Lucas and his fancy Hearing Aids!

Friday, December 31, 2010

Happy New Year!

I hope everyone has had a good year, and if not, I hope 2011 treats you well! 2010 was a great year for us, some things didn't happen quite as expected, but that doesn't make it any less amazing.

First, today is my four year wedding anniversary with my amazing husband Norman. We've been together 9 years in March, and I couldn't be happier than to be married to my best friend. Things aren't always roses and sunshine, but we always make it through together. I have been so impressed with how he has handled Lucas' hearing loss, and done everything that has needed to be done for him with love and compassion. I've been pregnant every other anniversary so far...this year is an unpregnant year, I'm thinking next year should be a pregnant one! ;)

Last year at this time found me about 4 months pregnant. We found out in early December we were having another little boy, a brother for Noah. I had a very large subchorionic bleed at 7 weeks with Lucas, and it was touch and go whether or not I would end up having a miscarriage. That 19 week scan showed the bleed was almost gone, which was the biggest relief to me. It also showed a perfectly normal, healthy baby boy. There was no way to know at that point about his hearing loss, and I'm glad for it. Having one thing to worry about was enough.

March 5th 2010 was Noah's 2nd birthday! He has grown in leaps and bounds this past year. He'll be three in just three months. The official big boy birthday. He is the smartest little man, has a sense of humor way beyond his years, is talking more and more and has an imagination that blows my mind. He has energy that I don't know what to do with (and I wish I could bottle it and keep some for myself!) and has a very strong personality, which can often lead to tantrums. He's rarely mean though, and has a very very sweet sensitive side. He is a FABULOUS older brother to Lucas. Better than I could ever have imagined, and I love seeing the bond between them grow.

April 24th, 2010 our sweet baby boy, that we weren't sure we were going to get to meet, was born. He was born the last day Norman had a show before his due date, exactly one week early, and so Daddy missed it. Here was there in spirit, and thru skype and watched it live. I was in room 13, it wasn't an unlucky room, but it sure was a room with a lot of stories by the time we checked out. We were the room that had Daddy watching thru skype, had the baby that was nearly born on the toilet, and then the room that had the baby that failed the newborn screening.

I won't lie and say that the last part wasn't tough to take. It was. Especially since I had a feeling once I got that news that it wasn't just fluid trapped from birth, despite how quickly he was born. I knew in my gut (and also by the lack of his responses to many sounds, and that all famous baby startle) that he had a hearing loss. Despite the news that sent my world spinning a bit, April 24th was one of the best days of my life. I would not trade the little person that was born on that day for ANYTHING in this entire world. He has enriched my life so much, and this family would not be complete without him in it.

There have been hard things this year. Things like wrapping my brain around what it will mean to have a child with hearing loss. Being told he was profoundly, completely deaf- and fighting to get the right answers since I knew that was wrong. Having lots of appointments, therapies, miles and miles and miles and hours driven in my car. Figuring out babysitters. Feeling like I'm not doing a good enough job at being Mommy to both kids. But despite all that, those are just minor bumps in the road. Things I try not to dwell on too much, but because the good far outweighs the bad.

We have had some amazing experiences because of Lucas' hearing loss. I have met incredible people because of him. They say it takes a village to raise a child. With a child that has special needs, it takes a village, supportive loving family and friends, and a team of caring professionals to help that child grow. How lucky are we to have that in our lives. I have also met other families that have children with hearing loss. They have inspired me so much, with their strength, dedication to their kids, and their positive attitudes. Seeing their amazing children gives me so much hope and encouragement for Lucas. I value the relationships I have been able to build because of Lucas.

We are part of a very tight knit, wonderful community now. Noah and Lucas will grow up being part of both the hearing and the Deaf community. They will have experiences that will enrich their lives, and meet remarkable people. They will grow up with more empathy towards those that are "different" than the rest of us. As a family we will be surrounded by people and families that know what we are going through, will care and lend a supporting shoulder, and down the line, I will do the same for a new family going through the same thing. I wouldn't have wished for Lucas to be deaf, but if I had to choose, I would have chosen this path. It may have it's dark spots, but there is a whole lot of light.

To close out 2010, we bought our first house. A lovely ranch for plenty of room for us to grow and for the boys to play. We will have the horses here hopefully next year, and a pony is on the list for the kids! :D I wish life would slow down a bit (My big boy is almost 3 and my BABY is 8 months old!!), but I'm so excited to see them grow up here, and the memories we will create.

Happy New Years to you and yours! I hope 2011 is a wonderful year for you all, filled with love, laughter and health. Thank you all so very much for all the love and support you have given us this past year. We appreciate it more than words can say!

Sunday, December 5, 2010

Little Mister

Here's a general Lucas update since the last ones have all been about appointments!

