in the crib.
It is going to take some time for me to really wrap my head around all of this, and get used to her new situation. I think I am finally comin to terms with it, but we shall see how the next 3 months with these loaner aids pans out.
It is still going to take some time before she may "learn to listen"-know when someone is talking to her, where the sound is coming from, and what the words mean. I am happy that she finally has the help she needs, though. She seemed so happy to have them in for the most part. I can see, though- that these are going to be part of the daily power struggle that any parent deals with when they have a very active toddler. She pulled them out about 6 or 7 times last night- not because I think she doesn't like them or doesn't want to wear them, but because she wants to have the control. It is going to be challenging to make her understand that she is not allowed to take them out, only a grown up can. We just put them right back in when she takes them out. She even laughs and runs away when she does it, a sure sign that she is doing it just to push our buttons, because it is the same reaction as when she is messing with something she knows she's not supposed to. As soon as we get up and come to get her, she giggles and runs away, usually ending up hiding in her butterfly tent that we have set up in our living room.
She wore them all the way home from the doctors office with no problems- she looked around, made noises, and didn't even touch them until we got home. I sat in the backseat with her so it would be easier to make sure she didn't pull them off and toss them (like she does with anything else when we're in the car)- and talked to her. She turned toward me when I called her name- which was just amazing. I could tell after doing it a couple times that she could really hear me, it wasn't just a coincidence that she turned in my direction. She even got a little startled one time, maybe I talked too loud.
One thing I am having problems with is the feedback noise. The aids we have now are just loaners, and they have considerable feedback if she lays her head down on them, or if they are not in all the way with a tight seal. I am afraid that she will hear this, and not like having them in for fear that noise will happen. I always turn them off before I put them in or reposition them so she doesn't hear that noise. We hope that if these help her, and this is the route we need to go with her- that the permanent aids we will get for her will be a little better. They better be for what we have to pay for them.
Now that the aids are in, I really have to get a grip on reality. My daughter has a disability. She will need help hearing for the rest of her life, whether it is with hearing aids, an implant, whatever. I still love her just the same, of course. In fact, even just last night I think I realized she gave me more patience through this. I am sympathetic to her, I guess- which makes me more patient and try to help her. Her dad got pretty frustrated with her taking them out- and I did too at first, but then all of the sudden I felt calmer- I put them back in and didn't get mad at her. The only thing I did differently from any other night, is that last night I held her in bed with me and rocked her to sleep. She was kicking and screaming wildly- more than usual, which made me think she was probably scared and confused as to why she could hear things just a few minutes ago, and them mommy and daddy took it away. I couldn't bear her laying in her crib alone in silence after just being able to hear for the first time. She finally went to sleep, and i cuddled her and kissed her for a while before laying her in the crib.
It is going to take some time for me to really wrap my head around all of this, and get used to her new situation. I think I am finally comin to terms with it, but we shall see how the next 3 months with these loaner aids pans out.
Friday, March 27, 2009
Faith
So my mom and Jonathan have been on me a lot lately about my faith. They keep saying that I need to put this in God's hands and pray on it. Now, I have never been the biggest religious person... I won't say I don't believe in God, but I am just not the church-going type if you know what I mean. I guess there has to be something out there bigger than us- and I do believe that miracles can happen. My mom tried to make the point to me that my dad (who died of cardiomyopathy when I was 11) was a miracle because his heart actually shrunk, and the doctors did not know how or why. Sure, amazing, miraculous even... but he still died. I can hold on to the fact that God let him have more time with his family before dying, but inside I am still angry he had to die.
Then there is my mom- she has "almost died" more times than I am comfortable with. Well, I would still be uncomfortable with once, but you get what I'm saying. She is quite possibly a walking miracle herself, so her faith is strong as it always has been. She believes that as long as you say thank you to God every day for your blessings, and say "all is well", that God will work for you in those areas of your life. I don't know how much I believe that God is going to make my little girl be able to hear... prove me wrong, Jesus! I feel bad that I feel this way, but my faith in miracles might not be as strong as others.
So now that I am trying to move on to accepting this, I do often wonder where God fits into the picture. Is this supposed to be a good thing? Supposed to teach me something or open my eyes? Maybe, but I find that unfair. My little girl doesn't deserve this. God was supposed to bring her into this world perfect. Sure, you can argue that she is God's vision of perfect for her as an individual- but what if there were no hearing aids? What if the hearing aids don't help? God just wants her to be deaf? It is all so controversial and confusing for me, so I decided to leave God out of this.
