Tuesday, August 30, 2011

Nap Hair

  You know you just had a great nap when your hair looks like this when you wake up:


Off and Running

  Well, I was right. That feels REALLY great to say! I was right in thinking that October was too far out for E's MRI appointment. A conversation with the scheduler for the cochlear team confirmed that the MRI was definitely scheduled too far out and would be rescheduled. I received a call yesterday in which we scheduled E's next four appointments. These appointments will cover everything needed prior to the surgical consult. We are going to be making a trip once a week for the month of September. Every time I think about it, the song lyrics, "Wake me up when September ends" play in my head.

Monday, August 29, 2011

This is My Shocked Face

  E's nanny just emailed me this pic. It's a bit blurry (I guess you see a trend here on getting pics of him lately), but as I've said before, he is a quick one these days! This face cracks me up :-)


Wednesday, August 24, 2011

Say What?!

  Ok, so we have been scheduled for our MRI. We were called and given an appointment for October 10th. Say whaaaaaaa?! That doesn't sound like the "fast track" to me! What happened to "critical development" time? We are still waiting to hear back on our appointments for other evaluations with the cochlear team, so maybe they want to do everything else first and the MRI is the final step before surgical consults? I guess we'll see. If I find out though that October is our next appointment, somebody is going to have to explain to me the thinking behind that one.

  In other news, we have coffee in our household again and the hubby is a much happier man. I gave my husband a Keurig single cup coffee maker last year for Christmas. It is probably the best gift I ever gave him (or at least the one that gets used most). He drinks his coffee WAY stronger than I can stand it, so the idea of making only one cup at a time and choosing your strength really appealed to me. I also had my own motivations...no more spilled coffee grounds on my kitchen floor!! I've gotta say, I am pretty in love with that little machine. We order his coffee online because he prefers a coffee named "Jet Fuel". I am not kidding. We are not morning people. It finally arrived in the mail yesterday and all is right in the world again for him.


  Speaking of the planet shaking, we had an earthquake yesterday! We live in NC, so this is obviously not a usual occurrence. I was on a video conference for work and started to feel my house vibrate. I had to stop the meeting by saying, "Um, just a second guys....my house is shaking." I went downstairs to the basement thinking that perhaps my husband had put a load of laundry in the machine and it was off balance and migrating across the floor. That's really what it felt like. Of course, my washing machine was not on and it took me a few seconds to come to the conclusion that the earth had actually been shaking. As a southern girl, it just did not even dawn on me at first to consider an earthquake. E didn't seem to notice at all other than the fact that his playing was interrupted when his nanny snatched him up, prepared to run. She later admitted though that she had no clue where she would be going :-) 

  Now that we know that E should be registering some speech sounds, we are having to shift gears and add auditory training to our routine. This is very strange for me. I have to say, I feel really odd focusing on voicing information and sounds. "Do you see the doggy? The doggy says WOOF WOOF! Can you say WOOF WOOF?" E has excelled with sign language. I am kind of frustrated to be starting over a bit with the addition of the listening exercises. Until Monday, I really had not given extreme focus to sounds because I had no reason to think he was hearing them. He still does not seem to really pay much attention to sound, but that will just come with time I guess. He does seem to be mimicking the VROOOOOM sounds we make when we play with cars. It is so difficult for me to try to figure out what he heard and what he may have simply ignored. I know this might sound strange, but I think it was easier when we didn't think he heard any of it. We have always voiced along with our signing, but now, it seems like I find myself talking CONSTANTLY and honestly, I annoy myself!

  I really love E's new way of reacting to things that interest him. He makes a huge surprise face and sucks in air. He has to then look at my husband or me as if to confirm that what he is seeing is indeed as exciting as he thinks it is. He gets so excited! I can't help but wish things still made me react that way. Wouldn't life be great if we still got that excited over bubbles?

Monday, August 22, 2011

On The Road Again!

