Wednesday, November 6, 2013

Daddy's Boy

Sometimes I like to look waaaaaay back in my phone at the pictures and videos of my E when he was a baby. I flip through them and smile and laugh and cannot believe he got so big so fast. E will be 3 1/2 in December. He is tall for his age, which means we have trouble finding pants that are long enough without falling right off his little booty. He is still an incredibly picky eater and continues to live mostly off of bread and milk with the occasional chicken nugget or order of fries thrown in. We add Pediasure to his milk, he drinks a watered down mix of V8 splash juice (the one with the sneaky veggies), and he takes vitamins. The pediatrician says he is healthy and growing fine, but his diet woes are really driving me crazy. There have been a few nights where all he will eat for dinner is goldfish and milk. I am trying to be okay with that....still trying. He is doing well at preschool and his teacher says he interacts with the other children and talks to them. I have to say that it is still very frustrating to me that I can often not tell if he does not understand me or if he is ignoring me. We still use both speaking and sign language at home. Sometimes I worry that we have not done enough to achieve fluency in either language. Other times, he expresses complex ideas in either sign or voice that leave us stunned and wondering where he has been hiding all of that. He continues to excel at word recognition. We are far beyond learning and writing the alphabet now. E has shown us that he is interested in spelling, reading, and sight word recognition. As I have mentioned in the past, rather than try to press him into any mold, we take cues from his interests and expand on them. One thing I can tell you for sure is that E is NOT going to do anything he is not interested in doing. You can bribe, reward, encourage, threaten, cry...it will not work. Anyway, when we noticed his interest in spelling and his ability to pick out familiar words, I downloaded a few spelling and sight word apps for his iPad. These apps say they are for 1st and 2nd graders. E loves them and is blasting right through the curriculum. I'm not saying my kid is a genius (at least not out loud *wink), but I definitely see that kids can accomplish fantastic things when you feed their interests!

For Halloween, we didn't know what E would be. All of the costumes in the stores were pretty lame for little boys. The options seemed to be superhero or ninja. E isn't into superheroes right now and I'm not sure he even knows what a ninja is. He has been very interested in fire trucks and firemen lately, so we thought a fireman's uniform might be a great costume. Well, it sure would have been if I was into paying $30-40 for something he would wear once or twice! E has recently discovered the joys of playing the Wii with his daddy. He loves to watch his daddy play Legend of Zelda and cheer him on. He tried playing it himself, but quickly became frustrated when he couldn't find his way out of the level. So, it occurred to me that I could easily make a Link costume (that's the main good guy character for those of you who were not raised in the Nintendo era). For a grand total of about $10, my little guy went as Link and my husband was beaming with nerdy pride.

E got to go trick-or-treating for the first time this year. Usually, we just do the festival at the church, but we took him around to a few friends' houses this year. He really loved it! He went trick-or-treating with his preschool class as well. One of the items he received in his bag was a little orange Gideon Bible. He has his own Bible, but this one was just his size. He has carried his little orange Bible all over the house and insists on sleeping with it!  He enjoys pretending to read it and have us read it to him. Just so you know, it is no easy task translate King James wording into sign language!

Many of you know that E loves Mickey Mouse. A couple of weeks ago, he informed me while watching "Mickey Mouse Clubhouse," that he actually loves Daisy. I'm not sure if it is because she wears purple (E's current favorite color) or if he just has a crush on a cartoon duck, but I posted his quip about Daisy to facebook. It wasn't long after that we got a call from my Mother-in-law telling us that she had found a stuffed Daisy Duck and bought it for E. When we went down for a family wedding, she presented E with his new Daisy. His reaction:

He gave Daisy a hug and a kiss and told us all that Daisy was his girlfriend :-) Daisy now has shares a space beside Mickey on his pillow at night. His bedtime collection includes a blankie, a panda bear, Mickey, Daisy, doggy, Cayman the turtle, his mini pillow pet, and his orange Gideon Bible. It's a good thing we went with the full size bed!