Rather, we will deal with this on our own and hope (and pray?) for the best. Jonathan's faith is so much stronger than mine, especially right now. I hope one day I can feel that way, but for now I am still unsure about a lot of things, and sadly, my faith is one of them.
Then there is my mom- she has "almost died" more times than I am comfortable with. Well, I would still be uncomfortable with once, but you get what I'm saying. She is quite possibly a walking miracle herself, so her faith is strong as it always has been. She believes that as long as you say thank you to God every day for your blessings, and say "all is well", that God will work for you in those areas of your life. I don't know how much I believe that God is going to make my little girl be able to hear... prove me wrong, Jesus! I feel bad that I feel this way, but my faith in miracles might not be as strong as others.
So now that I am trying to move on to accepting this, I do often wonder where God fits into the picture. Is this supposed to be a good thing? Supposed to teach me something or open my eyes? Maybe, but I find that unfair. My little girl doesn't deserve this. God was supposed to bring her into this world perfect. Sure, you can argue that she is God's vision of perfect for her as an individual- but what if there were no hearing aids? What if the hearing aids don't help? God just wants her to be deaf? It is all so controversial and confusing for me, so I decided to leave God out of this.
Rather, we will deal with this on our own and hope (and pray?) for the best. Jonathan's faith is so much stronger than mine, especially right now. I hope one day I can feel that way, but for now I am still unsure about a lot of things, and sadly, my faith is one of them.
Thursday, March 26, 2009
No Aids Yet...
OK so the hearing aids didn't come in again today- well, the earmolds are not in. So I will get to go to the sonogram after all. I am more excited for that than I was for the aids, as I stated yesterday. I am getting a little impatient, though- I would like to see her reaction to (hopefully)hearing. One more day, I think- they should be in tomorrow at the latest from what they tell us. I am off to see my baby neice now! Makes me want to have another one, but with everything that is going on, I am still too scared to commit to that.
Wednesday, March 25, 2009
Hearing Aids
Well, Zoe's hearing aids came in today. The audiologist- well, from now on she will just be Dr. Robin... anyway, Dr. Robin had to program them, and the ear molds should be in tomorrow. Jonathan found this out when he called them- he is so excited that he couldn't wait for them to call us. Well, I talked this over with my sis-in-law Jess today. I am having a hard time feeling excited about this. Sure, it will likely make me very happy to know that she can hear me- but I am not excited. I am not excited, happy or optimistic like everyone else seems to be, and I don't know why.
I simply cannot manage to see the good in all of this. I know I should be counting my blessings that she is even alive and healthy- but I can't. I can't look at my baby and know that she will have this hardship to deal with that other kids don't have to deal with for the rest of her life, and be happy. I guess my mind may change after tomorrow, when we are supposed to go get the aids- but I don't know. Is it normal to feel this way? Should I be happy and/or excited about tomorrow? Jess (currently preggo) is having a 4D sonogram tomorrow evening, and I was actually more disappointed to miss that than miss the hearing aids. I guess because I would rather be happy seeing my perfect little baby neice than to deal with the reality of our situation.
I guess we will have to see what tomorrow brings, but as of right now I don't really care what happens tomorrow. We waited this long for a diagnosis, We can wait another day for hearing aids. I try to hide these feelings from Jonathan because he is always the one who trys to be strong, and I want to show him that I can accept and deal with this- but, truth be told- I can't.
I simply cannot manage to see the good in all of this. I know I should be counting my blessings that she is even alive and healthy- but I can't. I can't look at my baby and know that she will have this hardship to deal with that other kids don't have to deal with for the rest of her life, and be happy. I guess my mind may change after tomorrow, when we are supposed to go get the aids- but I don't know. Is it normal to feel this way? Should I be happy and/or excited about tomorrow? Jess (currently preggo) is having a 4D sonogram tomorrow evening, and I was actually more disappointed to miss that than miss the hearing aids. I guess because I would rather be happy seeing my perfect little baby neice than to deal with the reality of our situation.
I guess we will have to see what tomorrow brings, but as of right now I don't really care what happens tomorrow. We waited this long for a diagnosis, We can wait another day for hearing aids. I try to hide these feelings from Jonathan because he is always the one who trys to be strong, and I want to show him that I can accept and deal with this- but, truth be told- I can't.
Monday, March 23, 2009
Discipline?
Lately I am finding it more and more difficult figuring out ways to discipline Zoe. It seems like I am constantly yelling at her- not because I want to, because I don't know if she can hear me. I have tried using the signs for "stop" and "no"- but she doesn't seem to respond well to those. I can handle disciplining a child- I have a 12 year old sister who I almost raised when I was just 12 years old myself. I didn't do too bad with her, I learned what punishments were effective for her age and it worked fine. I do not know how to discipline a hearing impaired child. I know she needs to learn boundries, and respect, and all of those things people teach their kids- but I just don't know how.
