Four Weeks Post Activation

It has been almost a whole month since Logan's CIs were turned on.  My how time flies! We have certainly been busy with all the extra therapy sessions that have been added in the past month.  We have teachers from both Easter Seals and our school district that we now see once a week each (previously twice a month), our advisor from Sunshine Cottage whom we also see weekly and Logan's physical therapist, which has been bumped to a weekly occurrence as well.  In the next month or so, we'll also be adding Speech Therapy to the mix!

I am very happy to say that I am pleased with the progress he has made in the last month.  As you may or may not know, cochlear implants provide a whole new way of hearing so the recipient must learn how to interpret the information from the digital signal his brain is receiving from them.  Because of this, we were told to consider his hearing like he is a newborn and to expect his vocalizing and speech to roughly follow the timeline of a child in his first year of life.  Of course, this is only a generalization and some children progress much faster than this and other progress slower.

Well, during the first couple of weeks with his new ears Logan was pretty quiet, as expected, since he was learning to listen with his new ears.  But over the last week he has started babbling again! I am thrilled because this started before his ears were even a month old.  He is saying ma-ma-ma-ma and ah ah ah ah.  When I first told one of his teachers she was very excited because she said it usually takes a lot longer for CI kids to start babbling again.

Last Wednesday, his implants were remapped because his swelling has gone down a lot over the last month and they were able to make them louder for him.  Since then, I've also noticed that he is starting to turn more and more toward sounds.  I've even caught him dancing to music, something he had never done before.  We can't wait to see what the next month will bring!

Two Weeks Post Activation

It has already been two weeks since Logan's initial stimulation and we are thrilled with what we are seeing so far. It is by no means a night and day difference from the hearing aids he wore previously.  He is still getting used to his new ears and starting to figure out how to listen with them, but when he responds (or appears to respond) to things we had not previously seen, it brings so much joy to my heart.

For those of you who are not familiar with the Ling 6 sounds, these are familiar sounds that broadly represent the speech spectrum and include low, medium and high frequency sounds (ah / ee / oo /mm / sss / sh) and can be used to test whether a child has access to the full spectrum of speech sounds in a very low tech way.  With hearing aids, Logan had very limited access to these sounds. We are still unsure of what he has access to with his implants, since we will still be fine tuning his programs and we have not had a hearing test with them yet.  However, I was thrilled when Logan responded to the "sh" sound when I was working with him the other day.  He has never been able to do that, as far as I can remember.

The other thing that we have been so excited about over the last few days is that he is starting to respond to music!  We love listening to music and we are so happy that hopefully our son is now able to hear some of it.

Jasmine was watching Madagascar yesterday and the part with the Bee Gee's song came on. Logan was not looking at the TV at the time, but he started bobbing up and down as he was cruising the sofa. He had no visual cues that would tell him to start dancing so I know he heard the music!  We are so excited to see what other great things he will be doing in the near future.

                                          Logan Dancing

Activation Day!!!!

The day we've been waiting for has finally arrived! It's one week after surgery and today Logan's ears were turned on! It is the first day of his new hearing journey, and one that we are thrilled to be undertaking with him.  We were very anxious to see what his response would be when they turned the first one on and were well aware that some kids have no reaction, some smile or get excited and some cry because it is so new to them.  Of course, every parent who goes through this hopes for the big, excited response, but that is the exception rather than the rule when kids are activated.

The moment finally arrived once Marci, his wonderful audiologist, did her thing to get the first side ready to be turned on. When she turned on the first side poor little Logan was scared and cried.  As she went through the mapping of this first side, he got used to the sounds and started to respond much better. 

                                          Logan's First Response

                                          Logan gets accustomed to the sounds

It was a really long morning for Logan. He started acting really tired and getting fussy when we were still working on the first side. We even contemplated activating only one today and resuming tomorrow. But Andrew and I really wanted to get it all done, so we resorted to all the snacks and goodies I packed for him. Thank goodness for Veggie sticks, Mum-mums and puffs! 

By the time we got to doing the second side, he was already a pro at it!  He didn't cry this time. He would just look up at Marci, a veggie stick in hand, and would raise his eyebrows every time he heard something. For those of you that work with Logan regularly, you know this is his signature response! He had gotten his energy back up by the time the mapping was done.  By this time, he was back to flirting with his wonderful teacher Lindsey! 

                                          Logan's eyebrow raising
 

                                          Logan does the unexpected!

We were lucky enough to get to talk to an audiologist from Cochlear who happened to be on site at Sunshine Cottage today.  We were very interested to talk to her about how "waterproof" his new implants were.  She was very helpful and answered all of our questions.  She even encouraged us to experiment now while the devices are under warranty!

Once we left and picked Jasmine up from my mom, we went home for the kids' naps. Well Andrew and I realized how exhausting the morning had been and we napped also.  After our naps, we decided it was time to celebrate Logan's big day. And what better way to celebrate than to go out for some good ice cream! 

Having been through our first day with Logan's implants, I realize just how hard it is going to be just to keep them on his head.  The hearing aids were hard enough, and he certainly mastered the art of pulling them out of his ears. But since he is so small and the processors don't stay on his ears very well yet, the device is mostly just dangling from the magnet on his head with the wires so much easier for him to grab onto.  I'm sure we'll come up with a way to keep them on him, just like we did with the hearing aids. I'm not really anxious to have to put some type of headband on his head! Either way, I'm so excited to see what the future holds for him!

One Day Post Surgery

Logan woke up feeling much better today.  It was pretty entertaining to watch him crawl around with that big bandage on his head.  He was a little unstable because he was so top heavy and I felt like I had to follow him closely to make sure he didn't lose his balance and fall on his head.