Lastly, a new and heartbreaking thing has occurred. I have been put aside in favor of Daddy. For the first time in over three years, E will tell me that he wants Daddy instead of Mommy. It doesn't happen every night, but I have been replaced at bath time. Occasionally, he even chooses Daddy for his nightly cuddles and prayer time. I know it shouldn't bother me and that my husband deserves baby cuddles too, but I find it really depressing. It is especially tough after I haven't seen him all day and I come home from work to find that Daddy the parent of choice for the night. Any other moms experienced this? How did you react? It's not that he wants Daddy, it's that he will actually push me away if I try to do something that he wants Daddy to do instead. Is it just a phase or the beginning of the boy's only club??



Wednesday, September 11, 2013

It's Been a While...

It has been a little while since I've posted, so I thought I would give a quick recap of what we have been doing:

 Building Blanket Forts

Family Photos


Having a Blast at the Beach


Starting the 3rd Year of Preschool

Feeding Giraffes Through the Sun Roof

There ya' have it! That's the quick version at least :-)





Thursday, June 20, 2013

A little information...

I am often surprised at how, even in today's time, the general population knows and understands very little about deafness and hearing loss. For those of you who read this blog and are involved in E's life, I thought it was time to provide a little information that may help you to better understand...

About 1 in 1,000 children are born deaf or hard of hearing.

90% of all deaf children are born to hearing parents.

50% of the time, no known cause can be identified.

Not every deaf person is a candidate for a cochlear implant. The cochlea and auditory nerves must be intact and that is not always the case.

Not every deaf person who IS a candidate for a cochlear implant wants one.
Cochlear implants do NOT cure deafness. They are a tool that artificially simulates hearing.

With a cochlear implant, the recipient does not hear the same way that hearing people hear. "Hearing" is an active process and takes practice and concentration to "learn" how to interpret the sound input.

Not every cochlear implant is successful in terms of providing hearing and speech. The results vary from person to person. Implantation does not automatically mean a person will "hear" or speak normally.

When the external portion of a cochlear implant is not on, the implant user is as deaf as he/she ever was. Natural hearing will not be restored.

Research shows that only about 30% of lipreading is fully comprehended. Do not assume that a deaf or hard of hearing person can just read your lips. While they probably are quite skilled at lipreading, it is not precise and errors in understanding can be serious in certain scenarios. This is why interpreters must be provided when requested (medical and legal especially!).
 
Being deaf is not considered a disability in the state of North Carolina.

The majority of deaf people do not consider themselves to be disabled just because they cannot hear.

The terms "deaf" or "hard of hearing" are acceptable. "Hearing Imparied" is unfortunately still commonly used among hearing people, but is not the correct term to use.

Speaking more loudly, slowly or exaggerating the movements of your mouth actually make it more difficult for someone to understand you if they are reading your lips.

There is no universal sign language. Signed languages differ from country to country just like spoken languages.

Most importantly: ASK QUESTIONS. Do not be afraid to ask questions and gain understanding. I welcome questions. I do not welcome stares and assumptions.

Friday, June 7, 2013

E is 3!

This past weekend, E turned three. I cannot believe how fast the time has flown! We booked a small party for him at our local YMCA where we have a wading pool/water park that was perfect for E and his pals.

 Pool Party Cupcakes

Serious Cupcake Destruction

 
 Splash Attack on Daddy!

 New Big Bed for a Big Boy

My sweet E, you are now 3 years old!
Favorite activities: playing outside and cuddling
Favorite foods: you still pretty much only eat chicken nuggets and french toast and you love chocolate milk and french fries
Favorite Book: Lama Lama Red Pajama
Favorite TV show(s): Bubble Guppies and Team Umizoomi
Favorite toys/items: Blankie, Lovey, and Mickey Mouse, a ball of any kind, and your iPad

You are still great at knowing your ABCs and you sing your ABCs all the time. You are starting to recognize and "read" some words in your books. You love to pretend to read to Mommy and Daddy. You know all of your shapes and colors and can easily count to twenty. You have a current obsession with flash lights and measuring tapes. You got a real one of each from Lowe's as one of your birthday gifts. You are a master in the art of procrastination. You come up with new ways every night to try to prolong your bedtime routine. Your most powerful trick is when you tell us you want to cuddle just a bit longer. You are so sweet and give the best kisses and hugs! You love water just like your parents. Even getting you out of the tub each night is quite a struggle. You are loved by so many and you steal hearts everywhere you go. I love you my sweet boy!
 