She doesn't understand why mommy is mad at her, she doesn't understand what I want from her. I feel terrible for even having to discipline her. Some days I want to just let her do whatever she wants just because I feel sorry for her situation. I know that is not the right thing to do for her, though. Zoe's main discipline issues lie in basic "meddling"- she picks up everything. She gets up on the chair to the dining room table and pours drinks out on the floor, or drowns herself in them trying to drink from a larger cup before I grab her off the chair. She runs with an outstretched arm across the vertical blinds, and yanks on them until I go get her. I can see that she knows what pushes our buttons, she even takes off running the minute someone stands up to grab her away from what she is doing.
Maybe this doesn't have as much to do with her being hearing impaired as it does her just being a toddler, but I am finding it hard to figure out what to do with her sometimes!
She doesn't understand why mommy is mad at her, she doesn't understand what I want from her. I feel terrible for even having to discipline her. Some days I want to just let her do whatever she wants just because I feel sorry for her situation. I know that is not the right thing to do for her, though. Zoe's main discipline issues lie in basic "meddling"- she picks up everything. She gets up on the chair to the dining room table and pours drinks out on the floor, or drowns herself in them trying to drink from a larger cup before I grab her off the chair. She runs with an outstretched arm across the vertical blinds, and yanks on them until I go get her. I can see that she knows what pushes our buttons, she even takes off running the minute someone stands up to grab her away from what she is doing.
Maybe this doesn't have as much to do with her being hearing impaired as it does her just being a toddler, but I am finding it hard to figure out what to do with her sometimes!
Confused...
I find myself more and more confused as this journey continues. Jonathan told me the other day about a program that our doctor showed him. It takes a sound- say, a barking dog or a bus, and adjusts it to the level at which they say Zoe can hear. He said he could not hear the barking dog at all when she adjusted it, and could barely hear the bus. Why, then- does zoe startle when I yell her name from across the room? She must hear something, right? Of course, I don't want to slip back into the denial phase, but I am simply confused. I am not denying that Zoe has a hearing problem- it is obvious when i call her name that she usually does not turn around. I just don't understand why sometimes she appears to have heard something, and sometimes she doesn't.
This week Zoe will be getting her hearing aids, and we are all very anxious and excited to see what happens. I know my child, so I know that Zoe is going to be a little irritated and want to pull them out every 10 seconds- but we have to make her keep them in. The doctor said the most important thing we can do is to make her understand that we are the boss, and that she never takes them out by herself- that an adult must always help her. I keep thinking about all the responsibility that is going to come with this- I hope I can handle it! I am struggling with accepting that this is happening still. I have no idea what is taking so long to move on, but I am stuck just outside acceptance. I am in a place where I know that this is happening, I understand what is going on, but I don't want to believe it.
I love my baby- and I don't think I treat her any differently since we found this out, but I do find myself becoming immediately sad as soon as someone mentions it. Whenever Jonathan starts telling someone about her getting the aids, (because I usually will not start that conversation) I feel my mood immediately change, and sometimes I just leave the room. It doesn't help much that whenever that conversation does happen, the first thing people say is "awww... poor baby!" or "I'm sorry". Like she's dying or something. We went to a cookout on saturday, and of course I walked right into Jonathan having a conversation with friends about it.
One of the girls was a kindergarten teacher, and she was the sweetest girl I think I have ever met. She played with Zoe, talked to her... Zoe loved her. The only thing was, I am still very sensitive about this, and since they were already talking about it, we ended up in a long conversation about it. I almost felt obligated to talk about it, even though it hurts. I just want to push this away and never speak of it again, but I know I can't. It's here, and it's real, and it is not going away.
This week Zoe will be getting her hearing aids, and we are all very anxious and excited to see what happens. I know my child, so I know that Zoe is going to be a little irritated and want to pull them out every 10 seconds- but we have to make her keep them in. The doctor said the most important thing we can do is to make her understand that we are the boss, and that she never takes them out by herself- that an adult must always help her. I keep thinking about all the responsibility that is going to come with this- I hope I can handle it! I am struggling with accepting that this is happening still. I have no idea what is taking so long to move on, but I am stuck just outside acceptance. I am in a place where I know that this is happening, I understand what is going on, but I don't want to believe it.
