Wednesday, November 30, 2011

Activation Video!

  Here it is! The volume is really low because in his excitement, my husband accidentally held his phone with his hand over the speaker :-) You don't need the sound though to see the reaction (ironic isn't it?). Watch as E stops playing and points like, "Did you do that? Where did that come from? Hey, you on the wall...did you do that?? WHAT is that? Oh, it's done. Back to playing."

video

Tuesday, November 29, 2011

My Cochlear Kid

  Yesterday was activation day! E received the external portion of his processor and began receiving sound input in his left ear. We filmed his reaction, but we have to edit the video before it is ready to be posted and we haven't had time yet. I would have never imagined all of the equipment we would have when we returned home. That little implant comes with a LOT of equipment and information. As I lay in bed last night, I turned to my husband and asked, "Did you ever imagine that our lives would revolve so much around batteries?!" Let me introduce you to our new cochlear life:


  This is E's brown processor. He has two. One is brown and the other (the back-up) is gray. E is wearing a special "Ear Huggie" to help the processor stay on this active toddler. The part behind the ear is the processor and the battery. The battery is actually the largest part of the processor. The processor is attached by a cable to the "coil." The coil connects by a magnet to the internal portion of the implant. The coil transmits the sound information to the internal component through the skin. When his hair is over it, you cannot really see the coil. There is of course no way to hide this thing and we do not intend to try. Skinit now makes designed covers for the processors and we look forward to getting him a nice, bright design to wear after Christmas :-)


The processor also comes with a "remote assistant." That's right...my baby is remote controlled! This device communicates with the behind-the-ear processor to let us know that everything is working properly. It allows us to control the processor without touching it and notifies us of any issues. This is a big deal since E is too young to properly communicate to us that something is not functioning as it should.


We have a special charger that we plug his batteries into each night. We have four rechargeable batteries. The short ones last about 14 - 16 hours. The big ones last longer, but add a lot of bulk behind the ear. We also have a few disposables for emergency back-up. We are finding ourselves VERY reliant on batteries these days.


Every night, we put his equipment into a special electric drying box. Moisture is the great enemy of hearing devices. These things are basically tiny computers and as you can imagine, moisture can really build up from body heat and condensation. We place his devices in this little baby every night and they get sucked dry :-)


The processor seems kind of big when you see it sitting behind E's ear until you consider all that it does. It's pretty amazing that something that size can compute and process sound and transmit it to my son's brain. That little bitty thing comes with a TON of information and accessories. We were sent home with this suitcase of stuff. There are replacement parts galore, manuals, stickers, trouble shooting guides, mp3 cables, etc. Each one of the little boxes at the top is another part or accessory. Yeah. You can probably imagine the look on our faces as we looked through all of this. As another CI parent once told me, "it's like putting a diamond tennis bracelet on your toddler and sending them off to play." I now have terrifying thoughts of combing through my back yard searching frantically for CI pieces.

There are other things we have to consider now. Static electricity is also an enemy for a CI wearer. E will not be able to play on plastic slides unless he takes off his processor. I joke that we will spray him down with anti-static spray and put Bounce sheets in his pockets. I keep telling myself that I am really only joking, but I'm not sure. A green light blinks on the processor indicating that it is working and receiving sound. We are having to get used to the idea that our kid blinks. I guess if the processor ever falls off outside, we can just wait until dark and look for the blink. I look forward to letting you all know how E progresses with his cochlear. He will be wearing his cochlear on the left ear and a hearing aid on his right ear. I'm sure we will be in for quite an adventure!







Monday, November 21, 2011

Fearless

  I think we have a dare devil on our hands. E is not afraid of ANYTHING. You know how most kids will explore, but only if they can keep a parent in sight? Not my E. He's off to the races and doesn't care who is around as long as they do not stop him from moving. While at a friend's house, E discovered their scooter. He climbed on immediately and (with Daddy's help for safety) sped around. The faster he went, the better. He is all about balancing on the tallest thing he can find or just generally making adults panic. I think we may have stitches in our future as he grows up. My kid doesn't know the meaning of caution and has never heard of fear.


Dunking with Daddy



Faster!



Balance and Speed

Thursday, November 17, 2011

Post-Op

 We drove two and a half hours and spent a little time in a traffic jam. We waited in the waiting area for an hour and a half. We saw the doctor for about ten minutes. We drove another two and a half hours home. Could we have just Skyped that visit?? Everything is healing well and looks great. The bandages are all off. Time now to look forward to the activation day!

