Big changes ahead!

Well, we've got some big news and have already had a lot of questions so we thought we'd take to the ol' blog to announce/explain what's going on.

The news is that we, as a family, have decided to get Weston cochlear implants. And it's happening this Wednesday (April 10th).

We haven't talked about it a lot because it usually generates a long and sometimes exhausting conversation. We absolutely welcome questions and we really want everyone who has a relationship with Weston to understand what it means for him. We're going to address the most common questions and responses here one by one but feel free to reach out if you have more questions.

Reaction: "Wow that's so exciting! Good for him! That'll be so life changing. [Other excited reactions!]."

Response: What we want to say (mostly teasing): Your hearing bias is showing. :)

What we usually say: We are really excited but not for the reasons you may think. Weston is a very happy and capable kid. We are confident he can do anything he puts his mind to (as he has proven in many ways) regardless of any sort of hearing technology. What this is, is essentially an equivalent of him entering a dual language immersion program. Hearing (and speaking English, IF he is able) will simply be another skill that will enhance his life, that's why we are excited. Our excitement is not focused on him talking, hearing music, or other hearing specific perceived life benefit (see below).

Reaction: "This will improve his life so much! He will be able to navigate his surroundings and relationships with hearing people with ease!"

Response: What we want to say (mostly teasing): Again, your hearing bias is showing.

What we try to explain: As hearing people (us included) we cannot fathom a life of silence as a blessing, a positive, or a gift. We have spoken with many parents who have had to mourn the fact that their child is deaf. This is absolutely natural! We of course have a hearing bias because we are hearing! And most of the people we know are also hearing. However, spending time with Weston, exploring, and talking to him about his experiences has shown us that there is nothing lacking in a life of silence. Us hearing folk, often lament about music specifically. "Oh, how sad that he cannot experience that." Weston experiences music in his own unapologetic pure way with or without hearing devices. As he begins to experience sound, his relationship with music may change. However, we do not believe accessing sound will impact his quality of life. He is confident in a way we seldom see in 6 year olds. We credit that to an innate sense of who he is and a confidence in a life that is wonderful, even without and possibly because of the fact that it is silent. He may find more ease in communicating with the general public and hearing friends and family because of the implant but we don't think his quality of life will "improve" in the way our hearing bias would assume.

Question: "What made you change your mind?"

Answer: We didn't. Weston is proud of his deaf identity. In our many discussions leading up to this decision, he has actually stated that he really enjoys silence (haha!). But he also really wants to learn to speak to his cousins, friends, and strangers. It is important to understand that this has been 100% his choice. Since last summer he has engaged us in regular conversations about learning to speak and getting an implant. We put it off as a phase at first but he has been persistent.

It has actually always been the plan to allow him to gain a foundation in sign language and confidence in his deaf identity and then allow him to make his own decisions in regard to aids and technology. You can read more about that (as well as our general opinion of cochlear implant technology) in the blog we wrote way back in the day. We didn't expect it to happen so soon but we have spent a lot of time making sure he understands what he's asking for. We've spent a lot of time trying to understand his motivation. We feel confident he understands what he's getting into and he's doing it for the right reasons.

Question: "So does that mean Weston will be able to talk?"

Answer: Weston's primary language will likely always be ASL (so don't stop learning!). Cochlear implants have varying results. Some of the factors that can affect the results are: cause of hearing loss, extent of hearing loss, age, anatomy, mental capacity, dedication to post-operation therapy and probably a few other things. So the short answer is, no clue. Weston's age is working against him as the brain's auditory/language development years are coming to a conclusion. He was born with some hearing and has worn hearing aids since 6 months so that is an advantage (the brain has had exposure to sound of some sort). He's also a genius, so there's that. :)

If he is able to hear and identify speech, it will still take months and even years of weekly speech therapy to be able to process the sound, make sense of it, and replicate it. Even in the most "successful" cases, cochlear implants still only provide a distorted version of the sounds we hear (with little volume control or directionality). As such, it can be overwhelming or hard to focus, especially in large gatherings. Again, if you plan to be part of Weston's future, this is not an escape from learning ASL (hint hint).