He's seven months old now (WHAT?! Where'd my baby go?) and the happiest, most gorgeous little person! He is always so laid back, is always super smiley, and he loooooves his Mama (and boy is the feeling mutual!). He also loves his Daddy and big brother Noah. He's a lot like Noah was at this age. He hasn't been a great sleeper, which is pay back for Noah I suppose, seeing as he STILL sleeps 12-14 hours at night and takes 2-4 hour naps. He's starting to sleep a little bit longer at a time and nap more which I'm thankful for, but I can't get too sad about having to wake up and see his gorgeous little face a few times a night!

He just started crawling last night. He's been up on his hands and knees rocking, and was really good at rotating around for a while. All of a sudden he decided he was ready to crawl, and started cruising all over the place! I think I'm in trouble!

He's doing REALLY well in speech therapy. Our speech therapist Cathy is really great, and so helpful. We have a bunch of songs and games we sing and play that are designed to help him recognize the speech sounds. He's been detecting sounds a lot lately, turning his head to look for them, smiling when he hears them.

We've also been having sign language classes at my house every monday, which has been a lot of fun. Our instructor Joanne is an interpreter and she's a lot fun. My Mom, Dad, Sisters and Josh all come most Monday's so it's a family affair. It's great to have the people he sees most in his life so involved in learning how to communicate with him, it means a lot to me. Afterwards we usually have pizza or something. It's given us a reason to get together at least once a week, since our schedules can be so busy. I look forward to Mondays :)

There's more, but three posts in one day is my limit! It's 11pm and he will most likely be awake in the next couple hours, so it's bedtime for me! Hopefully I will be a little more on top of posting regularly, but I can't promise it! :D

Booth Testing

Lucas had his first behavioural testing in the sound booth done last week. I very interested to see how it would go. Cindy (his audiologist) explained it to me, and it kind of sounded like a lot to expect from a little baby, but I trust her expertise.

I went in the booth with Lucas, and another Audiologist (Nancy, I think) came in with us. Her job was to play with Lucas, watch for reactions, and point out the little bear that would light up and play drums in the corner after a sound was presented. The goal was for him to correlate to sound to the bear moving. They put little microphones in each ear to send sound into, and Cindy sat outside the booth both talking into the microphones and sending tones into them. I thought we were going to test him with his hearing aids on, but for this test we just tested his natural hearing.

The first few times he heard a sound the audiologist pointed out the bear and made a big deal about it. The third or fourth time he heard a sound he whipped his little head right around to look at the bear before it even lit up. I got a little teary at that first reaction. Deafness sometimes has other syndromes and disabilities associated with it, including cognitive delays, so to see him catch on SO quickly made me feel so good. Of course it also meant he heard the sound she was sending in!

We were in the booth for at least half an hour. He did SO well. He was happy and playing, and responding the whole time. Towards the very end he started losing interest and getting hungry, but still no fussing. We decided to end it there. Cindy was really pleased with how well he did. She said they way he reacted to the sound was great- it meant he's understanding that sound has meaning, and also is learning how to localize to where it's coming from (she tested the right ear too, and he turned in the correct direction!). He also tested right about where his ABR said he should be testing! It was yet another learning experience for me! From now on we'll be having those periodically.

After the booth test we took impressions for new molds since his current ones are starting to get a lot of feedback. I got him red and green swirled molds for the holidays! I couldn't resist!! :D He gets them next week!

Sedated ABR in Boston

I've been thinking, and have had a few people mention ;), that I've been very slack on keeping this blog updated! I'll probably slack off again, but for now, I'll update you as much as I can!

Lucas had his sedated ABR (Auditory Brainstem Response hearing test) at Boston Children's hospital on October 27th. I was looking forward to it so much- it was the appointment that was going to give us the answers to his hearing loss. My Dad drove down with me to the appointment since Norman had a show, which I very much appreciated. I hate driving in Boston traffic, and I would have been worrying about Lucas the whole drive home if I was by myself.

We met with Dr. Kenna (pronouced Ken-ay) and went over my pregnancy, his birth, our family history, the testing that had been done up until that point and what we felt we were seeing. I told her that it seems like he responds to louder sounds sometimes, especially when sleeping. She checked him over and made sure he was healthy (he had started coughing slightly that morning, and I was SO worried we were going to have to cancel), and gave him the ok. He was of course, all smiles and flirting with the nurses and being his normal charming little self.

We got sent back to the SOUND PROOF (instead of a back closet) room for the ABR. They gave Lucas an oral sedation, which he drank right down, and he passed out pretty quickly. They got him all hooked up to a heart and O2 monitor to make sure he was tolerating the sedation well. Then they hooked him up to all the ABR wires.