  Today was our first meeting with the new hospital team. It was a very looooong day. We left our house about 10am for our long drive. E usually takes his nap for the day around 10:30 so we were hoping he would sleep most of the trip. He slept about 30 minutes. Thank goodness we had borrowed a portable DVD player.

  Our appointment was at 1:30. We met first with our new audiologist. E was wonderful and gave us a stellar audiogram! The audiologist was thrilled that we were able to get a full, very accurate audiogram as well as a bone conductivity reading. He entertained us all with his fascination with bubbles and by waving at the animals in the light boxes when he heard a sound. I snapped a few blurry pics with my phone of his reactions. He's quick!



"Oh my gosh! Bubbles!!!"

  We were able to get some really great information. His right ear is responding even better than previously thought and our audiologist thinks that he may be able to hear speech with his hearing aid. For the very first time, we got a response to sound in his left ear. It wasn't much at all, but that is the first time we've gotten ANYTHING in that ear. 
  
  Next, we met with our new ENT. We had to wait for about half an hour in an office before we could see him. There were no toys and a ton of equipment with buttons that E was just dying to push. It was a tough wait for a sleepy toddler by this point, but he did really well. After the very brief meeting with the ENT, we were told that it was the recommendation that he meet with the cochlear implant team for consideration of the left ear. We also were given information which indicated that we have wasted both time and money in the past due to the mismanagement of our case by our former ENT. Our new ENT was clearly a bit frustrated and said that E is at a critical development point and should have already received his implant. I wish I knew why things have happened for us the way they have, but I just have to trust that there was a reason we were delayed. We are being put on the "fast track" for testing and evaluation. Our next steps will be to get an MRI, EKG, and meet with the cochlear team. We found that the CT scan that was done previously was pretty much a waste other than to just tell us that the BONES in his ear are fine.

  After the meeting with the ENT, it was time to go back to audiology for new ear mold impressions and hearing aid adjustments. By this time, it was 6pm. We will have to wait for a call to schedule our next appointments because everyone in scheduling had already left for the day. We were able to get a lot of good information today and we are back on the wild ride that is our life. By the way, our new audiologist just so happens to be world renowned. She is frequently asked to come and speak in various countries on pediatric audiology and hearing loss. Yeah...she's kind of a big deal :-)

  E was one super tired baby by the end of the day and was out like a light before we even got far from the hospital parking garage. He only slept about another half hour. We finally arrived back home around 8:30pm and tucked in a very sleepy little boy. As it stands, we are waiting to hear back to schedule our next appointments. We are beginning a journey that will hopefully lead to a cochlear implant for E's left ear by the end of the year. We will continue to gauge his progress with the hearing aid in the right ear and it is not considered at this time to be a cochlear candidate. When we were asked our goals and hopes for E, we said that we simply want to give him all the tools and opportunities we are able. What he does with them is up to him.
  


Wednesday, August 17, 2011

Food, Glorious Food!

  I just made a batch of Nutella cookies. Oh, SO GOOD right out of the oven and so simple to make! I had never eaten Nutella until my husband and I went to Italy for our two year wedding anniversary. The stuff is a regular condiment over there and is found on pretty much every table. Chocolate and hazelnut heaven is what this stuff is! Here's the recipe if you want to give it a shot:

1 cup Nutella
1/2 cup Sugar
1 cup All-purpose Flour
1 egg

Preheat oven to 350 F. Blend all ingredients well. Form into 1" balls and place on cookie sheet. Press down firmly with the bottom of a glass. Bake 7-8 minutes or until set.

  Now, on the subject of food, E does not seem to be interested in transitioning away from baby food. Some days, he eats well and others, he turns his nose up at anything that doesn't come from a baby food jar. I just don't get it. The same foods that he devoured on one day are gagged and spit out the next. I am finding myself preparing so many different items trying to find one that he is willing to eat. Logic tells me that I shouldn't give in, but I worry that he isn't getting enough to eat unless I do. At first, I thought he was just not ready for the bigger solid foods, but he proved me wrong by chowing down on baked chicken. Anyone have any suggestions? How do you get a picky toddler to eat?