I love my baby- and I don't think I treat her any differently since we found this out, but I do find myself becoming immediately sad as soon as someone mentions it. Whenever Jonathan starts telling someone about her getting the aids, (because I usually will not start that conversation) I feel my mood immediately change, and sometimes I just leave the room. It doesn't help much that whenever that conversation does happen, the first thing people say is "awww... poor baby!" or "I'm sorry". Like she's dying or something. We went to a cookout on saturday, and of course I walked right into Jonathan having a conversation with friends about it.
One of the girls was a kindergarten teacher, and she was the sweetest girl I think I have ever met. She played with Zoe, talked to her... Zoe loved her. The only thing was, I am still very sensitive about this, and since they were already talking about it, we ended up in a long conversation about it. I almost felt obligated to talk about it, even though it hurts. I just want to push this away and never speak of it again, but I know I can't. It's here, and it's real, and it is not going away.
Friday, March 20, 2009
Why?
Why am I still asking why? Why does it hurt just as bad when the audiologist discusses Zoe's hearing loss the tenth time as it did the first time? Today was the appointment to get ear mold impressions taken, and order Zoe's hearing aids. I am still in disbelief that this is happening- here I am, back in the denial stage again. I am grasping in vain for any hope that this is not the fate of my baby girl for the rest of her life. I asked the doctor if there was any hope of her growing out of this, and she flat out said no. She said sensorineural hearing loss is not fixable, and that we need to be proactive and just deal with the issue at hand. She is in the severe to profound range, so she's basically deaf. It's hard to just accept this and move forward- how do you do that???
Our doctor is great, though- she has been helping us from day one. She got the financing together, had all the paperwork filled out ahead of time... she's really great. Now we just wait for the hearing aids to come in- hopefully by the end of next week, when we call Zoe's name she will turn around. Now I have to start thinking about all the resonsibility that is going to come with this- I mean, I have to make sure she keeps them in and doesn't throw them in the toilet or the trash (she throws everything in the trash, LOL)- and that she understands that only a grown up can take them out... I'm sure there is maintenence and upkeep, cleaning them... it's all so much to think about at once.
I have been trying to push past asking myself "why" all the time, and accept that it is happening and it is not going away. I just can't shake the feeling of overwhelming guilt that I did something wrong to cause this. Even when I am happy, I am miserable on the inside. There is nothing like the pain of seeing your child have to deal with a disability. NOTHING. Even though she is too young to understand what is going on, the mere fact that she has to go through this is killing me inside. Thank God for her daddy, without him I don't know where I would be.
Now we just wait for the hearing aids to come in, and hope that they help her. if they don't help her, we could be looking at a cochlear implant- a surgery. Financing or not, this is expensive- and I have no idea if we are going to be able to afford whatever this throws at us now or in the future. I guess only time will tell.
Our doctor is great, though- she has been helping us from day one. She got the financing together, had all the paperwork filled out ahead of time... she's really great. Now we just wait for the hearing aids to come in- hopefully by the end of next week, when we call Zoe's name she will turn around. Now I have to start thinking about all the resonsibility that is going to come with this- I mean, I have to make sure she keeps them in and doesn't throw them in the toilet or the trash (she throws everything in the trash, LOL)- and that she understands that only a grown up can take them out... I'm sure there is maintenence and upkeep, cleaning them... it's all so much to think about at once.
I have been trying to push past asking myself "why" all the time, and accept that it is happening and it is not going away. I just can't shake the feeling of overwhelming guilt that I did something wrong to cause this. Even when I am happy, I am miserable on the inside. There is nothing like the pain of seeing your child have to deal with a disability. NOTHING. Even though she is too young to understand what is going on, the mere fact that she has to go through this is killing me inside. Thank God for her daddy, without him I don't know where I would be.
Now we just wait for the hearing aids to come in, and hope that they help her. if they don't help her, we could be looking at a cochlear implant- a surgery. Financing or not, this is expensive- and I have no idea if we are going to be able to afford whatever this throws at us now or in the future. I guess only time will tell.
Wednesday, March 18, 2009
Is it wrong...
Is it wrong, or maybe even selfish of me- to consider not having any more children? Maybe this is just a facet of the grief of losing my "perfect baby" and having to deal with a child with a disability. Since Zoe was born, I wanted more babies. I wanted a large family, as many as we can support- as my fiance says. We both wanted to have another relatively soon so they would not be so far apart in age. Now I am struggling inside with whether or not I even want to try to have any more kids. I mean, this pain is tearing me apart- how would I handle it if our next child has a disability as well? What if it is an even worse disability than hearing impairment? I just don't know if I am a strong enough person to deal with that.
