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.

Logan is 1!

With the end of Logan's first birthday here, I have been thinking about this last year quite a bit. I remember the anticipation I felt as I waited out those last few weeks of pregnancy. I remember my contractions getting regular late in the evening and finally calling my mom to come stay with Jasmine. I remember the joy we felt when we first saw him and held him. I remember the worry we felt when he failed his newborn hearing screening.

Waiting those weeks for the next hearing test was torture. And when the audiologist confirmed that he had significant hearing loss, I remember my world crashing down. I wondered if I would ever hear him speak and what life would be like for him. I am so happy to say that today, as a one year old, he says mama, dada and hi consistently, and it is music to my ears!

I also remember the day when we went in to get his first set of hearing aids. I can still see the smile on his face when he actually heard us talk to him for the first time! And now that he has tried out the hearing aids, gotten more powerful hearing aids to try, and is scheduled to get his cochlear implants in less than a month, I am so excited to see his reaction when they get turned on.

I remember meeting his teachers (from Sunshine Cottage and the Early Intervention program) and his audiologist and feeling apprehensive and nervous about the process we were going to be going through. But now these women are like our extended family and we love them so much! I can't express how much they have helped, not only Logan, but me as well.

When I took him to his 6 month checkup, I shared my concern with his pediatrician about his upper body strength. He just seemed too wobbly for his age. She agreed and referred him for a physical therapy evaluation. It took a lot of work to get him to sit up unassisted and I don't think he actually did it consistently until he was 9 months old. But since he reached that milestone he has been progressing at warp speed! In these 3 months, he started rolling to get everywhere, started doing a commando crawl, transitioned to a traditional crawl and then a bear crawl, and has been pulling up and cruising on anything and everything he can get his hands on! He will be walking before we know it.

This next year is going to be great for him and our family!

Surgery is Scheduled!

Originally, we were going to do one implant when Logan turns 1 and the second implant about 6 months later. However, when we went to see his ENT recently, he said that Logan's hearing test results were so much on the fence that you could make an argument to do one at a time or to do them both together. We told him that our preference would be to do them both at once and only have to go through the surgery once. So he said he would talk to Logan's audiologist, and if she was on board, we would do them both when he turns 1.

Well, we heard from the doctor's office last week to schedule his surgery and they scheduled bilateral implants (both ears)! The downside is that since the surgery is twice as long we could not get it scheduled right after his birthday at the beginning of July like we had hoped. So now he is scheduled to go in for his implants on July 25^th. Here's hoping there is a cancellation so we can get in before then!

We are so excited to get his new “ears” and to begin his therapy for this. I know his wonderful teachers are excited to see how he does as well.

For those of you that don't know, this is what he will be wearing:

Making Progress

For those of you that don't know, Logan has been in physical therapy 3 times a month for the last 4 months or so. At his 6 month checkup, I mentioned to his pediatrician that he was still a little wobbly and seemed to be weaker in his upper body in comparison to his lower body. She checked him out and decided to refer him for physical therapy. Developmental delays are common in children with CMV.

When we had our physical therapy evaluation the therapist said he was about 2 months behind which she said is not too bad. For the past 4 months we have been working hard on helping him with his head control, sitting, rolling properly (some of you have seen his acrobatic style rolls), crawling and standing (in addition to learning to listen).

At times I have been discouraged because he seems to be taking so long to reach certain milestones. I realize this is because I am comparing him to Jasmine and how quickly she achieved them. I try to stop myself when I catch myself comparing them, but it is easy to slip back into it.

I have to say that the therapy has really started to pay off over the last month and a half. In this short time he has perfected his sitting, rolling, commando crawling (although he did actually crawl with his belly off the floor today!) and is pulling up on anything and everything he can possibly find. He actually prefers to be standing now and has let go of whatever he is holding thinking he can balance already! I am so proud of him and am so happy to see him finally start taking off and catching up to babies his age. Thanks Denyse, we couldn't have done it without you.

Sound Decision

We met with Logan's audiologist today to go over the pros and cons of the different implant brands. We had already ruled out one brand, so we had the Med-El and Cochlear Americas to look at. There is really so much to think about since this is something that will be inside his head and it's not like you can just switch it out on a whim.

Originally, we were pretty sure we were going with Med-El since Logan's ENT had suggested it because the internal device has the thinnest profile and the outer device is backwards compatible. We got to look at a sample device and it was very basic. It didn't really have much polish to it. Both brands come with a remote to control various options on the device but theirs was also quite basic and looked more difficult to use.

Once we reviewed the Cochlear Americas device we were sold! This device does everything the Med-El does but it seems like it does it better. Their devices are also backwards compatible, their remote has a screen and some great troubleshooting features, has a sleeker design and has splash protection. Our audiologist shared a story with us about the Cochlear Americas representative who visited the school and talked about how parents tend to be apprehensive about the splash protection, and understandably so! I mean these devices aren't cheap! So to demonstrate, she actually had the device submerged in a fishbowl full of water for over 3 hours and it still worked! This is a big deal to us because both our kids love the water and it is always a shame that we have to take his hearing aids off for him to be in water. The other thing we loved about Cochlear Americas is that they seem to have a lot of integrity as a company. Our audiologist told us that they voluntarily took their latest internal processor off the market and reverted back to their older processor because they saw a trend of processor failure after a few months of use. So instead of waiting for the FDA to force them to take it off the market, they took it off themselves. Advanced Bionics, a company we were not considering, actually has been forced to take their stuff off the market a few times.

We also got to talk to a child that had a Med-El implant and one that had Cochlear Americas. They both spoke very well and it was nice to see how much these implants can help these kids. I can't wait to see how it helps little Logan!

Reflections

I'm here trying to sleep and I keep thinking about another blog I read earlier today about a baby that died due to SIDS.  That has always terrified me. It got me to thinking about Logan and how I am so happy that he is my son, even with all the challenges he will face in his lifetime.

Thinking of this reminded me of our grocery shopping outing earlier this week. I usually go by myself but this time Andrew and the kids came along. Afterwards, we decided it was really a bad idea because the grocery store was packed.

We decided to divide and conquer. Andrew took Jasmine in a shopping cart and I had Logan in another.  While I was trying to find a certain breakfast cereal, I noticed a family of four, though the two kids were much older than mine. Their boy, who was probably 7 or 8, was staring at Logan. Then he started pointed at him and saying "mom, look at that baby with those things on his ears." I heard the mom reply that it was to help him hear.  That was all fine with me, but then the boy kept pointing and staring and practically shouting about Logan to his parents. 

This really infuriated me, especially because his parents didn't correct his behavior and just let him keep being rude!  I really wanted to tell that boy something, or his parents for that matter, but I was so angry about it that I didn't have anything remotely polite to say.  That was this past Sunday and it still gets to me when I think about it.

I know I will need to get used to this since the staring and comments will be more frequent once Logan gets his implants and has the processor stuck on his head. I just need to think about how I want to handle these situations now before I run into them again.