Question: "What all does the surgery entail?"

Answer: We're no experts but we'll try to explain it as it's been explained to us. A cochlear implant is made up of two pieces. There's an internal device and an external processor. They make a 1 to 2 inch incision behind the ear and pull the skin back in either direction to access the ear cavity as well as the skull directly behind the ear. It'll be a 2-3 hours outpatient surgery with stitches and no pain medication prescription, just ibuprofen (or so we've been told).

The internal device has a small but powerful magnet that is embedded under the skin behind the ear. It has a long skinny silicone tail that wraps inside the cochlea, essentially bi-passing most of the inner ear. The electrodes on the device make a direct connection to the brain through the nerves in the cochlea. (pictured below is the internal device Weston will be receiving)

The external device is not activated until the surgery is healed (about 2 weeks). There are multiple kinds of processors but the most common one looks like a big hearing aid that hangs on the back of the ear (but without the molding that fits in your ear). The processor is where the actual technology is. It has microphones, a battery, and even bluetooth capabilities. The processor has a wire that can be attached and detached to the internal magnet, sending the sound directly to the brain.

Summary:

Our biggest fear and ultimate hesitation in moving forward with this has been a fear of changing him. He is a freakin cool kid! And not just because he's deaf. That's just one piece of his identity. He is confident, he dances instead of walks from Point A to Point B. He is brilliant and loves competition. But ultimately, he has expressed a desire, has communicated understanding and expressed eloquently what he wants and expects from an implant. As parents of such an amazing human we can only support the desire with all the passion we can. So here we go!

Camden Jared Hyde

A post not about Weston or deafness! Since Camden has official joined our family this may be a new trend!!

** For journaling sake: Camden Jared Hyde, born 1-14-15 at 1:38pm. Weight: 9lbs 5oz Height: 20in even

It's late and I'm tired and yet I can't sleep. As I sit here in the hospital with a perfect little one lying next to me I can't help but reflect on the experience I have just had.

I'll just start by saying this pregnancy was a tough one. Though sickness in the beginning was mild this babe grew, FAST! By 30 weeks I was no longer sleeping. At 35 weeks I started having regular braxton hicks. Every other night until this baby was born I was up with contractions for 2-3 hours. I was dilated to a 3 at 35 weeks and 70% effaced. I stayed like that until 38 weeks when I finally showed change being dialted to a 5 and 75% effaced. I was huge, uncomfortable and so tired! And yet, the little baby inside me decided to hangout and come when he was good and ready. I had so many contractions lasting for so long that I refused to be excited when actual labor started (because I thought I was in labor several times). However, the night of the 13th I started to have contractions and this time they didn't stop. This is where my journey through natural childbirth began.

Before I start I'm going to introduce some people so I can freely name/title drop later (if you don't care skip ahead). First, Julie, our midwife. Some folks are confused as to why I would choose a midwife and its usually because they don't know what a midwife is. We used a CN (certified nurse) midwife, which is a medically trained professional. They are not qualified to perform surgery (C-section) and thus is the difference between them and an OB. So why a midwife? I think this paragraph from babycenter.com mirrors my thoughts, "Births attended by CNMs usually have fewer interventions – such as continuous electronic fetal monitoring, epidurals, and episiotomies – without any difference in outcomes for women or their babies. Women who opt for midwifery care tend to have a lower rate of cesarean section, too. In general, midwives tend to have more time to answer all your questions and help you learn about the physical and emotional changes you experience throughout pregnancy." Second, Courtney, our doula. When people hear doula they think of hippies and home births. However, a doula is just a title for someone who knows an INSANE amount about women and babies. They are there to provide support and comfort. They are like this awesome book of answers and solutions for anything that ails a women giving birth. Basically, if you are planing a natural birth get one, they are awesome!

And roll Camden's birth...