Monday, August 15, 2011

Daddy's Home!

  The summer traveling is finally over! My husband had a week of youth camp, an eight day mission trip to New York, and another week long mission trip to Boston. They were all lumped pretty close on the calendar. We are very glad to have him home to stay for a while! E missed his Sunday naps with Daddy.


  My sweet husband brought me home some fabulous shoes from the New York trip. From the Boston trip, he brought me a very unique Red Sox shirt. My step-mother is from Boston and converted us to Sox fans about eight years ago. He spotted this shirt at Fenway Park:


Isn't it great?! Red Sox in sign language :-) Too bad they didn't have it in E's size. Does he win the most thoughtful hubby award? I think yes.

   E has added a few more signs to his vocabulary and has started to really use his signs to express his desires. At church last night, E signed to his daddy that he was ready to leave and go to bed. We were astonished that he is using more than one sign together to express his thoughts and that he would actually WANT to go to bed!


Saturday, August 13, 2011

It's Amazing!

   The Hallelujah chorus is playing in my head! I don't know what happened, but my son gave me a wonderful gift on this Saturday morning. He woke sometime around sunrise, took a few sips of something to drink, then went back to bed. The next thing I know, I am waking up on my own and looking at the clock. 9:30 am.....WHAT?!!!  I turned on the video monitor to check on my very quiet little boy in his crib. He had found the paci that put in the corner of his crib and was happily rolling around playing with his blanket. He was quietly, and blissfully entertaining himself. I am not sure how long he had been awake. He typically wakes about 7 am, but he never made a peep this morning. I am not sure why this amazing event occurred, but it gave mommy over two extra, wonderful hours of sleep! I will not question the magic of this moment! Maybe he just somehow knew that mommy needed a "time out" :-)

Thursday, August 11, 2011

Parents Magazine Cochlear Article

Parents Magazine featured an article on cochlear implants in toddlers:

http://www.parents.com/toddlers-preschoolers/health/ears/toddler-gets-cochlear-implants/?page=1

Tuesday, August 9, 2011

"Toddler" is Not the Right Word

   
  So, my son is walking and is now a "toddler" I guess. That word makes you think of cute little wobbly steps and giggles. To me, "toddler" translates "exhausted mommy." He is all over the place and into everything! Now that he can walk, he wants to do everything on his own. He does NOT want to be carried and don't even THINK of putting him in a stroller or shopping buggy. He wants to explore though and has no intention of politely tagging along behind mommy. I used to feel like a gold star mom when I took my son with me into stores. Well, that was good while it lasted. My easy-going, perfectly behaved baby is now a toddler on a mission. Trying to wrangle him makes me look deranged and sweaty. I feel certain that, to the outside world, I look like a terrible mom with no control over her kid. I have to laugh when other moms give me that knowing nod and sympathetic smile. We all know what this stage is like, but in the moment, it doesn't make you feel any better. He's still very sweet and good tempered, but he is just a tornado of action now!

   I made a quick trip to Kohl's the other day to buy some shorts for E that were on a great sale. I was silently thanking God that E had consented to being carried and was happily and quietly along for the ride while I shopped. Toward the end of the shopping trip, I felt something tap my back and realized that at some point, E had plucked a giant bra as we were passing a rack and had been carrying it around with us. I had to let him stand for a second to be able to get the bra from him. This moment of standing seemed to remind him how much he loved to walk and led to a struggle to hold him when I picked him back up again. I finally just said, "whatever" and carried him super man-style with my arm around his middle. While effective and surprisingly OK with E, I was certain I looked like a crazy, terrible parent.

  I took E to a deaf social this evening. He was of course not at all interested in sitting in my lap to eat or chat. He was in full exploration mode. I spent the entire time hovering around my little explorer trying to keep him out of everything. Once again, I felt like I was DEFINITELY not the one in control. When I got home, I really put the icing on the cake when I realized that, in my rush to get E dressed and out the door, I had put his shoes on the wrong feet. Way to go me....just awesome. I remember as a kid sometimes thinking that my mom was crazy. I now realize that I am certainly the one that made her that way! At least bouncing against the padded walls might be fun when they come to take
me away.

