Learning to Communicate

Finding out you have a child that can't hear is a little bit of a shock, but as with most situations in parenting you have only a moment to let it sink in before you have to respond. The day SJ's was diagnosed we were sent home with quite a bit of reading material about being the parent of a child that is deaf or hard or hearing. That alone is a little surreal. I feel like parenthood has thrown me a few curve balls already, but nothing that required a team of experts and a stack parenting handbooks. 

  

The most important thing for me at this point is to give my daughter a way to communicate. SJ is still at a good age to pick up speech quickly, but the ideal window for acquiring a first language is half closed already. The doctors and therapist can only work so quickly. No matter how concerned they are and how much they encourage a sense of urgency it seems like the standard protocol in this field is "hurry up and wait". I can sit around and wait for the Doctors, but the thing is, I am pretty stubborn.  I am ready to communicate with my daughter now and I know that sign language is realistic way to do that. So I have been devouring every bit of information I can in this area. In less than 2 months I have acquired a 250 word vocabulary in ASL. SJ has gone from knowing 5 words to 9 which might not seem like a big deal, but those are just the words that she is producing on her own. She repeats and understand a lot more than that. It's a big step forward in minimizing frustration and educating her about the world around her. 

For example, we went to the zoo and beforehand I learned every zoo animal sign I could think of because  she wasn't going to hear me say elephant or rhinoceros, but she could see me sign and start identifying that these amazing creatures have names! Here is a little video of her signing shoe, which is basically thumping your fist together at the thumbs.

I have so much to say about sign language, which I will be sure to post more on in the near future. When SJ gains oral communication she may decide to drop signing all together or our whole family could end up bilingual. Either way I'm hooked. I know I am just a beginner when it comes to this beautiful language, but I am grateful for what it has already done for me by enabling me to communicate with my daughter. It's funny, I've been vocal my whole life (just ask my family), but for this season that I am in it's like ASL is what has given me a voice.

It's A...

It's a BOY! We were so excited when we found out because a girl would have been equally as great, but I just had a feeling I was having a boy and was vocal about it. There were a few things about this pregnancy that reminded me of when I was carrying Z. On top of that, Z had us all convinced that he was getting a brother and was overjoyed when it was official.

Someone on Facebook mentioned that now SJ would have two brothers to take care of her, and I completely agree. I grew up with 3 brothers so I know what it's like being sandwiched in-between the boys, but I have no doubt that she will be able to hold her own. Many of you know the story of how I lost my little brother Zeb. We were very close and I will always cherish the memories of our bond. Because of this experience I look forward to seeing how the relationships develop among my children. 

In other good news I am HALF WAY through the pregnancy. This is my official 5 month photo (thus the hand in the air).

 I can feel the baby moving around all the time now. I felt him for the first time on mother's day which I guess was his little way of winning me over as if he hadn't already. This last appointment confirmed that the baby and I are as healthy as can be and I feel blessed. 

Appointment Overload (I need your help getting organized)

I am glad we had a little vacation time recently because we've hit the ground running when it comes to Doctor's appointments. Doctor's visits have been a rarity in my life, but lately we've entered into a whole new terrain and I feel like a fish out of water! Here's the low down

There's me.

Z took this photo of me after my last prenatal checkup. 

I am 19 weeks pregnant. I have a dentist appointment tomorrow which had been rescheduled because of an opening for SJ to see an ENT. So we've got appointments on top of appointments. Then on Monday I have an appointment with the Sonographer for my 20 week ultrasound followed by a prenatal visit with my midwife. We have decided to go ahead and find out if the baby is a boy or girl. We thought about keeping it a surprise, but I think you will all understand when I say we have had enough surprises lately. J and I feel like some good news will be welcome and either a boy or a girl will be a reason to celebrate ( and pick out names and go shopping. Woo Hoo.).

Then there is Z who had his final appointment with his pediatric ophthalmologist in Fort Worth during our visit to Texas a few weeks ago. The Doctors visits don't stop even when we are on vacation. It was sad to say goodbye to Dr. Norman who has been taking care of Z's vision, including surgery, since Z was barely a year old, but as tempting as it is, 900 miles is a little far to drive for a check up. While Z was at this appointment he got a new prescription and it is slightly weaker. We will get some new glasses for him as soon as our medical card comes in.

