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!

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.

Visit to the Neurologist

I mentioned in my last post that Logan's ENT was a bit concerned with some of the MRI results.  His concern was mainly the presence of white calcium deposits on his brain. Although he wasn't too worried about it, he called a local pediatric neurologist and went ahead and referred us just to check it out.  Apparently, this is pretty common in CMV kids.

Those of you that really know me, know that I am a worrier.  So, of course, I go and google this and find all the worse case scenarios I can find. Andrew finally talked me out of "researching" this and just waiting to see the doctor.

So, naturally, I was quite excited to go talk to the neurologist today only to get there and be seen by the nurse practitioner because the doctor was out of town.  Luckily for us, the nurse practitioner was very good at what he does and went over everything with us and answered our questions well.  He even called us back after hours once he spoke to the doctor about Logan!

Basically everything looks fine because the spots were nonspecific and, although he is a little slow in his development, the important thing is that he is developing.  At this point, the only concern the white spots cause is an increased risk for seizures.  We will hear from the doctor personally next week and go back in 4 months to make sure Logan is still developing appropriately.

Our Story

This blog is long overdue!  Logan is now 9 months old and I've been meaning to start this to document his story and to share with others for so long. Since he was diagnosed, I've taken much comfort in reading the stories of other families and I hope our story can give comfort to others.

We have 1 daughter and were very happy to be adding a son to our family. I can remember how in his first month of life it was both one of the happiest times and one of the hardest and saddest times in my life.  He failed his newborn hearing screening 3 times before we were discharged from the hospital.  They assured us that we did not need to worry and that this happens quite often.  We were sure he just had some fluid in his ears.

When he was 1 week old, we went to get an ABR test done, which he failed. The audiologist suggested we do a repeat ABR when he was a month old, just in case there was still fluid in his ears.  As we waited those 3 weeks we did many "hearing tests" on him, such as banging pots together, having his sister yell and anything else we could think of.  Every time we thought he had a response, we were so hopeful.  The 3 weeks finally passed and there I was with him and the audiologist again.  As I knew deep down, they confirmed his hearing loss that day.  I was crushed when they told me that he had severe to profound hearing loss in both ears.

Logan was fitted with his first set of hearing aids when he was just 7 weeks old.  I will never forget how his face lit up when he actually heard us.  But with that joy I also felt so sad thinking about all the things he had been missing.

Logan has come a long way since then.  He has so much help that I am so thankful for. He is enrolled in an early childhood program at a great oral deaf school here and has other early childhood intervention services.  He is such a happy baby and he loves to babble, which melts my heart knowing his degree of hearing loss.