Tuesday I had been having contractions on and off all day. At this point in the pregnancy this was not uncommon. I went to see my midwife who stripped my membranes and informed me I was dilated to a 5. A 5 and still no baby!! I left defeated, feeling like this baby was never going to come. That night my contractions were closer together. My mom, who came in town on Sunday and was just as anxious as me for the arrival of this baby, suggested we start timing contractions. However, when they were only coming every 15-30 minutes we decided it was a waste of time and went to bed. However, I never did fall asleep because contractions were keeping me awake. I decided to take a bath around midnight. Finally, contractions got closer together and strong enough that I knew this was the real deal. I tried to sleep with no luck. I decided a shower would feel better than a bath and Jesse called our doula and told her we'd meet her at the hospital in an hour. 

When we got to the hospital our doula was already there. She had already informed the nursing staff we were headed in and scored us a room with a tub (awesome!). I got there signed a paper and was good to go. The check in process was so much easier than it was with Weston.  We delivered at St. Marks Hospital and the L&D nurses were fantastic! I was checked in and as per hospital policy hooked up for 20 minutes of monitoring. With Weston I was forced to a bed for these 20 minutes but the nurse this time around made sure I had some cord space to wander the room and bounce on my yoga ball. When it came time for my IV they easily placed it in my arm so I had full function of my wrists and elbows; essential for a natural birth. Also,  instead of insisting on an IV they connected a hep lock instead. The whole thing was exactly how I wanted it and I didn't have to fight for anything. 

Once I got to the hospital labor seemed to slow a bit. I was getting depressed again thinking that this baby was just playing tricks on me. My doula suggested all sorts of things to help speed things up naturally and avoid pitocin. We went for walks, did some exercises to move baby (he was posterior), and even borrowed a breast pump from the MBU for a little nipple stimulation (TMI, sorry). It worked! Things after that sped right up. Up until this point labor felt controllable. I felt good and was really confident in my ability to relax and manage contractions. It was calm and peaceful and I felt connected to my husband (who was awesome support). I didn't feel like I was in a hospital. I had freedom to move, the nurses rarely bothered me, and my doula helped Jesse keep me relaxed with massages and counter pressure. It was great. Once things picked back up and started to progress again I got in the tub. At this point I was at an 8. Sometime in the tub I went from remembering and loving the experience I was having to feeling like I was having an awful out of body experience. I believe they call this phase of labor transition! Transition was everything people tell you it will be, terrible! I stayed in the tub during the entire thing. Time faded away and I entered my zone. I don't really remember what I said, how long I was in there, who was in there, etc etc. Things just kind of faded away. At this point I had been awake for 36 hour and laboring for 11. I was tired and fading in and out of my focused state/sleep. When I started to show signs of wanting to push it took Jesse, Courtney, Julie, and a couple nurses to get me out of the tub. I was determined I was not leaving and put up a good fight! They got me to the bed where they realized that I wasn't quite at a 10. They let me relax through a few more contractions hoping it would help get me there. When they checked me again they realized there was a small lip of the cervix stuck on babies head preventing me from dilating fully. At this point baby was distressed and getting him out was top priority. Thus went my comfort and when the next contraction hit my midwife stretch that lip of cervix over his head. I don't know what death feels like but I'm sure its something like that. I do remember screaming "What are you doing!" After that it was 15 minutes of pushing and out came baby. 

At the time I was so completely tired and hurting that I wasn't fully able to grasp what had just happened but it felt beautiful. Jesse was crying and though I felt like I got hit by a bus (or a 9lb 5oz baby named Camden) there was a calm in the room and you knew something amazing had just happened. 

I have now done both a medicated and non-medicated birth. They were completely different experiences. Weston's birth was beautiful in it's own way and there are definitely things I loved about it that I didn't love about a natural birth. Camden's birth however, provided me with complete agency over my body. I had a sense of control like I was being guided through it by something divine rather than a doctor looking at a monitor. It was so extremely hard but it gave me confidence in myself and in my body. It also brought me insanely close to my husband. With Weston, once I got the epidural I really didn't need support because I couldn't feel anything. My husband became a by stander to the whole experience. However, this time around he was an essential part of the birth and I think that helped connect us as a couple. 

The whole experience was overwhelming. It was so hard and yet so perfectly wonderful that my mind still can't fully grasp it.  

Stay tuned for Jesse's side of the story and pictures!