Even if we do decide to have another baby, my pregnancy will be stressful and scary just thinking about all the things that could go wrong- apparently some things can go wrong and not be detected until long after the birth. Sure, when I was pregnant with Zoe, I thought occaisionally about birth defects and such, and scared myself a little- but she looked great on ultrasounds, and soon those fears faded. Now, 18 months after her birth, I have to face the reality that something is indeed wrong with my baby. "Wrong"- what a way to put it. There's nothing "wrong" with Zoe. She just needs a little help hearing. I keep trying to tell myself that. I hate that I have feelings that Zoe is no longer my "perfect" child. I hate those feelings and I hate myself for having them. I should not think that way about my beautiful little girl- she is perfect.
My internal struggle is that I very much want another baby, but I just don't want to have to go through this kind of pain ever again. You see all these stories about kids with down syndrome, cancer, and all these horrible diseases and disorders- and then you see their parents. Marching beside them in a walk to raise money for research, accepting their fate and then doing everything they can for their child- they are so strong. I wonder if I am that type of person. I think I just need my time to grieve and accept what is happening in my life. After all, this is going to turn all of our lives upside down.
So, do I accept this obstacle and have another baby (one day...) despite all the things that could go wrong? Or do I simply learn to live with the cards we have been dealt and not tempt fate? Our audiologist suggests we get genetic testing before deciding to have another baby. So now the excitement of making the decision to have a baby has been taken away from us. We can't simply say- "we're ready, let's start trying for another" like most couples would. It makes me wonder if I even want to know what would come of that testing, and what my decision would be if it was not a favorable outcome. Is it fair for me to deprive Zoe of having siblings for my own reasons?
I guess this decision is one we must make together some time in the future. It is a lot to think about right now on top of everything else we are dealing with.
Even if we do decide to have another baby, my pregnancy will be stressful and scary just thinking about all the things that could go wrong- apparently some things can go wrong and not be detected until long after the birth. Sure, when I was pregnant with Zoe, I thought occaisionally about birth defects and such, and scared myself a little- but she looked great on ultrasounds, and soon those fears faded. Now, 18 months after her birth, I have to face the reality that something is indeed wrong with my baby. "Wrong"- what a way to put it. There's nothing "wrong" with Zoe. She just needs a little help hearing. I keep trying to tell myself that. I hate that I have feelings that Zoe is no longer my "perfect" child. I hate those feelings and I hate myself for having them. I should not think that way about my beautiful little girl- she is perfect.
My internal struggle is that I very much want another baby, but I just don't want to have to go through this kind of pain ever again. You see all these stories about kids with down syndrome, cancer, and all these horrible diseases and disorders- and then you see their parents. Marching beside them in a walk to raise money for research, accepting their fate and then doing everything they can for their child- they are so strong. I wonder if I am that type of person. I think I just need my time to grieve and accept what is happening in my life. After all, this is going to turn all of our lives upside down.
So, do I accept this obstacle and have another baby (one day...) despite all the things that could go wrong? Or do I simply learn to live with the cards we have been dealt and not tempt fate? Our audiologist suggests we get genetic testing before deciding to have another baby. So now the excitement of making the decision to have a baby has been taken away from us. We can't simply say- "we're ready, let's start trying for another" like most couples would. It makes me wonder if I even want to know what would come of that testing, and what my decision would be if it was not a favorable outcome. Is it fair for me to deprive Zoe of having siblings for my own reasons?
I guess this decision is one we must make together some time in the future. It is a lot to think about right now on top of everything else we are dealing with.
Dealing with the news
So it's been 48 hours since the ABR and receiving the news of the severity of Zoe's hearing loss. I am dealing with this the best way I know how- even though that means not wanting to talk about it, shutting people out, and crying on the inside and outside pretty much all the time. OK, so maybe that is not the most healthy way of dealing with things, but I am really not sure what to think right now. Zoe is still my little girl- I love her more than anything in the world, but as my fiance can tell you, I do not deal with bad news well. I keep blaming myself, mulling over what i could have done to prevent the hearing loss over and over until it drives me insane.
Jonathan keeps telling me that I need to put those feelings aside and focus more on the task at hand- doing whatever it takes to help Zoe in whatever way possible. I understand that, I really do- but this pain in my heart is clouding my every thought. I can't concentrate at work, I sit and think about her all day- kind of like when I first returned to work when she was an infant. I wish so much that we could afford for me to stay home with Zoe so I could make sure she gets worked with, and gets the help she needs.
My friend told me that day that it could be worse- and I think I said something to the effect of "I'm really tired of hearing that today". She came back with telling me about a friend of hers who has a young boy in her family who is fighting leukemia, whose family is forced to live at Johns Hopkins while they watch their child die. As much as the news of Zoe's hearing loss hurt, her telling me that made me realize that we really are blessed to have her here- happy and healthy. She needs help hearing, but she's not going to die from it. I guess things can always be worse no matter what situation you are in, but no matter what, it's going to hurt.