Z with the glasses he's had since December '09.

Lastly we have SJ who has appointments every month, left and right. I feel like I am always on the phone with Doctor's, receptionist, therapist, or case workers. So far though we haven't seen anyone since her testing. I know it will slow down eventually, but for now it's the number one priority in our schedules.

SJ right after her ABR where she was diagnosed hard of hearing. She was still in her comfy PJ's.

This morning I was going through the mail, plus some papers I had scribbled on, and looking at my calendar, I was feeling just a little overwhelmed. I need a system. I have ical on my computer and that helps a lot, but I need a better way of taking notes and keeping all of our documents in order, and portable enough that I can take things to appointments with me when I need to, because I often do. I know some of you have the gift of organization and I know there are others that have special needs children and have probably been in my situation. How do you do it? I love technology so I don't mind using apps or programs (I am a mac girl though, so I need stuff that jives with my laptop and iPhone), but I also have paperwork, informative packets, bills, and notes I jot down when I am on the phone so it can't have everything on the computer. AHHH! So far I feel like I am juggling it okay, but I can tell that what I have going is not a long term solution. I am open to any advice, products, or tips. Please help a mother out!!!

What This Means (as far as I know)

For those visiting from the links  I sent out you, may be interested in some of these previous blog posts. 


It began with a shocking visit to the ENT. 


Then we had to wait a month to learn more.


 Finally last week we received test results.


I know that there are probably a lot of questions and this affects anyone that is involved with my family at all, so I want to be as informative as possible even if I do feel ill-equipped to explain or understand exactly what is going on. Feel free to skim through the information below and if you have any questions or advice for me at all don't hesitate to leave a comment here, or contact me on Facebook www.facebook.com/natobuch


1. What type of hearing loss does she have? SJ has had 2 separate tests to rule out the potential that her hearing loss is from something like fluid or an ear infection. What she has is considered sensorineural and to put it simply, it's the scary kind. Sensorineural hearing loss (SNHL) occurs when there is damage to the inner ear, or to the nerve pathways from the inner ear to the brain. 
This is considered to be permanent hearing loss. SNHL reduces the ability to hear faint sounds and speech.


2. The biggest question most people have (including myself) is how did this happen? The answer to this question is no fun. We don't know. We may never know. We may end up having some genetic testing done, which could potentially explain a lot. There are plenty of cases of genetic deafness where deafness shows up for the first time in the family history and at least half of all childhood hearing loss is due to hereditary causes.


3. Another big question is was she born with it? I am already seeing a pattern here in that there are no easy answers. We never had a newborn screening done, but it certainly looks as though she could hear (at least to some degree) at one time. 


4. So then could she continue to loose her hearing? I emailed this question to our audiologist, so I will give you her exact answer. 
Right now, it's unclear if her hearing loss is considered"progressive" because it's the first time we've had a documented hearing loss.  We will continue to monitor it so we can answer that
question.  Genetic testing may also answer this question as well. 


5. Is she deaf? Ah, another question with a complicated answer. In one of the pamphlets I was given deafness is "a loss of hearing, which is severe enough to make it hard for a person to understand speech through hearing." So this would describe my daughter, but she has enough of her natural hearing available to amplify through hearing aids in order to understand speech. At this point I understand that SJ is considered hard of hearing. 


6. Will she learn sign language or talk? Both. The audiologist is aware of the signing that we have been doing with her and she encouraged it. I have been told that she will be able to learn English and I look forward to this since that is a big part of our lives (obviously), but I am also very excited about learning to sign. I break it down to 3 reasons we've considered this option.


 1. SJ at this point has no way of hearing or talking to us other than sign, so for now I'll take what I can get. 2. Even with the hearing aids there are certain times she would need to take them out or the potential that they could malfunction and I would not want to have her communication with us completely dependent on the use of aids. 3. Question #5 was complicated because deafness and hard of hearing go hand and hand and they aren't as far apart as some would think. SJ can probably relate to a deaf child as much as she would with a hearing one, if not more. If she wants to be involved in the deaf community I embrace that and ASL would make it easier for all of us to communicate in this area. 