Monday, April 1, 2013

Easter

We went to South Carolina to visit our parents for Easter. E had a wonderful time as you can see:

E helping Nana make biscuits

 

 
 Dying Eggs (only two ended up in tact)

 The dipper took too long, so he used his hand.

 Finding eggs with his cousins

 Dapper gent showing of his southern Easter finery

He's a little too quick for the camera, but he gave me a pose for just a second :-)

Monday, March 25, 2013

E's Spells His Name

video

The video starts a little late because we didn't realize what he was doing at first. E spelled his name using his magnet letters!

Thursday, March 14, 2013

I Want My EARS!

Yesterday, E had an ear infection. When I went to pick him up from the nanny's house, he was not wearing his cochlear or hearing aid. He had refused them after his nap, which is understandable being that his ear hurt. I put his devices in coat pocket and we left. Everything was fine until we started to leave the neighborhood of our nanny's house. I stopped at the stop sign and as I went to pull away, E started crying and screaming and telling me "No! Stop!" and pointing to his ears. He wouldn't explain beyond that. I stopped at the next stop sign and he calmed down. As I pressed the gas pedal, he started to point to his ears again and scream. I was baffled. Every time we stopped, he calmed down and every time I started to drive again, he pointed to his ears and screamed. I began to think that the vibration of the car was somehow bothering his infected ear. I quickly drove across town to our house with E absolutely flipping out the entire way.

When we arrived home, E got out of the car and headed down the driveway. He told me he was going to the nanny's house. I grabbed him before he got to the road and asked why he didn't want to be at home. He pointed to his ears, then pointed in the direction we go to drive to the nanny's house. That's when it hit me...he thought we left his ears at her house! I pulled his devices from my coat and showed him that mommy had not forgotten his ears. He wanted me to put them on right then and there in the middle of the drive way. After he had his ears on, he grinned, spun around and headed right into the house. He wanted his ears and he was going to get them even if he had to walk there!! If it weren't for the ear infection, I probably would have figured it out, but he was in such a fit that I thought he was actually in pain. He has always acted rather ambivalent about his "ears," so I just did not expect this from him, especially since he had not been wearing them most of the afternoon at the nanny's house. If I ever wondered if he liked using his devices or not, I think I got my answer last night! I wish I could have just followed him to see where he went when he thought he was going to walk back to get them :-)

Sunday, February 10, 2013

New Mickey Ear

E loves Mickey Mouse. When I found a BOGO coupon for SkinIt, we decided it was time for a new cochlear sticker since he has been wearing his Clemson sticker for about a year. We were disappointed to find that SkinIt only had "classic" Mickey in their designs. This would not do. Fortunately, they also have a "design your own" option. I created a template for E's processor and we made our own Mickey-ish design. E was elated! He loves showing everyone his "Mickey Mouse ear!" Thanks to the BOGO, we also have a Boston Red Sox sticker ready for baseball season :-) If you have a cochlear kid who loves Mickey too, I'll be happy to share this design file with you if you think your little one would love it too.




Monday, January 28, 2013

Stuck Inside

We had some icky weather this past weekend that kept us all stuck indoors. Little boys and cabin fever do not mix well. No activity outside of good old fashioned rough housing kept E occupied for more than about 20 minutes at a time, but here are a few of our weekend adventures:


Introduction to Safety Scissors


Automotive Drip Pan turned into a Magnet/Dry Erase Board


Popsicle Stick Road Rally 
(later became a painter's tape track since E got frustrated with the sticks not staying put)


Cornstarch Bath Tub Paint (aka colorful bath water)

We also made banana pudding since E really loves helping me mix up the ingredients. So, what are your kid's favorite "cabin fever" activities? What keeps them occupied for the longest amount of time? As I mentioned before, E's favorite game by far is wrestling with me or his Dad. I have so many obscure bruises to show for this. Unfortunately, we wear out long before he does!
 