I am very excited for Zoe to get her hearing aids- I can't wait to get the results of the real ear measurement, so we can know exactly what we're dealing with, and to see Zoe's reaction to finally, after 18 months, be able to hear more clearly. I wonder how much she will be able to hear, if the aids will help her right ear at all, if she has that auditory nerve and can be helped, what the future holds for her... there are so many unanswered questions. These questions will be answered in time, I guess- but it's so hard to look at her and know that she cannot hear me talk to her, sing to her... it's heartbreaking.
It's Wednesday, so only 2 more days until she sees her audiologist again. So now we just wait, like always...
Jonathan keeps telling me that I need to put those feelings aside and focus more on the task at hand- doing whatever it takes to help Zoe in whatever way possible. I understand that, I really do- but this pain in my heart is clouding my every thought. I can't concentrate at work, I sit and think about her all day- kind of like when I first returned to work when she was an infant. I wish so much that we could afford for me to stay home with Zoe so I could make sure she gets worked with, and gets the help she needs.
My friend told me that day that it could be worse- and I think I said something to the effect of "I'm really tired of hearing that today". She came back with telling me about a friend of hers who has a young boy in her family who is fighting leukemia, whose family is forced to live at Johns Hopkins while they watch their child die. As much as the news of Zoe's hearing loss hurt, her telling me that made me realize that we really are blessed to have her here- happy and healthy. She needs help hearing, but she's not going to die from it. I guess things can always be worse no matter what situation you are in, but no matter what, it's going to hurt.
I am very excited for Zoe to get her hearing aids- I can't wait to get the results of the real ear measurement, so we can know exactly what we're dealing with, and to see Zoe's reaction to finally, after 18 months, be able to hear more clearly. I wonder how much she will be able to hear, if the aids will help her right ear at all, if she has that auditory nerve and can be helped, what the future holds for her... there are so many unanswered questions. These questions will be answered in time, I guess- but it's so hard to look at her and know that she cannot hear me talk to her, sing to her... it's heartbreaking.
It's Wednesday, so only 2 more days until she sees her audiologist again. So now we just wait, like always...
Tuesday, March 17, 2009
ABR test
Yesterday was the day of the long-awaited ABR test. I was so nervous I felt sick to my stomach and had a headache all night the night before. They would have to sedate my baby girl to get an accurate result, and this would be her first sedation- which always comes with possible complications. We woke up at 5:30 am to get ready to leave for the 45 minute drive to Saint Joseph's Hospital for her 7:30 am appointment. Before I knew it, they gave Zoe the oral sedative and she was asleep in no time.
Watching them attach the electrodes to her tiny head and put things in her ears was heartbreaking. The test took over an hour- sitting in a darkened room holding Zoe's hand on a hospital bed as she slept. The doctor was silent through the whole test. After she was done, she broke the news to us that Zoe showed no auditory response in her right ear- meaning that her machine could not measure any hearing in that ear. Zoe hears at about 50 decibels in her left ear- a moderate to severe hearing loss. With hearing aids, she may be able to hear with her left ear, but they are unsure about her right ear.
It is a possibility that she may have been born without the auditory nerve on that side, in which case she will remain pretty much deaf in that ear for the rest of her life, no aids- not even a cochlear implant will really help her. They are also unsure if her hearing loss is genetic, progressive, or if it will stay the same. We are incredibly worried that it will progress further. Yesterday was the worst day of my life since the first time they told me she would need hearing aids. Now they are telling me it is worse than they thought it was, and there are so many unanswered questions.
The next phase of the journey is to schedule an MRI to see if that nerve is present behind her ear or not. That will determine whether or not a hearing aid will help her at all. We can't wait any longer than we already have to get the hearing aids, though- so we have an appointment scheduled on Friday to have another set of impressions taken of Zoe's ears, and I think we will be getting loaner aids until we can figure out how to afford this. Hearing aids are incredibly expensive, and our insurance only covers so much- the benefit is not very good. I make too much money to get medicaid or any type of assistance with these massive bills that just keep rolling in.