Cochlear Implants

When I tell people Weston is deaf the following conversation occurs;

"Cool, I had a high school friend (co-worker, neighbor, other random life acquaintance)  who is deaf. They had one of those implanty things. Are you going to get one for Weston?"

"Lengthy explanation about how we feel about cochlear implants including more information than said person was actually wanting."

I love when people ask questions about Weston's hearing. Though it's usually to their detriment since I have enough thoughts, experience, research, opinions, etc to occupy hours of their time. But since this is definitely the #1 most asked question I think it deserves a blog post of its own. Hopefully it will reach many eyes and help people understand us a little more.

When people talk about cochlear implants they usually ask if you are pro or con. As if you can't have any other opinion. I have found that people assume if you don't have one you must be against them and if you do have one you are pro implant and thus anti deaf culture. However, the more research I do the more I realize this is not the case. As I have met several different children from several different situations along with researching my face off I have learned that getting a cochlear implant has nothing to do with opinions about the device itself and everything to do with what's best for the person receiving it. So if you ever hear me talking about cochlear implants or about my opinions of them then know that it is based solely on MY experience with MY child.

That being said I will now insert the above alluded explanation of cochlear implants.

Jesse and I have been researching cochlear implants since the day we found out Weston was a candidate. Let me just say they are amazing pieces of technology! They can do seriously awesome things. Some of the different brands we have looked into can do a variety of things including recent waterproof versions, bluetooth enabled versions, ones with removable magnets in case an emergency MRI needs to be performed, etc etc. They can do some seriously awesome things.

However, one myth that people often are led to believe is that they cure deafness. Which isn't quite accurate. Cochlear implants can do these amazing things because it is super advanced and awesome technology but it is still just that, technology. It is not miracle grow that helps regrow the lost and damaged nerve endings in the cochlea. It is actually a device that attempts to replace the lost function of the cochlea with a silicone version. It does an amazing job at tricking the brain into hearing sound. However, it does not have a button to push to help the brain interpret this sound. Even though we hear sound it doesn't mean our minds can understand it. Just like you may hear a foreign language. Just because you hear it doesn't mean you are able to use it in any useful manner. People fail to realize that after a cochlear implant is turned on a person will still need several hours, weeks, years etc of intense speech/language therapy. Some people are able to use the device to develop speech and others aren't. Just because a person gets an implant doesn't guarantee that they will have success with it.

While fear of non-guaranteed success does weigh on our minds it is surely not our deciding factor but good information for people to understand. Our major concerns our these:

1. Weston is deaf, period.
Weston will always be deaf no matter what device we decide to put in his head. As parents we think it is vitally important for him to understand what that means. Being deaf is an identity. He was born into a culture, history, and legacy because he is deaf. Jesse and I want him to learn what that means and embrace it. I have terrible eye sight and thus need glasses or contacts to function at all in daily life (driving, reading, seeing 2 feet in front of me, etc). So, if I were to ever lose my glasses I would be lost. Applying this to Weston; he uses aids or could use cochlear implants to help him hear. However, there will be situations in his life where these things might not be there to aid him. In these situations we don't want him to have to be lost. So we are trying to give him the tools of sign language, deaf culture, etc now so he can use them for all his life.

2. Making a huge decision on behalf of another
Jesse and I have greatly struggled in this particular area. Whether we implant or not we are making a decision that will forever impact our child. If we implant then we are electing to place a device in his head that will be there forever unless he elects to have surgery to remove it. We are choosing for him to speak and be in the middle ground between the hearing and deaf community. On the other hand, if we don't implant him we are potentially taking away his ability to speak and forcing him to be part of the deaf community. Either way we are shaping the direction of his life. Kind of a scary deal if you ask me. We feel more peace by not implanting because it is not as permanent. We don't feel comfortable electing on his behalf to have major surgery where a permanent device is implanted in his head. We feel that it is his body and because it is an elective surgery we will wait until he chooses to elect it for himself.

3. Following Weston's lead
I have spent time with several deaf children with/without implants who love sound. Parents have the ability to see what their children love. A parent who notices this love of music and sound in their deaf child may choose to implant because that's what their child wants and they recognize that. Jesse and I have seen a pattern in Weston since day one. I wish I had on camera the first time we took Weston into a room of deaf people. Everyone was signing and his face lit up. Even though he had never seen sign before, you could see in his eyes that he knew exactly what these people were saying. He recognized his language. His enthusiasm for sign has only continued to grow. He signs so much, most recently signing his ABC's and days of the week. He is a sponge for ASL. As his parents we feel confident that not implanting is right for him right now. We are pouring all our focus into the deaf culture, community, and language and Weston is eating it up.

After reading this you may say I am indeed anti cochlear implant but that is not the case. I just believe in the right timing. Will Weston ever get an implant? I don't know. But for now Jesse and I feel greatly at peace that Weston should wait. If he ever desires one, then I will do everything in my power to get him one. Weston is developing quickly and is not behind in any developmental milestones. We feel confident he will continue to be successful and happy regardless of whether he is implanted or not.

Update on Life

I sat down to write another update about Weston and the latest on his hearing but then I thought, "Hey, maybe people want to know whats up with Jesse and I." So I'll fill you in.

Now lets go back in time six months:

Jesse and I have been in our beautiful new home for 5 months when we apply for a job in Salt Lake City at the suggestion of a family member. We didn't think we would get it so we moved on with life. About a month later we were in SLC for a family reunion and we arranged an interview while we were there. In two more weeks we find out Jesse got the job. To put the icing on the cake he starts in SLC in 3 weeks!! In a mad dash we find renters for our home in Rexburg, find a place to live in SLC, pack up and move!

Fast forward to the present:

Jesse loves his new job. He is working as an analyst for Hewlett Packard and doing so well. His coworkers jokingly call him the golden boy because he does so well and his boss is always singing praises to his name. I'm going back to school (Salt Lake Community College) to get my applied associates in American Sign Language Interpretation. I love it. Because I already have a bachelors degree I get to skip a lot of classes and just take sign classes. It's so rewarding and I love the "me" time I get each week. I go Monday and Wednesday nights from 5-9:30 (2 classes) so Jesse stays home with Weston. I love that man for supporting me always! We meet with a deaf mentor as a family once a week for an hour to learn sign. Our sign is coming along! Weston is starting to sign himself. It's probably to most adorable thing. Imagine your child babbling with his hands. I love it! I think my favorite is when he reads books. He'll pick up a book look at the page, set it down move his hands and arms, and then pick up the book and turn the page. It's his little way of reading the book to us. It's SOOOOO CUTE!! And drum-roll.... We're buying another house! We're moving in two weeks (or less). The house works perfect for our little family. And as an added bonus, our next door neighbor is a deaf woman and there is a deaf family that lives around the corner. It truly is a blessing from the heavens!

Weston is soo close to walking and he thinks everything is a game. He is growing too fast! His favorite things to do are read, pull things out of containers (including the trash, YUCK), and play in water (including the toilet, DOUBLE YUCK)! His favorite foods are oranges, green beans, and bananas. He loves to play catch and chase balls around the house. He is still the happiest baby I know (though he is getting over a serious case of the mommy's). I'm learning more and more how weird he is: he is 15 months old and is still taking 2 2-hour naps, going to bed at 7 or 7:30, and sleeping in until 7:30 or 8! Weird, yes. Awesome, YES!!  He is OBSESSED with high fives. He wants every stranger we meet to high five him. He is finally a busy body and is making church a nightmare (3 more months until nursery!!). He is so fun and we are blessed to be his parents .

That's an update on us! The next blog will most likely be an update of Weston's ears (it's kind of the main focus of our lives right now). We have been guided by the Lord and have been so blessed. God is Good!

Here is some of my favorites from Weston's 1 year pictures. CUTE BABY right here!!

Thanks to my Sister Sarah for her awesome photography skills. I love them, as always!

Hearing Update

Since we moved to Salt Lake we have had access to so many more resources for our little Weston. We live 15 minutes from both schools for the deaf, the deaf community center, and Primary Children's Hospital, who have the countries leading pediatric audiology department. It has truly been a great blessing (which both of our moms made a point of before we even realized how much was available to us).

When we started early intervention services here in SLC they immediately referred us to the Utah School for the Deaf and Blind to do some further testing. This is an awesome resource. They are a public school that uses a large majority of their budget to keep an up-to-date audiology clinic in their main office! They offer free testing for kids with hearing loss in the Salt Lake area and are sooooooo kind!

We took Weston there to do a sound booth test. Which is basically what it sounds like. They put the child in a sound proof booth and put fancy medical ear buds into their ears. They then play sounds ranging in volume, frequency, and type and check for a response from the child. While this test is helpful, with someone as small as Weston there is a margin of error of about 10db in either direction. A lack of response can be attributed to a boring sounds, loss of interest, sleepiness, etc. His sound booth results were showing that he was responding at 110db in his right ear and 50-60db in his left. (If you remember from previous posts normal hearing range is from 0-20db and speech sounds occur at about 40-55 db.) After looking at his tests the audiologists at the school referred us to Primary Children's to have another ABR done.

What is a ABR you ask? An ABR is an auditory brainstem response. While the child is still/sleeping they hook electrodes to the babies head. They are checking the response from the brain which reflects the response of the inner most part of the ear. They again put in fancy medical ear buds and play sound of different type, frequency, and pitch and check for a response. This test is more accurate because the child is sleeping and the responses are more like a reflex that the brain automatically produces.

Now that Weston is older getting an ABR isn't as easy as it once was. Because he is so active to get proper results they have to use sedation. They use whats called conscious sedation. Basically a deep nap where he still has control over his own breathing. We had to be admitted to the hospital to perform this test because the drug is administered through an IV. We got there at 9:30am and were there until 1:30. It was a long day! Weston couldn't eat for 6 hours before the test and went more than 12 hours without food. When he woke up from the sedation he was mad!! And very very hungry! They weren't successful with the first IV and had to do a second, he didn't love that. And he kept waking up from the sedation in a crying daze (kinds of like a night terror kind of reaction). But other than that it went really well and we got really accurate responses/results.

We had an ABR done when Weston was 2 weeks and again when Weston was 4 weeks. Both of those showed that Weston's left ear was hearing well within normal range and that his right ear was registering sound at 75db. His newest ABR shows that his left ear is hearing at 60-70db and that his righ ear is showing less than 90bd (90db is the lowest an ABR can detect and at this level Weston had no response). Needless to say, his hearing has gotten much much worse, dropping below hearing speech in both ears.

Game Plan: We went to see our new audiologist who fitted Weston for a new hearing aid and 2 new ear molds. We bought his first hearing aid when Weston was 2 months old which is decently high powered. They are going to move this aid to his left ear and we are borrowing another, more high powered, hearing aid from Primary Children's for his right ear. We will see how he does with that. In six months or so we will go see a cochlear implant specialist and explore that option. Tomorrow we are going to see an ENT who will explore more medical possibilities of the hearing loss and work to find a cause. He will most likely do a scan of Weston's ears for which Weston will have to be sedated again. Since he will already be sedated we will try to do another ABR at that time. Because the eyes and the ears of a fetus develop at the same time we will also go to see an optometrist just to make sure everything is fine there.

We are at the very beginning of a long process of doctors, tests, potential surgeries, etc. BUT at least we are on a path. In Rexburg we weren't moving forward or doing anything about his hearing, we just didn't have the resources. Moving to Salt Lake has been such a blessing for Weston. We are finally moving forward!!

Side note: For those of you who didn't know, we kind of got the job in SLC out of nowhere. Jesse applied for the job with no expectations of even being considered for the position. When we got it (and when every other more hopeful application fell through), we felt like the Lord was directing us to Utah for some reason (and we were very reluctant to leave). We didn't know why for a really long time, but now we see that the Lord was very directly looking out for our family. Thanks to everyone who has been fasting and praying for us and Weston. Even though things haven't turned out the way we hoped, we have been filled with peace and have been blessed with resources to help us along the way.

Why Having a Child with Developmental Delays is Hard

Warning: This post is long but I have included pictures (that have nothing to do with this post) of potentially the cutest baby to ever live to help you get through it.

The Developmental Delays:
If you're following our blog (or our lives) you already know that Weston was born with profound hearing loss in his right ear. While we have remained optimistic of a fairly normal life and development, as he gets older we are learning that some adjustments may need to be made in our thinking. Since we've moved to Utah (oh, and if you didn't know, we moved to Utah. A blog about that will come in the future) we have been in contact with DDI Vantage, Utah's early intervention program. After several rounds of tests we are learning that Weston is actually a lot farther behind in his receptive and expressive communication than we thought. We assumed that with his hearing aid and his one good ear that he would hear close to normally and develop normally. However, his therapists are worried there may be something we aren't catching in his hearing tests to date, a ringing or static in his hears or deficits in his left ear as well, etc. Weston's receptive language (what he understands ie: his own name, common words, etc) is measuring at a 5 month old level. Example: Weston does not even respond to his own name. His expressive language (how he communicates) is measuring at a 3 month level. Example: he still doesn't make any consonant or babbling sounds. Overall, Weston is a lot farther behind than he should be having one good ear and an aided ear. Conclusion: there is something we are missing and the unknown about his condition just got that much larger.

Now, why being a parent to a child with developmental delays is hard. This is no longer just about hearing loss but I imagine all parents who have children with delays have felt something like this at some point.

1. Responsibility
I feel a great weight of responsibility. In that, even though I know his condition was probably unpreventable I still feel like somehow it was my fault. That being said, as children develop there are things parents can do to help aid the process (games, certain toys, face to face time etc) and its here that I feel the greatest weight of responsibility. As a parent with a child with any sort of delay you are going to experience a million tests. When your kids are younger a lot of these tests are performed by asking the parents questions about the child. The more questions you are forced to answer "no" to the worse you feel as a parent. You feel like you're not being a parent at all, that you're not spending enough time working with your child, or that you're not helping your child enough. You start to wonder about all the things you're doing that could be holding them back or all of the things you're not doing to propel them forward developmentally. While feelings of inadequacy among all parents is common, a parent of a developmentally delayed child calls into question every parenting decision they've ever made and forms stories in their head of how those decisions caused the child's delay. The challenge then lies in dealing with and ignoring these feelings.

2. The Unkown
The unknown is potentially the worst part. Not knowing what your child's future will be like. Not knowing how to help them. Not even knowing what's wrong and what's causing their delays. Not knowing the answers to peoples questions. It is hard to patiently wait in the dark for the next test results that may or may not help you understand. I don't know how to describe it except just that. Not knowing is hard it leaves too much room for "what ifs."

3. Protection
Any parent feels an overwhelming amount of pride in their children. Us parents, we're a protective bragging bunch. Even though my baby is 10 months old I have already spent a significant amount of time worrying about how people will treat him. Since he is not speaking yet our therapists suspect he may have an accent (another unkown), he will most likely have a hearing aid, he may have an interpreter at school, etc etc. Anyone who knows my son knows that he is just a little angel. Seriously, the sweetest little boy. But he's also very very sensitive. The thought of my child being hurt because of someone's cruelty or ignorance breaks my heart. My mother bear instincts have already kicked in and I'm sure they will only continue to grow as I am forced to fight for my son.

Conclusion:
As a parent there are a million things to worry about. As a parent of a child with developmental delays it adds an extra oomph to the worries, fears, and heartaches. We love our son. He is a blessing and we would not take him any other way. Raising him will have some extra challenges. However, knowing the struggles at the beginning of and throughout the journey make the success that much more sweet!!

Weston's Ears

If you read our last post you know that Weston had struggles after birth. His fever was so high that they gave him an antibiotic. Before giving him the drug I was required to sign a waver agreeing to give him the drug because it has been known to cause hearing loss (1 in every 10,000 cases). Because he was given this drug they were required to do a brainwave hearing test before he could leave the hospital. Which Weston passed in his left ear but failed in his right. It is actually common for babies to fail the hearing test in the hospital because of fluid stuck behind the ears etc. So from there we were sent to a hearing specialist who retested his hearing.

When we arrived at the hearing specialist he was confident that Weston would pass because 98% of the babies he retests from the hospital do. I knew something was wrong right away. Our doctor kept looking at the screen then going over and rechecking to make sure everything was hooked up right. He explained that Weston wasn't responding at all to speech level sound in his right ear and compared it to the results from his left. After that he did a pressure test to make sure all the parts of Weston's ear were functioning and that there wasn't liquid from birth stuck there. Weston passed that test which means that his hearing loss is not because of a damaged ear but is caused by nerve damage. Though all the parts of his ear are functioning because the nerves are damaged they are not sending signals to the brain so his brain doesn't register that sound is there. Of course we were the 2% that didn't pass the hearing test and the 1 in 10,000 that is affected by the antibiotic.

Once we discovered that this was not just a fluke we were sent to see a pediatric hearing specialist to see what we could do about helping him. She retested his ear to see exactly at what levels he was hearing. Ears are really complicated and I'm still learning myself but I'll give you a crash course on how it works.

Hearing test results are charted on an audiogram which measures both volume and pitch. Below is an illustrated version that kind of gives you an idea of where everyday sounds would be charted.

Weston's right ear shows a pretty flat horizontal line right on the border of severe and profound hearing loss ( around 100 dB). Meaning when he is about 50 ft away from the sound he can hear a truck, lawn mower, chain saw, motorcycle. airplane, siren, jack hammer, band, and firecrackers. Just like vision decreases overtime hearing also decreases over time. It is expected that Weston's ear will only get worse and not better. Our pediatric specialist suggested we fit him with an aid as soon as possible in order to keep the nerves working and slow down the deterioration process. So when he was 2 months old he got his first hearing aid. 

That brings us to a discussion on hearing aids. While hearing aids are great tools they do not restore perfect hearing to the ear. Hearing aids as a general rule only restore up to half of what is lost. So with his hearing aid Weston is able to hear around 50dB. As you can see in the chart that is right around where speech becomes audible. So even with his hearing aid Weston will struggle to understand conversation from his right side. The other thing that people don't realize about hearing aids is they are extremely annoying, especially in young kids. Hearing aids work like a microphone. So if Weston lays on it or puts his ear right up to something it will give feedback just like a squeaky microphone. It's also tricky to take it in and out for naps, baths, and bedtime. And because they run on batteries it will be just your luck that you forget an extra when your out for the day or on vacation and the battery dies. Also, they aren't water proof and keeping it out of a six month old's mouth is quite the challenge!!!

Ideally Weston will benefit from the hearing aid and enjoy using both of his ears. However, many people who have perfect hearing in one ear say that the artificial noise from the hearing aid is distracting and choose to just adapt to their one ear. Having hearing only in one ear can cause balance and spacial issues (which we have already started to see in Weston). Weston is a little behind developmentally because he can't balance. So he's not sitting up, crawling, rolling over, etc. He also gets really confused when he hears loud sound. When sound is made he almost always turns towards his left and continues to turn in that direction until he has located the sound. 

That being said Weston also has extra abilities and strengths. His eyes (in compensation from his ears) are extremely alert, open, and focused. He recognizes even just the slightest emotion from facial expression. He can mimic facial expressions and has a never ending plethora on hilarious expressions. He is extremely focused. He doesn't get easily distracted by sound so as long as whatever he is looking at is visually stimulating he will stare uninterrupted for hours. He also sleeps really well. We live right on the railroad tracks and even though a train rolls through our backyard in the middle of nap time Weston sleeps on. 

Right now we are trying to keep his nerves active in an effort to save his hearing by using his hearing aid. People often ask about sign. While he should be able to carry on an intimate conversation normally, group settings will be a challenge. So I am learning sign language so I can more easily communicate with him in these types of settings. 

While his ears have been somewhat of a challenge they have also been a blessing. I'm learning a skill that is blessing my life immensely that I would have never learned otherwise. Weston will also be blessed with challenges that will build his character. People often have a lot of questions so feel free to ask anything!!

If you want to read more this is a pretty good site. http://www.healthyhearing.com/content/faqs/Hearing-loss/Test/41775-Degrees-of-hearing-loss