Our audiologist, Gerri, was very nice and very thorough. She took her time and explained things to us as she went along. She tested both ears for about an hour. We got the results right there. His right ear had a response at 90 db for clicks, with no response to tones at 95- so that ear has a profound loss. His left ear however had a response to clicks at 70 db, and to tones at 75db, all across the frequencies. She tested that ear up to about 95 db and it was consistant. That means his left ear has a severe loss (at the beginning of the severe range). That means all those loud sounds that he seemed to respond to were actual responses. It made sense that they weren't consistant, because the small amount of natural "hearing" that he has, is only in one ear. It felt really good to know that I wasn't just imagining things. There is something to be said for Mommy's intuition!!

We talked to Dr. Kenna after the ABR to go over the results. Our course of action is to continue with the hearing aids, speech therapy and sign language, and see how he's doing with it all in Feb. He may do just fine with hearing aids, or he may need an implant in the right ear. It's pretty much a wait and see game right now.

We got his hearing aids adjusted to his audiogram the next week and it made a HUGE difference in his reactions to sound. He immediately started turning more to sounds, and making a wider range of vocalizations. All very encouraging.

I wish we had gone down to Boston a lot sooner, but I can't change the past. I'm just so happy that we FINALLY have more answers to what's going on with his hearing.

And now a bonus- picture's from Boston!!


Grampie and Lucas checking out the busy street below.



Mommy and her little man. I was SO excited for this appointment!


Sedated- all hooked up to the wires.


The microphones they put in each ear.


Waking up- always such a happy little boy!

Wednesday, September 22, 2010

Noah Signing!

I'll post a blog soon about how things are going with the hearing aids soon, but havn't had time to sit down and do it yet!


I just had to share this video I took of Noah showing me some of the signs he's learned so far! I am so impressed with how quickly he has picked it all up, and most of all, how much he seems to enjoy it! We've been watching the signing times DVDS, and though I do sign with him, a lot of these he has been(and me too!) picking up from the DVDs. He knows that we are learning to sign so we can talk to Lucas, and will talk about that to people. He is even starting to use the signs if I am talking about something and he knows the sign for it- unprompted! I am just so amazed at him, they are such little sponges at this age, but I didn't know if it would be something that interested him, so I'm thrilled that it is!

http://www.youtube.com/watch?v=WeK6LEG6R_o

Friday, September 10, 2010

Hearing Aids!!

I'm a very bad blogger!! Life has been so busy lately, I just havn't had time to sit down and update this!! Here's a GREAT update for you all!!

I think I left off telling you all that we are done with the old ENT office Head and Neck Surgical. I am SO SO glad that we made that decision. I am thrilled that we are back at Northeast Hearing and Speech, and we LOVE our Audiologist Cindy! I feel like she actually listens to me and doesn't discount what I tell her, and doesn't make me feel like I'm just some desperate mother trying to convince herself she's seeing reactions. Our first audiologist was very nice, but I never felt like she took me seriously.

When I first went back to Cindy, she was telling me that she was surprised at the lack of hearing Lucas' ABR showed, based on the behavioural responses we saw at the follow up testing when he was two weeks old. At that time she was of the opinion that he had at least some hearing. I agreed with that based off all the reactions we have continued to see, but the tests said that he wasn't hearing anything. Lately he has actually startled when Noah shrieks, he wakes up when our alarms go off, he wakes up sometimes if we start being loud around him. I have a huge list of times he's woken up, or at least stirred in reaction to the sound, and there hasn't been anything else going on, like Noah jumping nearby or us touching him. I *finally* got good video of him the other day of us waking him up from a very sound sleep just by being loud.

Because of all of these reactions, and the video, Cindy decided to set his hearing aids conservatively. She doesn't want to do damage to any of his hearing if it turns out he has a milder loss. That is FINE with me! I would much rather be safe then sorry. We can always bump it up if he needs more. I would hate to discover that he didn't really have a profound loss, but he does now because we had his hearing aids set too high!

He finally got his hearing aids yesterday, 9/9/10! They are so teeny tiny and so cute! I got him a blue mold and a green mold, to make it fun! I want this to be something he can be proud of! We went over all the different parts, and the care for them. It's pretty straight forward, the hardest part is putting them in. It's not really that difficult, but right now I can't do it very well unless he's sitting in a bebepod seat. I'm sure within a short period of time I'll be able to put these things on upside down with my eyes closed! He is SUCH a good baby, and doesn't fuss at all while we are messing with his ears and putting them in. I am so lucky with him! I'm having a little bit of trouble with feedback and whistling, but I think it may partly be user error. Like I said, I'm not great at putting them in yet, so hopefully in the next couple of days I'll be able to get the fit better. Either that or we may need to get new molds made. He is a very fast growing little guy, and his molds were made a few weeks ago! I'll call monday if I'm still having problems.