I have a million thoughts flying through my head at this moment- I feel lost and alone. I know we are not the only family that is going through this, and I also know it could be much worse, but I still find myself asking why. Why us? Why Zoe? I am angry, scared, and depressed. Jonathan had his moment of grief, but he bounced right back into action- wanting to know what we do from here and how we can help her. He has always been the stronger one, which has been my source of strength through all of this. I can't say how long this pain will last, but right now it hurts, it hurts bad. I have made the essential phone calls- to Dr. Horton, our pediatrician; to Dr. Henning and Dr. Robinson, our Audiologists; and to a couple friends for support. My family and friends have been another source of strength- they have been nothing but supportive through all of this, and will continue to be, and for that I thank them.
Now we wait for the next test, the next doctor, the next piece of news...
Watching them attach the electrodes to her tiny head and put things in her ears was heartbreaking. The test took over an hour- sitting in a darkened room holding Zoe's hand on a hospital bed as she slept. The doctor was silent through the whole test. After she was done, she broke the news to us that Zoe showed no auditory response in her right ear- meaning that her machine could not measure any hearing in that ear. Zoe hears at about 50 decibels in her left ear- a moderate to severe hearing loss. With hearing aids, she may be able to hear with her left ear, but they are unsure about her right ear.
It is a possibility that she may have been born without the auditory nerve on that side, in which case she will remain pretty much deaf in that ear for the rest of her life, no aids- not even a cochlear implant will really help her. They are also unsure if her hearing loss is genetic, progressive, or if it will stay the same. We are incredibly worried that it will progress further. Yesterday was the worst day of my life since the first time they told me she would need hearing aids. Now they are telling me it is worse than they thought it was, and there are so many unanswered questions.
The next phase of the journey is to schedule an MRI to see if that nerve is present behind her ear or not. That will determine whether or not a hearing aid will help her at all. We can't wait any longer than we already have to get the hearing aids, though- so we have an appointment scheduled on Friday to have another set of impressions taken of Zoe's ears, and I think we will be getting loaner aids until we can figure out how to afford this. Hearing aids are incredibly expensive, and our insurance only covers so much- the benefit is not very good. I make too much money to get medicaid or any type of assistance with these massive bills that just keep rolling in.
I have a million thoughts flying through my head at this moment- I feel lost and alone. I know we are not the only family that is going through this, and I also know it could be much worse, but I still find myself asking why. Why us? Why Zoe? I am angry, scared, and depressed. Jonathan had his moment of grief, but he bounced right back into action- wanting to know what we do from here and how we can help her. He has always been the stronger one, which has been my source of strength through all of this. I can't say how long this pain will last, but right now it hurts, it hurts bad. I have made the essential phone calls- to Dr. Horton, our pediatrician; to Dr. Henning and Dr. Robinson, our Audiologists; and to a couple friends for support. My family and friends have been another source of strength- they have been nothing but supportive through all of this, and will continue to be, and for that I thank them.
Now we wait for the next test, the next doctor, the next piece of news...
Our Story
Hi, I'm Lisa. My fiance Jonathan and I were overjoyed upon the arrival of our beautiful baby girl, Zoe Simone- on Sunday, September 23rd 2007. She was perfect in every way- from her tiny little fingers down to her pudgy little toes. We were immediately in love with her, and have been ever since. Our journey began on that day with Zoe's first newborn hearing screening test. The nurse explained that many c-section babies would not pass this test, and that we should not be concerned even if she did not pass it for several weeks following her birth, because her inner ear would retain some of the ambiotic fluid she lived in all those months. So, she failed the first test, and the second before we left the hospital.
We didn't give it a lot of thought- we just scheduled another screening several weeks down the road to give her time to get rid of that fluid in her ears, and happily strapped our new bundle of joy in her pretty pink carseat and took her home. Zoe was a wonderful baby- she slept through the night when she was just a few weeks old, ate well, and seemed to be doing well. She was always in the 90th percentile for her height and weight. She did everything a normal infant would do. We had no idea what was in store for her, for us.
We took her to an audiologist for the first of many times when she was a few weeks old. She once again failed the standard OAE test. The audiologist was not very concerned because of her age, and scheduled another test for January 2008. I was a little concerned at that point, but eased by the passive attitudes of the doctors. At 4 months old, we returned to the Audiologist for a follow up OAE test. To my relief, Zoe passed that test with flying colors. I left the office relieved and blissfully unaware of what the future held for my baby.
Months passed, Zoe grew- and developed chronic ear infections. She seemed to be on antibiotics all the time from the time she was 4 months old until after she turned one. Ear infections are common, and I took this as just part of having a baby. I had also begun to notice that she didn't really talk like other babies her age. Her vocal sounds were limited to cooing and long vowel sounds- not actual words. Other babies her age had 5-10 recognizable words. She had said "da-da" very clearly for several weeks/months- then nothing. She stopped saying that completely. Then she finally picked up "ma-ma" and i was thrilled! However, by her first birthday, this was still the only word in her vocabulary.