7. What can she hear? Right now with no hearing aids SJ hears at about 70 dB and below. We were given an audiogram for her that shows that she can not pick up any language at all. She can hear really loud machinery or music, but not like we do. Even fireworks or an airplane would be muffled and subdued to her. That is why she does not get startled. I asked the Doctor what percentage of hearing loss she has and although they don't like to break it down in that way, she would say she has a 90% loss. This was the part of the appointment where my jaw hit the floor. 


8.  What about the cochlear implant? I brought this up with my audiologist, not because I was interested in it, but because I knew it was all the rage when it comes to hearing and that other people would ask. For those that have never heard of a cochlear implant, it is surgically implanted hearing device, a "bionic ear" of sorts, that will pick up sounds and transform them into electric impulses. While this procedure has done wonders for many people it is also extremely invasive. At this point no cochlear implant for SJ. I am not saying that it won't come up again, but our audiologist doesn't feel like it applies to our situation at all at this time.


9. What happens next? I am supposed to be contacted by several different specialist and have been informed of the urgency in getting the ball rolling with SJ in this very critical age of learning to communicate. She should have hearing aids by the end of the month and has already been fitted for the pink Otticon hearing aids. It is going to take a team of people  to help our little cupcake and this team includes; The pediatrician, ENT specialist, Audiologist, Speech therapist/speech-language pathologist, and of course friends and family. 

10. Is there anything we need ? We have such a great support system, it is incredible. Financially everything so far has been covered by CHIP. It's the first time in our lives we have ever had any governmental assistance and the timing couldn't be any better. If we were on our own in all this we would be sunk, but God is in control. I would LOVE to have help learning sign language and I know several interpreters but they are all out of state and that does make it a little more difficult. We can always use prayer. Specifically that the Lord would bring all the right people into place. We still need to find a decent pediatrician. Other than that, the thing SJ needs is just for all of us to be chill. I am preaching to myself here, but as far as she knows nothing is wrong. It's not like I can explain it to her anyway. She is just a typical two year old that runs around, watches nick jr., throws tantrums, and has learned to adapt. She still needs people to talk to her, even right now while she can't hear. If you know any signs at all feel free to use them. I am the worst at feeling self conscious about it in public because I feel inadequate, but I am working on getting over what other people think. 


Whew, so that is all the information overload I have for you today. On behalf of SJ and our family, for anyone who has taken the time to care, I say

  

Processing the Diagnosis

Thursday night I kept SJ awake as long as I could so that she could maybe, just maybe, sleep through her screening at 8:00 the next morning. 30 minutes before we went in I gave her some children's Benadryl. I think it's important to mention that my sister in law is an experienced pediatric medical professional and  instructed me on the exact dosage for SJ's weight along with how long it would take affect. I am in no way suggesting anyone should use any kind of over the counter drug as a sedative without a doctor's supervision.

We arrived at the hospital early. The office wasn't even open yet. We aren't punctual people by any stretch of the imagination, so the fact that we were 30 minutes early is a little hint to just how anxious we were to get this testing done. When we met with the doctor she looked like she was younger than me (and I'm 29). J and I were a little caught off guard by the fresh face that must have just graduated from college.  I guess that was just another lesson in not judging a book by it's cover, because we couldn't have asked for a more qualified, caring, or personable audiologist. Casey was a God send. She allowed us to cut the lights to keep SJ asleep. Every now and then when SJ seemed restless, she encouraged us to take our time and do whatever we needed to do to comfort her. Seeing my baby girl curled up in her floral thermal pj's just as cozy as ever made me wonder how someone so peaceful could possibly belong to me. I was a sleep deprived nervous wreck and I can't even tell you whether or not I breathed for the 2 hours that we waited for the results.

The ABR began with doing an alcohol rub and exfoliating her face where the sensors would be attached. The test was so sensitive than any little bit of dead skin could have interfered with the results. For a while I just stood over her, covering her in prayer and worshiping silently.There were a couple times that we had to stop the test to readjust the clips that were attached all over her ears and forehead, but most of the time the screening  was uneventful. So uneventful in fact that at one point J was snoring. I wish I could fall asleep, or fast forward, or anything just to know how all of this would end.