Monday, August 8, 2011

Yes, I'm Crazy

  I chased down a family in Walmart Saturday. I saw them signing and made a bee line for them. I introduced myself, my husband, and my son and had a pleasant conversation in sign language with them. I was so excited to meet them and E was excited as well. He is drawn to people that sign to him. He was blowing kisses to them :-) When we finished our chat, my husband looked at me and told me I was crazy. He said I probably scared them to death by being the crazy, overzealous lady that ran them down in Walmart. They seemed pleased to meet us, but I started thinking about what I would do if someone came running up to me saying, "you're blond too!!! It's so nice to meet you!" Now, granted being blond isn't quite the same thing, but you get the idea. I get very excited to meet other people that sign. I am always looking for an opportunity to learn more about the world in which my son lives. Has this turned me into a creepy, crazy lady? Fortunately, one of my friends knew the family and was able to tell them that I was glad to meet them and sorry if I came across too strongly. They thought my concern was funny and said that I had not frightened them.  I was glad to hear that my husband had been wrong and that my excitement to meet them had been well received. Having a super-cute toddler blowing kisses never hurts either!

Thursday, August 4, 2011

So Many Signs

  E loves being outside. He is ALL boy when he is outside with his doggy. Thanks to our muggy southern weather, this is what his hair looks like after playing :-)


  I decided to compile a list of the E's current signing vocabulary. These are only the signs he actually uses himself. I did not include the ones he understands, but does not sign.

daddy, mama, apple, airplane, cat, dog, duck, elephant, giraffe, monkey, yes, please, thank you, bed, go, ball, car, all done, milk, deer, hat, bug, tree, lion, fish, I love you, come, play, eat/food, drink, more, baby, light, cookie, horse, potty, book, grandpa, hurt

That's 39 signs that make up his current vocabulary and he adds more every week. I am so proud of my little man :-) I think that is a pretty impressive vocabulary for any 14-month-old!


On another note, I have a new ringtone for my phone! We recorded E laughing the other night and my husband turned it into a ringtone for me. Now, every time someone calls me, I get my own fit of the giggles as I listen to my little boy's laugh. It brightens up those around me as well. A baby's laugh is just contagious to everyone. Hands down...best. ringtone. EVER.

Wednesday, August 3, 2011

Whoops Wednesday

  Well, I missed the Ten on Tuesday. Things are just a bit too busy lately. I think I might have to stop the Ten on Tuesday because I really cannot come up with ten things lately that I think I should share. I will just go ahead and share what I can for now...

1. Shopping with E has really changed. He walks really well now and so all he wants to do is walk. He doesn't want to ride in the buggy. He doesn't want to be held. We tried out his backpack leash for the first time last night in Lowe's. It went really well until he realized that he had to walk where I went and not where he wanted to go. He finally became so frustrated that we cut the shopping trip short.

2. I have discovered Pinterest.com and I am obsessed! It is a way to basically keep up with all the great ideas you find online in one place. You can also look at other people's "pin boards" for ideas. I have found SO many amazing ideas!

3. I just adore my little boy. He is such a cuddly cutie. Sometimes, I am just flat out overwhelmed with the cuteness :-) When he plays, he stops every few minutes to come and snuggle me, then he goes right back to playing. I just love that he just has this moment of , "OH! Mommy! I love you!.....now what was I doing again?"

4. We have our first appointment at the new hospital with the cochlear program on August 22nd. We may find ourselves back on the fast track of chaos at that point. I do not know how quickly things will progress, but we are beginning to try to mentally prepare for the many long drives ahead of us.

5. E has texture issues with food. The transition to table food is not going so well. It is a huge guessing game to figure out what flavors and textures he will eat and which ones will send him into a gagging fit. Apple sauce, for example, is a definite no go.