"Normal"

 

  I love that one of the blogs I read refers to kids with no special needs as "typical" rather than "normal." After all, what is "normal" anyway?? I've yet to meet anyone that I would describe as being normal. When I tell people that my son is deaf or when they notice his hearing aids, I have a great sense of pride. His signing vocabulary is more than fifty words. He is easy going and very happy. He is attentive and patient, which is a very rare thing for a child his age.

  My husband and I were asking ourselves today if we thought E would be the same if he were a "typical" kid. Honestly, I don't think so. I think all of his experiences in his little life have molded him. He is attentive because every moment is a teaching moment in our house. He is patient because he has had to get used to waiting in doctor's offices, being prodded and examined, and loooooong drives to get to said offices. He is happy because he has two parents who are totally invested in him in every way. Some of the things we love are just purely E, but I really think others are born from our experiences.
I grew up hearing my mom say, "normal is boring!" I really believe that, if our lives suddenly became "normal," we really would find that we would be very bored indeed :-)

The Zoo Trip that Wasn't

  We had planned to take E to Deaf Day at our nearest zoo. We thought it would take about an hour to get there. This morning, we looked up direction and found that it takes and hour to get to the zoo exit, but then an additional hour to get to the actual zoo. After spending over two hours one way in a car so often lately for E's appointments, we decided that we weren't going to do that on a day that we didn't have to. We hated to miss out, but we thought that we could all use a break from long days in the car.

  We spent a lazy Saturday instead watching college football. E was hilarious! All day long, he was cracking us up with his antics. We tried time and time again to catch some of it on video, but he would always stop what he was doing when he saw the camera. I really wish I could share some of it because he is really a little entertainer. He now does a fist pump in the air whenever he sees his Daddy get excited about something on tv. When our team won, my husband shook both hands in the air and told E to "go crazy!" You would have thought E knew exactly what he said because E then ran around the room shaking his arms in the air and wiggling all over. I think we have a football fan in training for sure.

  E also added a few signs to his vocabulary today. The favorite of the moment seems to be "camel" which he signs very enthusiastically. We have been trying to make an effort to say an animal sound after each sign now that we are adding auditory training. I drew a blank at camel and blurted out "patooey" since all I could think of was that camels spit. Hey, I haven't exactly spent much time around a camel, ok? So, what sound should we make for a camel?

Surgical Date

  We have a surgical date. November 8th will be the big day of E's surgery. We were expecting it to be sometime in December before we could get a date, but we received a call and were offered a date in October. We were surprised that it was so close and requested the November date to give ourselves a little more time to prepare.

  We had to go ahead and choose an implant in order to schedule the surgery. We begrudgingly chose the Cochlear Freedom internal component paired with the the Cochlear N5 external processor. We were told that our ENT does not yet put his faith in Advanced Bionics since they JUST regained approval. We are interested in Advanced Bionics especially due to the impending release of their Neptune waterproof processor. I have an unfortunate feeling though that we will get E's implant and about a week later, the Neptune will be released. That tends to be our luck...always a day late and a dollar short.

Can't Hear You

  Yesterday was our final day of evaluations. We had two appointments in the same day. E was not that interested in being in the sound booth and kept signing, "I'm finished." The information we recorded was not very complete, but was consistent with previous evaluations. We had to make a choice on cochlear implants so that we could move forward with scheduling surgery. Even though Advance Bionics is back on the market, our ENT wants to give them a little time before he is ready to implant them again. I guess they need to win back his trust. We opted for the Cochlear Freedom internal (the last model) with the new N5 external. We are not super happy with that since it definitely feels like settling, but it seems to be the most reliable at the moment. If Advanced comes out with their new, waterproof processor before his surgery though, we will definitely be having a new discussion.

  I found this super cute shirt at Crazy 8 a couple of weeks ago. The cooler weather and the audiology appointment seemed the perfect opportunity to wear it. It is still a little big, but SO CUTE! The audiologists loved it :-) I especially love that his expression in the pic matches his shirt!

"I Can't Hear You!!"

  A friend sent me a link to a Craigslist listing selling the complete set of Signing Time dvds and cds. We got them yesterday. The set sells for about $700 online and we got it for $100! When we picked them up, they had never even been opened. We were very excited to find such a fantastic deal. E loves the series and many of our friends are hooked on it with their kids as well. They are fantastic to keep him entertained on our long trips back and forth to his appointments.

Cool Weather Cutie

  September finally decided to show up and we have our first day today that feels like Fall. E got to wear his overalls today and I thought I would share a pic of my cool weather cutie :-)

Adventures in Parenting

  Tuesday, E had his MRI. The hospital staff was much better prepared for working with children than our previous hospital. E was even given a light up toy to take home. He was very unhappy about being poked and prodded, but he was the most upset by the blood pressure cuff that was placed on his leg. He is so easy going with so many things, but he clearly hates anything that hinders his freedom to move around.