After about an hour of sitting in silence I pretty much knew that today we were going to find out something. SJ had done a fantastic job cooperating. Part of me had wished that she were still in diapers or taking a pacifier, because I was worried that she would cry or need to go to the bathroom, but it's been months since she had a diaper or pacifier. In the end I guess it was just a reminder for me as a mom to know that despite whatever I was about to find out I still need to let her grow up. She is going to get through this because she is strong and capable, not because I baby her and protect her for the rest of her life. (By the way this has nothing to do with potty training or pacifiers, just a personal realization for me in this moment).

Eventually the lights came back on, the Doctor commended her for how well she did, then sat down to tell us the thing that, deep down, we already knew. SJ has severe hearing loss. She said the right ear is a little better than the left but not by much. Dr. Casey was thorough while allowing for questions between all of the details. After all was said and done Dr. Casey looked at my tear filled eyes and said something to the effect of, 'I know that this is difficult. It is a lot to take in and I don't have children of my own', and she placed her hand on her heart and continued sincerely, 'but I can only imagine how you must feel. The thing I want you to know though is that she is going to be fine. She will succeed. This will NOT set her back. A few years from now you will be able to have a conversation with her and she will be communicating like her siblings.'

I plan on elaborating on all of the technical details very soon, but in short, she is going to have 2 hearing aids that will allow her to hear voices and process language. I think we are all handling it pretty well considering we've had a month to prepare. I was originally so upset about having to wait so long for the test, but now I see that it is what I needed just to ease into this whole idea. I explain it like someone handing me a football. The first time I was told my child had hearing loss I was in denial. It was like I was handed a football and just thought Um, what is this? and gradually I became accustomed to the idea until I was ready to get in the game. If one month ago they told me the conclusive results of SJ's hearing that I know now, it would have been as though a NFL player chucked a ball at my face. It would have knocked me off my feet. I would have been overwhelmed and unprepared. There are still a lot of unknowns and I am sure some days will be easier than others, but we are handling all of it one step at a time. Kind of like this video of SJ's first steps.



It's a little wobbly, at one point she looses her footing, but she gets back up and keeps trying. Of course these days we can't keep up with her because she's running, climbing, and doing acrobatic stunts all over the place. The song I put this video to says "We'll learn together, you and I" and that pretty much sums it up. This is new for all of us. We don't know of any family, immediate or extended, that are deaf or hard of hearing, but we are all going to learn how to do this together.


I will end with the words I wrote to SJ on her 2nd birthday not that long ago;

 I hope and pray that you always break the mold. It would be a shame to stifle the unique, creative individual that God created you to be. The sky is the limits as far as what you can become. Don't let the world distract you from that. Stay beautiful. Stay true. Keep being you.

Butterflies and Horses

We just got back from our first trip to Texas. We've made the trip from Texas to Kentucky and back dozens of times, but this is the first time Texas was the destination. The main purpose of the trip was a wedding that I was photographing and J was officiating. I was a little leery of the timing once we got SJ's diagnosis. I figured I would be distracted and unable to relax. In fact we had to cut  the trip a little short just to make it back in time for her hearing screening (which is tomorrow). In the end though having two weeks of vacation just visiting with friends and family was exactly what I needed. We spent a lot of time at my in laws "farm" where I thoroughly enjoyed lounging by the pool everyday and reading the Hunger Games. For the record, I had absolutely no intentions of getting involved in any of that hunger hype, but my sister in law stuck the first book in my hand and by the time I left I was into book 3. One of the most refreshing aspects of the land out there is being surrounded by vast open countryside speckled with colorful flowers, a menagerie of butterflies, and the family horses. 

They did not hesitate to use my pregnant belly as a landing strip. 

The entire visit was such a blessing. Tomorrow will be a big day for us. I don't plan on getting any results until Thursday, but even with as much as I try to trick myself into focusing on next week I still get very nervous about tomorrow. It's hard to believe in 24 hours we will be on our way to the hospital, in the meantime I am praying for peace.