Wednesday, January 23, 2013

Tests, IEPs and Appointments...Oh My!


Not long ago, we took E for his language testing that would be used for his first IEP (individual education profile) with the school system. At age three, he transitions out of the "Beginnings" program and starts to work with the school system for his therapy. The test did not go very well.

 First off, the language therapist was not pleased that we had chosen to continue signing with E after implantation. I explained that our goal for him was to become fully bilingual and that we felt his signing really helped his language because we could input correct pronunciation of words when we understood what he was attempting to say with the support of his signing. She clearly was not pleased with our choice to go against her advice to drop signing. Secondly, she allowed an intern to perform the test. I understand that interns need to learn and practice, but this intern clearly was not well versed yet in giving the test and I would have preferred she practice on an older child. The testing took two hours...that's right...my two-year-old was expected to focus for two solid hours. We asked for a small break for him after the first hour. I think breaks should have been built in for his age group rather than having to be requested. Nothing E signed counts at all for this test, so if he was asked a question verbally, comprehended it, but answered in sign, it doesn't count. For example, he was asked to name the picture of the elephant. He said, "ele el," signed ELEPHANT, made the elephant's trumpeting sound, then signed "E-L-E-P." That's right! He tried to SPELL it!! On the test though, it looks as if he failed the task since only "ele el" was vocalized.

After two hours of testing, he then went to a sound booth for more testing. My attention span was struggling, so I am certain his was pretty much gone at this point. They chose this day to change up the way E identified sound. That's great that they want to move to the next level, but I'm not certain we got the most accurate info this way. Everything we had heard until this point had been so positive concerning E's progress. Suddenly, not so much. The cochlear team told us that they were concerned that his hearing aid was not contributing well and that his speech was not coming along as they would like. They said it was time to think about whether or not we were interested in a second implant. My husband and I both had the knee-jerk reaction of, "no." We decided we really wanted to see what his pediatric audiologist thought at his next appointment.

Last week, we had our one year follow up with our surgeon and with the pediatric audiologist. The audiologist confirmed that E's hearing aid was benefiting him. E was able to follow verbal directions while listening with only his hearing aid. She understood our concern and resistance to a second implant and said she wanted to see what the surgeon's opinion was. Well, we didn't get to see the surgeon. When it came time for our appointment, we were told we weren't on the schedule! Yup...this is the SECOND time his scheduling staff has done this (first time was his surgery date!). I'm just glad we had piggy backed appointments because it would have been terrible to take off work and drive all that way only to be told we could not be seen! We searched for our confirmation card at home, but found that we had already tossed it. I was really looking forward to scanning it in and emailing it. We have really had some awful luck with hospital administration throughout this journey.

We were able to see the language therapists written report after the language test. E made and 84 on the test. They wanted an 85 for "average" and this test is based on chronological age and not hearing age. So tell me, why did they act like he failed??! The therapists notes insulted my husband and myself as parents saying that we had not done our due diligence with E's therapy. It went on to insult our therapist by saying that she recommended an experienced speech and language therapist. WHAT?! He meets with a therapist every Thursday in our home and he has a second therapist that observes him and works with him at preschool. I was extremely angry and offended. I am still trying to determine my course of action, but I believe I will likely be asking to have this particular woman removed from E's case. She is obviously in opposition to our choice to be a total communication family and continue both verbal and signed communication, so I feel we need a therapist that is more open to our goals for E anyway. I am confused by the suggestion of a second implant and frustrated that we were cruising along so far with nothing but praise and then BAM! We are told things are not going as well as could be. My gut instinct tells me that it is time to push back.

Change of subject...