Wednesday, November 16, 2011

Put it Back On

  E has been such a good boy about keeping his bandage on. He even sleeps with it on just fine. If he is playing, it gets a little hot and itches. E knows he is not allowed to touch it, so he grabs my hand and places it where he wants me to scratch :-) We took it off to give him a little break and the incision must be healing and itching. He asked me to pick him up. I picked him up and he went for what I thought was a hug, but he instead tried to slyly use my shoulder to scratch. Resourceful little guy, huh?! 

  The surgeon asked that we try to keep the bandage on until Tuesday. This morning, we took it off since we figured he would welcome the freedom. The compression of the bandage must actually be comforting because E went and got the wrap and brought it to his Daddy to indicate that he wanted it put back on. We were shocked, but complied. Who am I to argue against a bit of added protection? We go for the post-op check tomorrow. Hopefully, the healing is going well and we will be on track for activation soon!

Monday, November 14, 2011

E's iPad

  A few weeks ago, I told you all that E was approved to receive an iPad to use during his therapy sessions. It came today!! We are excited to start loading it with apps that will assist in his listening therapy! It came at the perfect time. E has a new source of entertainment while he is inside recovering.


Daddy, Show Me How



Hmmmm....So I Slide This....



I Love It!!



Angry Birds

  Yes, it will be a therapy tool, but we haven't loaded it yet so Angry Birds was the only thing we had for him to play at the moment. It's educational, I swear :-) It teaches angle and velocity, right? Those long trips for CI mapping will hopefully seem a little shorter thanks to his new gadget. E is very quickly becoming a pro at all things iPad.



Saturday, November 12, 2011

Recovery Day 2

  Well, the bandage didn't last long. E pulled the bandage off today and we had to put on the plastic cover given to us by the hospital. I actually am kind of glad he pulled it off. I like this protector much better. It is not nearly as bulky and he seems much less annoyed by it. E was back to being himself today. With the new headband, we were able to put his right hearing aid on. He seemed very glad to have his hearing aid. Once we put the hearing aid on, he was back to babbling and laughing as usual. Today's challenge was to keep him from being TOO rambunctious.


A Bit of Light Yoga ;-)



Happy to Have the Hearing Aid

Friday, November 11, 2011

Surgery Day

  Well, it's finally done. On today, 11-11-11, my baby was implanted with his cochlear implant. The surgery went very well and we were on our way home around lunch. He is not a happy boy with his giant bandage and scratchy throat, but all is well. I have never seen my son so grumpy, but I would be grumpy too! He is doing pretty well with his pain meds, but has little interest in eating. Some of our friends are making bets on how long they think it will take before he has enough of the bandage and takes it off.


At the Hotel on Surgery Eve



X Marks the Ear



Playing with the Stethoscope



Recovery Time



At Home with Elmo and His Books :-)

  We have to try to keep the bandage on for a minimum of two days. This means we are probably going to have to hold him in the recliner and sleep because I guarantee that thing will be off in the corner of the crib if he gets a moment alone.  We go back to the surgeon Thursday for the post-op check. My sweet boy looks like a cross between Rambo and Princess Leia and is most frustrated with the bandage. His is hoarse and scratchy from the breathing tube during the surgery. We can't get his bandages wet for a while, so he's probably going to have some wild hair for a week or so. Overall, it seems to have gone well. I am told by other CI parents that he will likely be back to himself by tomorrow. Recovery is quick for energetic little ones. Here's hoping that 11-11-11 is a lucky day indeed! I know we will never forget it!

Monday, November 7, 2011

Update on Surgery

   Ok, so I've been tracking down the source of the mess up with our surgical date. I found out that the surgeon told his secretary five months ago that he would be out of town. That was even before we received the original date. The secretary failed to inform scheduling. While talking to the surgeon, one of the schedulers noticed a discrepancy in the schedule and changed the dates. The dates were changed on October 26th and someone failed to inform us. Basically, more than one boo boo was made when this thing started to roll down hill. After several phone calls and some negotiation, we are rescheduled for surgery this Friday. I have already warned them that we will probably be checking in daily to make sure everything is on track this time. To their credit, there has been a great deal of scrambling to get the issue resolved. Now, we get to hold our breath again...

The Sweetest Little Thing

  First off, I want to just say a big THANK YOU to everyone that has reached out to us this past weekend. The kind words, hugs, and encouragement have been like a healing salve on our hearts. You guys have really made me feel so loved and it is so wonderful to see how much my little boy is adored. It makes me laugh to think of how many of you were ready to go kick butt and take names for our sake :-) I have some tenacious friends! I like to keep up the appearance that I am well put together. For those of you this weekend that saw the cracks in the facade, thank you for allowing me to fall apart just a moment and thank you for helping me put it all back together.