  The testing went well and E took a while to wake up in recovery. The test coincided with his usual nap time, so even after the medication was no longer in his system, he was still interested in sleeping. He would wake briefly, take a sip of juice, then drop right back off to sleep. When he did wake fully, he was still very groggy. It was really hilarious and I wish we had filmed it :-) E would smile and laugh and the laugh would come out "haa haa Haaaaaaaaaaaaaaaaaaaaaa." If a voice was dubbed in, you could have imagined him saying, "I love you man...no really...I know I don't tell you this often, but I really love you dude." After seeing him sign, "more cookie please," the nurse told us that he had a 16-month-old at home and asked us how he could begin signing with his son. He was very impressed by E's ability to communicate with us at his age. I love that E is becoming a little ambassador for teaching sign language to babies!

  E did well with juice and animal crackers after recovery and so we were told that we could go ahead and give him some milk. Bad idea. About an hour down the road, E suddenly rejected the milk. There was nowhere to pull over, so I was out of my seat, leaned into the back seat, trying desperately to clean up my child and his car seat. E was fine and asking for more juice, but now the car smelled like spoiled milk. Every parent out there knows that smell. It's not something you will forget. We stopped as soon as we found a Target and went in to buy him a new outfit. He wanted to be held of course, so I was having to walk around holding a wet, smelly baby. I love him so much, but he reeked! We found an outfit on clearance since they had already put away all of their summer clothes and changed E when we got back out to the car. Crisis averted! One new outfit and a ton of baby wipes later, we were all clean and back on the road. At the end of the day, we were exhausted parents, but E was running on all 8 cylinders  
and happy as always.

  Now, for a bit of good news....our deck is finished! Thank you SO much to the men from our church that volunteered their time to help us build a new, safe deck. The new deck is BEAUTIFUL and E really loves playing outside on it.

Lovely New Deck

"I LOVE IT!"

E playing with his ghetto sandbox (don't judge)

  We got another bit of news when we got home from the MRI. Advanced Bionics is back on the market with their cochlear implant. This was very good news since Cochlear just issued a voluntary recall on their newest internal component. Cochlear is also still available, but they are recommending that the new processor be used with the previous model implant, which seems less than favorable to me. So now, all three brands are available in some capacity. The innovative new water proof processor being developed by Advanced Bionics is also expected to hit the market very soon. Hopefully, E will have some really great choices when it is his turn to be implanted!

E's Ears 101

  Many of the people in our lives had never even heard of a cochlear implant before they heard us talk about it. There is a lot of lingo and jargon associated with hearing that has entered our daily conversations lately. Noticing the increase in glazed eyes and confused head tilts, I thought it might be helpful if I wrote a blog specifically explaining a few things. I hope this helps a bit.

Audiogram: a graph used to plot the threshold of hearing

You will notice that data consists of frequency (Hz) and volume (Dbs). Sounds are presented in a sound booth and responses are recorded on the audiogram. The dotted line is what is commonly called the "speech banana" and represents the general level at which various speech sounds are registered. Os and Xs are used to represent the right and left ear when charting responses. More in depth information can easily be found by typing "understanding an audiogram" into your search engine. 

What is Sensorineural Hearing Loss?:

Hearing loss is typically classified as either CONDUCTIVE or SENSORINEURAL. Conductive hearing loss means the sound is not effectively transmitted through the outer or middle ear to the cochlea. A perforated ear drum would be an example of a cause of conductive hearing loss. E has sensorineural hearing loss. A lack of what are called "hair cells" or damaged hair cells in the cochlea are a common cause of sensorineural hearing loss. Sensorineural hearing loss is related to the function of the cochlea and the auditory nerve. MRIs are typically used to assess the inner ear function.

What is a Cochlear Implant?:

   To understand what a cochlear implant IS, you must understand what it IS NOT. A cochlear implant does not "cure" deafness. A deaf person is still deaf when the device is not in use. Not all deaf people are candidates for a cochlear implant. To be a candidate for an implant, one must have an intact and properly formed cochlea as well as a functioning auditory nerve. A cochlear implant is not a simple or default decision. An implant requires surgery and is subject to all of the inherent risks of surgery. One of the most unsettling is a slightly increased risk of contracting meningitis. Choosing to implant our child is a decision that was certainly not taken lightly. A great deal of research as well as discussions with parents of deaf or HOH children (implanted and not) and deaf or HOH adults (implanted and not) took place before making our decision for E. 

This video explains how the implant works:

There are three brands of implant available in the US from which to choose. These brands are Cochlear, Advanced Bionics, and Med El. Unlike most medical implants, the implant recipient (or parents of the recipient) are typically allowed to research the three options and choose which implant they would like to use. The following are links to each brand's website where further information on each implant can be found:

Cochlear

http://products.cochlearamericas.com/cochlear-implants/nucleus-5-system

Advanced Bionics

http://www.advancedbionics.com/com/en/products/hires_90k_implant.html

Med El

http://www.medel.com/us/show/index/id/73/titel/MAESTRO+Cochlear+Implant

The best resource I have found thus far comparing the brands is this blog post:

http://funnyoldlife.wordpress.com/cochlear-implants/choosing-a-brand/

As much information as I have presented here, this is just the tip of the iceberg on all that is available. It is easy to see why a great network of support is needed when parents are faced with such decisions for their child. 

