Our New Path

So I can finally breathe again, sort of! I think I may make some people crazy, like my husband. When I find out about something that requires action, I feel the need to get things done immediately and I can lose my patience when things don’t move along fast enough! I dive in to researching theories, research, treatments, etc. and don’t really get a good night’s sleep until I am comfortable with my knowledge and the direction we are heading. A little obsessive? yes. Likely to change when it comes to the well-being of my kids? Not a chance.

 We came out of Kaycie’s surgery knowing things were worse than we thought. We set up an appointment to have her ear molds made that day, and we were referred to a speech therapy location that is supposed to be excellent. I was okay with that at first because I hadn’t yet starting doing my own research. I quickly learned that teaching language to deaf/hard of hearing children is very much a debated topic. On one side, there is the view that children must learn only verbal language...if hearing aids are no longer working, cochlear implants will. On the other side, you have those who believe that speech and signing can be taught side by side. Both sides have valid points. However, being in education for as long as I was, I am very much of the mindset of giving my children all of the tools we possibly can to help her succeed. Why set limits on her before she is old enough to set limits on herself? To me, that means teaching her speech, teaching her sign language, using her hearing aids, and letting her decide one day if she wants cochlear implants. I have learned that there are a lot of pros and cons to implants…some love them, some hate them. There are risks to having them. I want Kaycie to be able to help decide one day if she wants to make that choice. In the meantime, we will fill her tool box with as many tools as possible to help her have an advantage.

I could go on about the points that are made on either side of the argument. I understand them. I do not agree with all of them. That said, the place that our audiologist recommended for therapy is strictly speech. They will not work with your child if you sign at home—nothing. I called the director myself to confirm this stance, as I was first told this by someone from the Georgia Department of Health, who is helping to coordinate her care. I was told by the center that if we signed at home, it would be a conflict of interest. I am glad I discovered this before we signed up. That said, I do not feel that there is one right or wrong way. Each family has to decide what is best for them. For us, we want her to have access to multiple modes of communication. Others may be more successful with speech only. That door closed, but many others have opened. 

As soon as Matt and I made the decision we would sign at home, we have jumped in to learning the basics. Luckily, speech or sign, she will not be speaking in sentences tomorrow. We have made a commitment to spend some time every day learning new words. So far, I think we are comfortable with 150ish words. Seems like nothing, but we have only been at it for less than a week. We have been using our new words everyday with both kids. Kaycie thinks talking with our hands can be funny…she giggles. LJ thinks talking with our fingers is fun. We were a little surprised actually, that he is so in to it. He has been consistently signing mom, dad, I love you, sleep, Jesus, milk, among others. His favorite is sleep. He regularly walks up to us and waves his hands down his face and says, “sleep.” The key is to use the speech and the signs for them to be able to make a connection. If Kaycie continues to lose her hearing, as we have been told is very possible, or if her hearing aids die, or if she loses one, or if she just decides she doesn’t want to wear them, we want her to have another option for communication. This will be a big change and journey in all of our lives…one that we are really excited about.

We have also been set up with a program called Babies Can’t Wait. It is Georgia’s Early Intervention program. To start off with, they will provide her speech therapy. During our initial paperwork, they have also determined that she is not meeting all of her gross motor developmental milestones. They have also recommended physical therapy to help her core strength. We do not yet know exactly what these therapies will look like, but we will meet again next week to come up with our plan. I am not hyper-concerned about her gross motor development yet. She has a few things working against her…she was a preemie. Even though she was not super early, it can have an effect on development and they often need a little boost. After doing some more reading (it’s a common theme around here these days…I refuse to answer questions until I have “researched” myself. It can make Matt crazy), recent research has shown that kids with sensorineural hearing loss can be slow with gross motor development because the part of the brain that controls hearing and gross motor development are right next to each other. Again, it does not mean that they do not develop those skills; it may just take a little more time and a lot more work.

In addition to speech and physical therapy, there is a program called Georgia PINES (Parent Infant Network for Educational Services). They are funded by the Georgia Department of Education and work only with infants and young children with vision and hearing losses. They will provide many resources as she hits different stages of development. They have deaf mentors that come in to your home and teach your whole family sign language. They have a variety of resources…libraries, hearing aid loaners, audiologists, special education teachers, etc. They will work directly with her speech therapist to help implement what she is learning there at home. Someone will come to our house and help us with the practical things…what does teaching her to speak and sign look like in our home environment?

We will have our days full of therapies for a while, but I feel confident that we are at a great starting point. Also, most insurance companies do not cover hearing aids. Funny enough, Matt just got a promotion at work in the midst of all of this and his insurance changed. It has made me insane…really. Right now we have no insurance policy numbers. This creates a problem for appointments. However, the new insurance should cover part of the aids. I have also discovered a grant program that we actually qualify for (most have such low income caps they aren’t even worth looking at). This means last week I submitted for the grant, included all of our OLD insurance info, and had the grant pending. Tonight I had to email them and tell them all of our info has changed. Spinning my wheels until we get the insurance info, but I say all of that because we have just been blessed that every concern seems to be falling in to place.

I have rambled long enough. My head is full of new things that don’t quite feel “normal” yet. However, we are happy, and actually excited that we are on this journey. It has already and will continue to change us, but the excitement comes with the fact that we are learning so much and realizing how many resources are out there to help not just Kaycie, but our entire family. God has us on another new path in our journey, and as always, once I get past the newness of it, I can be excited to see what is in store. We aren't going to change things, so we may as well enjoy them!