  E has become really good at understanding what we tell him. Saturday, his papa fell asleep on the couch. I silently signed to E, "Look at Papa. Papa's asleep. Go get him!" E knew exactly what I said. He grinned and ran across the room to Papa, jumped up on the couch, and commenced to wallowing all over Papa to "wake him up." This morning, I heard my husband tell E, "go give Mommy a kiss." I look up and here comes E into my office all by himself. He takes his paci out, leans on the arm of my office chair and puckers up to give me a kiss. It is so cute that it makes me want to do some crazy happy dance. I love when he does things that we did not train him to do and wonder what other things he is picking up on his own. It's definitely time to start really watching what we say and do in front of him!

  Speaking of training, our "happy accidents" on the potty are increasing in frequency. I am still not sure he has made the connection between eliminating in the potty and the potty party that follows, but I think it will get there soon. I mentioned before that we have started just sitting E on the potty each night before his bath to just get him used to the idea so that he is not wary of the potty when it comes time to train. To our delight, E sometimes goes while he is sitting there. E had also started to pinch his nose to indicate that he was stinky after he had filled his diaper. Last night, he indicated a "stinky" before he did anything. Just as an experiment, I took him to the potty. E finished his stinky on the potty!!! I was so excited! E is now 17 months old and it looks like we might be making some excellent progress toward readiness for potty training. We did a little celebration dance and let him use the flush handle. His reward any time he goes in the potty is to get to use the flusher handle. He is not to touch it at any other time. I don't want things to start disappearing around here! Unless you are a parent, you are probably wondering why I am actually blogging about the potty habits of my kid, but anyone of you that has experienced this knows that this is a REALLY BIG DEAL :-) For the rest of you, hang in there with me...I will not always talk about life behind closed (bathroom) doors.

Saturday, November 5, 2011

The Ugly, The Bad, and The Good

  The Ugly:  I talked with the hospital again. I have made certain that we will not be billed for the hotel room we had booked. I got the "new" surgical date moved closer than the one we were given Thursday. We are still trying to track down just what happened and where the communication breakdown occurred. I will be contacted Monday after the surgeon gets back in office to see if we can get an even better date for the rescheduled surgery since this not the first time the date was moved. E's case is supposed to be "high priority" but has not been handled as such. There is some major booty kissing going on! Stay tuned for more on "As The Stomach Turns."

  The Bad: Shortly after learning I will be laid off at the end of the year, I discovered that there was an opening in town for a graphics instructor. We live in a town where there is very little need for graphic design skills (as in zip, zero, nada) so I was amazed to find something right up my alley right here in town! It seemed so perfect and the timing was just amazing. I felt like God might be opening a door for me. I put a ton of time into prepping my portfolio and making a branding package. I got called for the interview. It really seemed to be falling in place. The interview seemed to go well. A little tiny ember of hope started to glow. It got snuffed out today. I received a letter in the mail telling me I was not the chosen candidate. I guess it's very nice that they let you know even if you weren't chosen. I just couldn't help but wonder why that carrot had been dangled in my face though if it wasn't meant for me. I don't think it would have been such a big deal except that it really did seem to just be tailor-made and set in front of me at the perfect time. I am once again really confused as to what in the world is going on in our lives right now. It just really does seem like the old saying, "when it rains, it pours."

  The Good: The good of course is my E. He is my smile. He has suddenly discovered giving kisses. We have always showered him with kisses, but E has suddenly decided that he wants to give kisses and that he wants to give them on the lips. I don't know where it came from other than seeing his daddy and me kiss. It is the sweetest thing! While sitting with me in the floor coloring, he suddenly stopped and looked up at me with puckered lips. I gave him a kiss and he clapped and giggled. He finds a new way every day to melt my heart :-) 
 
  My husband's parents drove up and spent the day with us today. It was wonderful to be able to spend time with them. These are the good things in life.


E Snuggling with Papa


Thursday, November 3, 2011

Devastation

  We booked a hotel. We were supposed to drive down tonight and have E's surgery in the morning. We were supposed to receive a phone call telling us what time the surgery would be. We never got that call. We called them to try to get the information. We were told they moved the surgery date. Nobody ever informed us. No call. No letter. Nobody informed the audiologists. We are devastated. I can't even wrap my mind around this! The new date would mean that we would have to do the pre-op over again! Someone's head is going to roll. We both got off work. My parents got off work. We have waited and waited and waited. This is unacceptable. I am in the process right now of getting to the bottom of this and YES, I WILL GET TO THE BOTTOM OF THIS!

Tuesday, November 1, 2011

Hair

...and when we took off the Yoda hat, E's hair looked like this: