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.
Sunday, October 27, 2013
Tuesday, October 1, 2013
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!!
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!!
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