I am adding a couple of pictures from today...LJ has just been happily going along for the ride willingly and happily!

I always call him ET with how he blends in with his stuffed animals...some may think he has an animal hoarding issue going on in his bed. I may not disagree, but it makes him happy, so it works :)

Finally getting somewhere.

We finally have answers to the mystery of Kaycie's ears. Well, some answers and more questions, but we are finally making progress. Since it has been 6 weeks since this mystery started, let me back up a little bit.

 

Kaycie has always been difficult to get out of the house. When I say difficult, I mean that in the beginning, she would fuss when we took her places. I figured it was just typical baby behavior and didn't think much of it. In the past 6 weeks or so, however, things got worse. We could literally not take her out of the house without her getting progressively more aggitated within minutes. Not just fussy baby aggitated, but absolute meltdown-screaming like she was being tortured, unable to calm her, etc. It was like she was terrified. I began to realize something was not quite right. I don't know if it was the lights, the sounds, the commotion. Long story short, the doctors couldn't decide yet if it was all related to her hearing, or if she has some other sensory processing issues going on.

 

The reason I even mention this is because in the past week, Kaycie's temperment completely changed. It started with a trip to the grocery store. I really needed to go and Matt was at work, so I decided to brave it with the kids. We were there for over 30 minutes and Kaycie was awake and happy the whole time. Have you ever seen a mother with her kids tearing up in the checkout line at the store? Yep, that was me. I found myself finding excuses to take them out the rest of the week...I realize I may have been pushing it, but every single trip was a success! I think in my head I was reasoning that her hearing must be getting better. It was the only connection I could make. That said, for 5 weeks while waiting on this procedure, I had prepared myself for the news that Kaycie would need at least one hearing aid. Week 6 brought me hope, and I was just sure we would get through the procedure, and the doctor would come out and tell us that she is all better. It could happen, right?

 

I was nervous yesterday morning, mostly because I knew Kaycie would be hungry all morning. A hungry Kaycie is not a happy Kaycie. I was nervous about her being put under. However, I was not nervous about the outcome. When the audiologist came into the room, she immediately told us the news was not good. For the first time in this journey, I cried. She hadn't even said anything in detail, but I think because I had it in my head that she has to be getting better, I was caught off guard.

Turns out that Kaycie's hearing is worse than originally thought. The biggest part is that they thought it was a conductive hearing loss, which occurs in the middle ear. It can often be treated to an extent. Often conductive hearing loss can partly be blamed on fluid in the ear. She has never had any, so they did not do tubes. Turns out, it is not conductive, but sensorineural. This type of loss occurs in the inner ear. Could be bones didn't form correctly, damaged or malformed nerves, a variety of things. At this point we don't know. It will also not get better. Most likely, it will get worse. She still only has a mild loss in her left ear (30 db loss). The audiologist said that if we plug both of our ears and listen, that is about what Kaycie hears out of her good ear. Her right ear, which was at a 70 db loss (moderate-severe) with her first test, is now at an 80 db loss (severe). She cannot hear speech out of this ear at all, only very loud noises, like fireworks and gunshots. This could mean 2 things. Either she is progressively losing her hearing fairly quickly or this test was just more accurate to begin with. There is no way of knowing.

 

We were prepared by the doctors to originally expect one aid and the better ear to be able to be fixed. Since that is not the case, the plan sort of shifts. Kaycie will be getting 2 hearing aids. When we thought she may get full hearing back in one ear, things like speech development were not as much of a concern because children with hearing in only full hearing in one ear can develop normal speech without help. It may be a little delayed, but it happens. Since Kaycie does not have that benefit, we will be jumping in to speech therapy as soon as she gets her hearing aids so that we can give her all the advantages we can in developing her speech in these critical years. She will need the extra support and as we figure out what that may look like, we will make sure she has it. I am a reader. I learned with LJ that doctors are great, but arming myself with knowledge is the best way to help our kids. I may be a doctors worst nightmare. I ask a lot of questions, and expect a lot of answers.

 

For the future...we aren't sure. She will need a CT scan at some point to see if they can pinpoint the source of the loss. However, she will have to be sedated again for it. We are not in a rush to get this done because when it comes down to it, her treatment options won't change.

 

We are planning on home schooling both kids initially. This has been the plan since well before Kaycie was around. However, I do plan on putting her in preschool when she turns 2. It will mean we will have to carefully chose a school that is not only willing to "deal" with her hearing loss but embrace it and all that may come with it. One day Kaycie could qualify for cochlear implants if her hearing worsens any. However, we will re-evaluate that after she is one, or if we continue to see a decrease in her hearing. Right now, her better ear is still good enough that an implant in her worse ear would interfere with the hearing she does have in her better ear. 

 

As I said before, I am emotional about this, but we are happy. Our baby is healthy. She may have to do a few things a little differently, but we will learn as we go. We can't help but feel, and we just know, that God will use her in a special way. We are so excited to see what that is.

At Kaycie's 6 month appointment a few weeks ago, she was about 15.5 pounds, and she is hitting all of her developmental milestones...she is currently working on sitting. She doesn't have it down perfectly yet, but she is able to sit for short periods on her own.

 

Pre-surgery while she was still happy!

Post-surgery after finally getting some milk.

Post-surgery after getting some milk and a little snooze.