It has been SO awesome to see him responding to sound! I can't even explain it! I have been on cloud nine, and just giddy with happiness for him!! When we first put them in he was looking around a lot more. Usually he finds something to look at that interests him and will stare at it for a while, but he has been really checking things out when people are talking. After we put them on in the office yesterday Cindy was holding him and he was looking down chewing on his hands. I said "Hi Lucas" and he looked right up at me and smiled! Man, what a feeling!! When I got home he was passed out in the car, the kind of sleep where their mouths are hanging open and they are just OUT. I started talking to him in a normal voice and his little eyes opened right up, and you could see in them that he was wondering what *was* that that had just woken him up! Of course I was so excited I forgot to take video of that! We're not going to see him turn to sound right off the bat most of the time. He's pretty much a newborn in terms of hearing right now, and it takes a few months for babies to start to turn to sound and their names. Right now we are looking for signs that he notices sounds, like widening of the eyes, stopping sucking or whatever he's doing when he hears a sound, startling etc. It's so obvious to me that he IS hearing things with his hearing aids on. It doesn't mean that he wont still need an implant. It all depends on how *much* he's able to hear, and if he's able to hear the speech sounds. If he can't hear the speech sounds, he wont learn to speak and listen properly. However, getting access to sound is SO important because it keeps the auditory centers in his brain stimulated, and will make it that much easier on him if he *does* need an implant.

I got a little bit of video tonight of him waking up in his car seat when I'm talking to him. I started to watch the video on my phone and that woke him up completely and boy was he upset with me! Wish I had gotten that on camera too! Hopefully I'll have lots more video of him hearing to post soon, and I wont have to be waking him up every time to get it! :D I'll have videos posted on facebook, so if you're not already my friend add me: Tonya Ng

I want to thank EVERYONE that has been so supportive, and have had such kind words for us. We are not alone in this journey with all of you behind us. Lucas is a very very lucky child to have so many people that love him and are cheering for him. You all have helped be our strength when things were/are going rough, and have been our cheerleaders when things are going well. I can't thank you enough for that.

Saturday, August 14, 2010

Goodbye Head and Neck Surgical!

This post would have come sooner, but I was busy lying to my sister about some "appointments" we had so that she would "babysit". I then called her and told her those "appointments" were cancelled, and she went with her boyfriend to a "video shoot" and got proposed to! :D Congrats Crystal and Josh! Needless to say, I couldn't post what was really going until after that happened in case she read it, had to keep my cover going!

So anyway. Our last ABR with Lucas was on June 28th. At that time we were told they would be contacting Mass Eye and Ear and we would go from there. I got a call a few days later saying that the doctor down there was out until July 12th, but once they heard from her, they'd give me a call and let me know the next step. I got a call around the 15th saying the doctor down there wanted us to do the CT scan and genetic testing up here first, and that the ENT's medical assistant would be giving me a call to schedule it. I waited until the last week of July, and still no call. Norman was going on the road soon and I called and left a message with the medical assistant telling her that (as he needs to be present in order for his blood to be drawn!) and asked her to call me back so we could schedule an appointment. That was on Monday July 26th. Friday the 30th came along and I hadn't heard anything. I was getting annoyed by this point, it had been over a month since his last appointment, and nothing else had been done.

I decided to call and leave a message for the audiologist instead, as she was the one that had called me in the first place. I explained the situation, and asked her to give me a call back. She called me back on Monday and said that they were waiting on the CT scan because he needed to be sedated. OK. Then she said she was waiting for insurance to approve the genetic testing because it is $700. I asked if they had sent for approval yet, and she said they had. Then I asked when we were going to go down to Mass Eye and Ear, and she said we didn't need to go down for at least three months. I asked what we were doing about hearing aids and she said she didn't think he needed them. She said she would ask Mass Eye and Ear if they wanted to do a trial and let me know. I was upset by her answer because it's important that he get hearing aids for many reasons. We need to see if they will help, they keep the auditory nerve stimulated, they get him used to wearing something on his ears, and most importantly, most insurance agencies REQUIRE a 6 month hearing aid trial before allowing a cochlear Implant.

Since I was unhappy with the lack of communication with the office, and the information I got from the audiologist I called my Pedi Dr. Miller to see what we could do. He agreed that they didn't sound like the right fit for us, and sent us for a 2nd opinion to Dr. Damion. We went there this past week and he was really nice. I told him what was going on and he immediately said we should go straight to Boston Children's and get the testing done down there instead. I was really happy with that answer!

There's a lot more that is going on, but it's hard to find time to sit down and write it all out. More updates coming soon- we are finally moving in the right direction!!