Our pediatrican was concerned at the frequency of the infections and Zoe's lack of vocabulary and wanted to have her ears looked at again. Shockingly, this time Zoe failed the hearing test. At this point, I was confused and scared. The audiologist said she thought Zoe was still retaining fluid in her ears, the same thing that caused all of the ear infections. She suggested we see an ENT to explore the option of tubes in her ears to allow the fluid to drain, alleviate the infections and help her to hear clearly. Which, to me, if that was the worst that was going to happen, I was fine with that. Excited, we took her to the ENT for an evaluation. The ENT said she had no fluid behind her ears, and refused to operate on her. My heart sank. Why is she failing her hearing tests, then? I was desperate for answers.
By the time Zoe was 16 months old, we were referred to YET ANOTHER audiologist in Annapolis, hoping she could figure out why Zoe was having mixed results. She performed another OAE test. From there, it was like a freight train- the diagnosis and information came at us hard and fast, and it has not stopped since. Zoe's audiogram showed a moderate to severe hearing loss in both ears. She will have to, at best- wear hearing aids for the rest of her life. They had already fitted her and made mold impressions. I was at work that day, and unable to attend the appointment. My fiance called me with the news- I broke down. I sobbed so hard I made myself sick. I left work for the day and could barely drive home. In the coming days and weeks, I flew through the stages of grief so fast, I thought I might go crazy. Denial, Anger, Depression. Denial, Denial, Depression. I could not get past this life altering news. It was like someone knocked the wind out of me. I still have not passed the anger or depression phase, but have moved more into the acceptance phase each day.
We didn't give it a lot of thought- we just scheduled another screening several weeks down the road to give her time to get rid of that fluid in her ears, and happily strapped our new bundle of joy in her pretty pink carseat and took her home. Zoe was a wonderful baby- she slept through the night when she was just a few weeks old, ate well, and seemed to be doing well. She was always in the 90th percentile for her height and weight. She did everything a normal infant would do. We had no idea what was in store for her, for us.
We took her to an audiologist for the first of many times when she was a few weeks old. She once again failed the standard OAE test. The audiologist was not very concerned because of her age, and scheduled another test for January 2008. I was a little concerned at that point, but eased by the passive attitudes of the doctors. At 4 months old, we returned to the Audiologist for a follow up OAE test. To my relief, Zoe passed that test with flying colors. I left the office relieved and blissfully unaware of what the future held for my baby.
Months passed, Zoe grew- and developed chronic ear infections. She seemed to be on antibiotics all the time from the time she was 4 months old until after she turned one. Ear infections are common, and I took this as just part of having a baby. I had also begun to notice that she didn't really talk like other babies her age. Her vocal sounds were limited to cooing and long vowel sounds- not actual words. Other babies her age had 5-10 recognizable words. She had said "da-da" very clearly for several weeks/months- then nothing. She stopped saying that completely. Then she finally picked up "ma-ma" and i was thrilled! However, by her first birthday, this was still the only word in her vocabulary.
Our pediatrican was concerned at the frequency of the infections and Zoe's lack of vocabulary and wanted to have her ears looked at again. Shockingly, this time Zoe failed the hearing test. At this point, I was confused and scared. The audiologist said she thought Zoe was still retaining fluid in her ears, the same thing that caused all of the ear infections. She suggested we see an ENT to explore the option of tubes in her ears to allow the fluid to drain, alleviate the infections and help her to hear clearly. Which, to me, if that was the worst that was going to happen, I was fine with that. Excited, we took her to the ENT for an evaluation. The ENT said she had no fluid behind her ears, and refused to operate on her. My heart sank. Why is she failing her hearing tests, then? I was desperate for answers.
By the time Zoe was 16 months old, we were referred to YET ANOTHER audiologist in Annapolis, hoping she could figure out why Zoe was having mixed results. She performed another OAE test. From there, it was like a freight train- the diagnosis and information came at us hard and fast, and it has not stopped since. Zoe's audiogram showed a moderate to severe hearing loss in both ears. She will have to, at best- wear hearing aids for the rest of her life. They had already fitted her and made mold impressions. I was at work that day, and unable to attend the appointment. My fiance called me with the news- I broke down. I sobbed so hard I made myself sick. I left work for the day and could barely drive home. In the coming days and weeks, I flew through the stages of grief so fast, I thought I might go crazy. Denial, Anger, Depression. Denial, Denial, Depression. I could not get past this life altering news. It was like someone knocked the wind out of me. I still have not passed the anger or depression phase, but have moved more into the acceptance phase each day.
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