What Do I Do Now?

  I will be unemployed at the end of the year. I have worked as a graphic designer for the company for over five years. For the past three years (after we moved for my husband's job) I have worked from home. I was informed yesterday that I will be laid off at the end of the year. It has nothing to do with my job performance or quality of my work, but rather that the company no longer thinks it works for them to have someone unable to be present in the office. I may still be utilized as a freelancer from time to time. Our family income will be severely diminished. Fortunately, I have until the end of the year to try to figure out a plan. Unfortunately, the outlook for employment around our area is not good. If you have any leads or connections, I am certainly interested!

  On another bummer note, we found out today that our options for cochlear implant brands may soon be extremely limited. There are three brands of implant. One of the brands is currently off the market via voluntary recall and they are working to release a new and better model. The brand that we had intended to choose is experiencing some issues and may very well be recalled for re-engineering. That leaves only ONE option and it is NOT the one we would have chosen. We feel that using this brand would certainly be settling and when it comes to our son, we do not want to settle. Our hope is that the other two brands get their acts together and get a new edition on the market before E is ready to receive his implant. E did great at his appointment today though and we are one step closer to having all of the medical evaluations complete.

God does everything for a reason.   - Yes, He does. At the moment, we just wish we could know what that reason might be.

God has a plan.   -  I'm sure he does. We are ready to do whatever is asked, we just do not know where to start.

Everything will be fine.  -  Um, ok....thanks.

Wow, that really sucks.   -  This is probably my favorite response because it is so very true. Sometimes, the best thing to do when someone is feeling down and out is to simply validate that they are completely within their rights to feel that way about the situation.

Just pray about it.  -  We are constantly in prayer over all aspects of our life. Please pray for us as well that we will be given clarity and direction.

First Day of Preschool

  Today was E's first day of one-year-old preschool. He will be attending two days a week for half a day. He had a great first day. We were told that he signed and babbled non-stop and had the other kids mimicking his signs. He played the peacemaker and went around the room passing out toys to anyone that looked unhappy. It certainly makes me proud to know that my little man was outgoing, adaptable, and ready for new challenges!

E's backpack

Ok, I'm ready!

Let's do this!

raspberries and grins for Mommy

Happy Accidents

  Before his bath each night, we have started sitting E on the potty and reading a book. We are not actively trying to potty train. E is only 15 months old. We are just trying to get him used to the idea of the potty and give it a fun connotation since I have heard other parents say that their toddler is scared of sitting on the potty. Last night, E's potty sitting time coincided with a need to tinkle and he went in the potty! He of course did not know what he had done that was so great, but we made a HUGE deal out of it and then let him push down the handle himself to flush. Hopefully, with time, he will make the connection between eliminating in the potty and the praise he receives. If he does, potty training should evolve nicely!

  For the Labor Day holiday, we took E to the mall. E was less than happy about being in a stroller. I was trying to shop for him in Old Navy when he had a minor melt down over being trapped in the stroller. His dad took the stroller and went on out into the mall while I finished looking. A little while later, as we were shopping in another store, my husband started laughing and said, "you're a THIEF!" He held up a baby shirt that I had laid on top of the stroller while I was managing the fuss with E. When he took the stroller, neither of us had noticed the shirt. I have NEVER in my life stolen ANYTHING and I freaked. I could just imagine in my head a huddle of people going over security tape and talking about the shoplifting mom. We went back to the store and immediately placed the shirt back in its proper location. I am just glad it was an inexpensive item that didn't have that security tag thingy on it! Is "mommy brain" a valid defense in court??

Men at Work

  It has been an interesting weekend around here. It started with me asking my husband, "have you noticed your shower is not as hot lately?" We thought we were just going to have to replace the elements in the water heater...no big deal right? Ha! My husband spent his entire day off trying to get those things out. After a few trips to Lowes and several minor injuries, he decided it was time to call the plumber. The plumber gave us more news. It isn't just the elements that are a problem. A new water heater was needed. So, now we have a new water heater. Don't ya just love unexpected home ownership expenses?!

  Today, the men from our church's Baptist Men's Group came to help begin the renovation of our deck. The deck on our house was not to code when we bought the house. It was never a big issue for us until now. E couldn't play out on the deck because it was nowhere close to being safe for him. With the cooler weather coming, I am really looking forward to being able to sit out on the deck with my little man. Once it is complete, I think a little sand/water play table may be a perfect accessory :-) Take a look at this pic of the rebuilding in progress and see the nasty, unsafe old deck and the lovely new deck-to-be. Check out the gap between those railings!

  We had the opportunity to meet up with a dear friend and her son for a little play date this evening. The outdoor playground was just too hot, so we headed to Chik-fil-a for some indoor fun. E got a nasty bump to his head, but peach milkshakes and a friend to play with made everything OK. E also decided that he would wear Daddy's hat and cheer on his Clemson Tigers!

C-L-E-M-S-O-N! Fight Tigers! Fight!