• We are now having a bit of success with #2 potty training! So far, he will only go for me, but it's a start!
• E's list of words that he now "reads" has continued to grow significantly.
• E has discovered honey buns and thinks they are the best thing ever. They have ZERO nutritional value for him, so it's no surprise to me that he loves them :-( The good thing is that I have been able to use them as a reward for #2 potty success. They are a very rare and special treat.
• Every night, I smell E's PJ pants if he wore them the night before to make sure there was no pull-up leaks. I can tell instantly if they are not good and clean and we need to toss them in the laundry. E has observed this one too many times I guess because he has started sniffing his clothes before putting them on!
• One of the most common phrases uttered in our house right now is, "STOP chasing the CAT!"

Monday, January 7, 2013

E's First Trip to the ER

We have had quite a bit going on lately. E had a great Christmas and was completely spoiled by his grandparents and aunts. E's big gift from Santa was a new play room! We turned the guest area down stairs into a play room by building a new wall along the stairs and recarpeting everything. The guest bed has now been moved upstairs into the office. E is very excited to have his own space to play and tumble and we are very excited to reclaim our living room.

 We still have some decorating to do, but here is the play room so far. You can see E sitting in the blue bean bag chair in the middle of the pic.

 One of E's Christmas presents from my parents was a bubble machine. E loved having hundreds of bubbles rain down on him. He also is now the proud owner of every play doh tool known to man!

My husband left the morning of New Year's Day to go to the 2013 Passion conference with the college students. He was gone until late Friday night. I went to the nanny's house after work to pick up E. She very kindly offered to send us home with dinner and so I was assisting her with packaging some food. E took this window of opportunity to stand on the couch (which he KNOWS he is not allowed to do) and ended up falling backward. I heard the thump and the cry and rushed to scoop him off the floor. I was cuddling him in my lap and calming him when our nanny informed me that he was bleeding. I pulled my hand away from his head to see it covered in blood. I thought he had just fallen onto the floor, but he had clipped the edge of the coffee table. We put pressure on the cut and packed in the car for a trip to the ER. Other than a cut on his head, E did not seem to have any problems. He was eerily calm, but did excellent through the entire process. He even allowed them to papoose and suture him without much fuss. He was probably a better patient than I would have been! The doc observed him as he played games on my phone and interacted and said that he did not seem to have any effect other than a very mild concussion at worst. Three stitches, later, we were headed home. My husband was still on the road coming back from Atlanta when I called to tell him the news. By the time we arrived home, well past E's bedtime, Daddy was there to meet us with the Mickey Mouse he had purchased for E while on his trip.

E loves his new Mickey and we will certainly never forget the day Mickey arrived at our house!
 
 

 I moved the futon cushion into the play room, but have yet to move the frame. E seems to like the big cushion on the floor so much, that I'm not sure we will change it. He was very happy to have Daddy back home as you can see. We found Sesame Street "Alphabet Jungle" in the discount bin at WalMart and it has been pretty much on repeat all weekend. E's stitches are on the left side of his head toward the back. Yes, this is the same side as his cochlear implant. We were really concerned about that, but the cut is about an inch above the implant, so everything was fine.

Oh, I forgot to mention that E had gone that same day to the pediatrician for a cold and ear infections. Two doctor's visits in one day! I was feeling like an especially awful parent. Add to that the fact that E decided to take his first roll out of his toddler bed Saturday night. I was relaxing and watching TV when I heard BLAM! AHHHHHHHHH! I found that I can really move quickly! I raced into E's room and flipped on the light to find him sitting on the floor beside his bed with a very confused look on his face. I cradled him and he told me to turn the light off. He then climbed back into his bed and went right back to sleep. The toddler bed is not far from the ground at all and it has a railing, but the railing does not cover the entire length of the bed. We took E's old changing pad and placed it on the floor beside the bed. Any future tumbles will land on plenty of cushion.

Speaking of changing pad...E is now #1 potty trained!! We have yet to have potty success with #2, but he is out of diapers except for pullups during nap and night. He looks and acts less and less like my little baby every day. He is growing up so very fast. See...it's been quite chaotic around our house lately!