Were were instructed to remove the bandages 24 hours after the surgery, so we took them off mid afternoon.  I was hesitant to do it, so Andrew volunteered to do it.  I was so happy for that.  I was really nervous to see what his ears and the incision spot would look like when we took it off.

We can tell that his ears and face are swollen and I am hoping that it goes down quickly.  He was happy to have the bandages and the arm braces off, but we eventually had to put the braces back on because he kept trying to pull on his ears.

Later in the day, his big sister Jasmine got home from her Aunt and Uncle's house and we were all very happy to see her. We hadn't seen her since Tuesday evening, which is the longest we've been without her.  I'm so glad our family is back together again.

Logan's Big Day Today

The day we have been waiting on for months has finally arrived.  Yesterday, I got a call from the pre-op nurse asking a million questions about Logan's medical history.  This is when it really sank in that his surgery was actually happening. Originally, we were told that we should arrive at 6 a.m. for an 8 a.m. surgery, but Dr. Perry's office called at 4:55 in the afternoon to tell me that we needed to be there at 5:30 for a 7:30 a.m. surgery.  I know it is only a half our difference, but man do you feel it when you get up in the morning.

We were up at 4:15 a.m. and left the house at 5:10 a.m.  I got Logan up 10 minutes before we left hoping he would go back to sleep, but of course, he was wide awake. We got to the hospital right on time and waited for them to take us up to prep him for surgery.

We got upstairs and he was squirming and trying to get out of my arms. He wanted to go and explore so badly! We changed him into his hospital gown and waited to talk to his doctor and the anaesthesiologist.

When it was time for surgery, Andrew carried him to the doors of the operating room, where we gave him hugs and kisses and took out his hearing aids for the last time.  His Grandma and Aunt Jenny got to see him before he went in also.

We were asked to stay in the waiting room because they would call to give periodic updates.  The first call was at 8 a.m. to tell us that they were starting the first side. The nurse called again around 9:30 to let us know that they had successfully completed the first ear and were about to begin the second ear.  Around 11:30, we saw Dr. Perry come out of the operating room carrying all of Logan's equipment that we would be taking home.  I was so glad to see Dr. Perry and to know that everything went well.

They called Andrew and I back to the recovery room around noon. Poor Logan was just miserable. He was trying to cry but it seemed like he was just too tired and uncomfortable to make a big effort, so he mostly just whined.  He was also mad because they put restraints on his arms so he couldn't bend them and pull on his dressings. He has to keep the restraints on until tomorrow when the bandages come off.  Poor little guy!

They gave him some glucose water, which he finished very quickly. So they gave him a second serving. They also decided to give him some more pain medication, which I was very happy about.

We only had to stay for about an hour and a half after the surgery was completed.  We were all very happy to get him dressed so we could leave.

We have been home for about 4 hours now and Logan has been sleeping most of the day. He had another dose of pain medication and has started back on his milk.  So far, he hasn't been interested in any solids.  I can't wait until he is back to his normal, funny self.

Counting Down!

There are a number of reasons that I am counting down the five days until Logan's surgery.  I am anxious to get this procedure over with and stop worrying about it. And of course, I can't wait to start this new chapter in his life.

However, another unexpected reason I am counting down is that I just can't wait to be done with these hearing aids! Yes, I know the cochlear implants will be a whole new set of headaches, but I am so done losing pieces of these hearing aids.

I hosted an in house playdate for the toddler playgroup I am a member of this morning. We had 11 toddlers, 3 infants, and of course, their moms here this morning.  It was a blast as usual.  But once everyone was gone for about 20 minutes, I noticed that Logan's processor from his left hearing aid was missing. The earhook and earmold were still there, so the processor managed to get unscrewed from the rest of it. I had to tear up the playroom again looking for it, but came up empty. I checked downstairs, in his hamper, and upstairs again and couldn't find it.

During all this, I was battling with Jasmine to stay in her room and take her nap. When I finally got her to stay in her room, I went back downstairs and started crawling on the floor everywhere Logan had been.  Unbelievably, I found it in the middle of the living room floor.  I was so relieved! The whole time I was looking for it I kept thinking I can't believe we made it this far without having to pay the deductible for a lost hearing aid and here we are, less than a week before surgery, and we've finally lost one.

I am so glad I found it and I am so ready to turn them back in to Sunshine Cottage.

First Meetup Today!

Through the last year I have found that talking with families with a hearing impaired child has helped me out tremendously.  Not only does it help you feel less isolated, but it gives you the ability to share your war stories, so to speak. It's the same as a new mom who wants to talk about diapers, napping, their baby's latest accomplishments or even frustrations and questions. You get support and you give support.  Speaking of this, I am a member of a toddler meetup group for my daughter and have made some great friends for myself and for my daughter because of it. I have also gotten lots of support from them as well. I am so glad that I took that step to join the group. 

Because of this experience, last month I decided to start my own meetup group for infants and toddlers with hearing loss. I recall when Logan was first diagnosed, one of the first things I did (after calling a dear friend who has a daughter with hearing loss) was to look for a support group.  Unfortunately, there was nothing here.  I had entertained the idea of starting something then, but I just wasn't ready. The wound was still too new.  So it slipped to the back of my mind, and life went on.

To make a long story short, I hosted my first meetup for my new group today at a local park. It was small, as we do not have very many members yet, but it was quite a success!  One of the moms that I know from Sunshine Cottage was there and we also had a father join just the other day who was there with his son, daughter and wife!  What made this so great was that they just found out within the last week that their 2 year old son has hearing loss.  It makes me very happy that I created a group that has already served to support a family who is going through that very difficult period of shock, sadness, anger, isolation and just about every other emotion you can think of.

I hope that I can reach more people with my group and that it serves its purpose to provide support, encouragement, and a sense of family for others who are going through this as well.