E's Spells His Name

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!

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 :-)

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.

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!

 

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!"

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!

Letter to My Baby

My sweet baby E,

I wanted to write you a note today to tell you just how wonderful you are. Every day, you do new things and I really wanted to write them down for you to read one day when you are grown and for me to read many times as the years pass to remind myself of this time.

You are two-and-a-half years old now and you are a ball of energy. It seems that you do something new and amazing every day. You are so smart and so incredibly sweet. Your laughter is infectious and you love to play tickle monster with me. I have been pleased at how your signing and your speaking has developed so far. You are a little sponge and you love to learn. You amazed your Daddy and me recently by showing us that you recognize written words and their meaning. I wouldn't call it reading yet, but when you see words like CAT, DOG, or HAT, you know exactly what they mean. You picked that up all on your own.

You have an obsession with the alphabet and have been saying and signing all of your letters for quite a while now. Your favorite letter always has been and continues to be O. We are not sure why other than it was one of the first letters you learned. You will go through and dig out all of the Os and set them aside from other letters in your blocks and you love to draw Os. Speaking of drawing, you are quite talented for your age when it comes to art. You are very particular about your drawing and painting. You really enjoy drawing smiley faces and letters most. You also enjoy making me draw things for you as you call out what you want to see next.

You are a creature of habit and routine. You get that from your Daddy! You are VERY particular about all that you do. You line up your matchbox cars just so and you sort them by size, color, and kind. Woe to anyone who moves one without your permission! You have had the same bedtime routine since you were six months old. You know how it goes and insist that it be followed exactly. If we get something out of order, you go so far as to correct us and start from the beginning again with a quick pretend of anything that we have already done. You will even climb your step stool and pretend to brush your teeth again to keep the order correct. This is hilarious and, honestly, mildly disturbing :-) Your current routine is brush teeth, bath, towel cuddles, pajamas, read your Bible, say our prayers, turn on your sea horse glow toy, and kisses good night. You recently decided that YOU will "read" the Bible to your Daddy and me rather than the other way around. You always read us the creation story because it has all the animals in the pictures.

You are so very sweet. I know you will grow up all too quickly, but for now, I truly love this time in your life. You are so full of wonder. You love to snuggle and give the best hugs and kisses. Just last night, you gave me hugs and kisses and signed to me, "Mommy, I love you" without being prompted or trying to bribe me for anything. You tell us you love us all the time, but usually after we have said it first. It melted my heart and if you HAD been trying to bribe me, it surely would have worked! I hope you always keep your sweet and loving disposition. Everyone always comments on how you are the happiest and most loving little boy they have ever seen. I don't think there could be a nicer compliment for a mom than that. I am SO proud of you, my sweet baby boy. You bring smiles to everyone you meet. You are also quite a little comedian and keep us laughing at your antics on a regular basis. You never fail to make me howl with laughter on a daily basis.

You are growing up so fast! We changed your crib to a toddler bed on Thanksgiving night. We did it not because you climbed out, which you very surprisingly never did,  but because you were getting to big and heavy for me to lift in and out of the crib. You have done great in your "big boy" bed. You have yet to fall out and you you stay in your bed waiting patiently in the morning for Daddy to come and get you. As much as you wiggle and move, I am very shocked we haven't found you sleeping on your floor every morning!

Here are a few of your latest likes and dislikes:

Like: chicken nuggets, waffles, pizza, greek yogurt, marshmallows, chocolate milk, and french fries
Dislike: pretty much anything remotely healthy (other than the yogurt)

Like: iPad, drawing and coloring, matchbox cars, blocks, books, puzzles, and play-doh
Dislike: loud and obnoxious toys...oh wait, that's what Mommy and Daddy dislike ;-)

Like: looking for worms, your dog Abby, sliding, swinging, and running through the leaves
Dislike: spiders and mud on your hands

Like: Mickey Mouse Clubhouse, Signing Time, Hercules, and Tom & Jerry
Dislike: anything Mommy and Daddy are trying to watch

Like: wearing capes, hats, hoodies, costumes
Dislike: wearing socks

There are times when I am so in awe of you and the love that I have for you that I wonder how I can even manage it. There will be days that you don't like me very much when you are in trouble or when I am having to tell you, "NO." There will be days when I might not like YOU very much either (probably around the age of 16) ;-) Those are the days I hope you can look back on this blog and these notes that I write to you and know how very much you are loved. You, my precious little boy, are loved more than you will ever know...until they day comes that you have a precious little one of your own.