Yesterday I (with the help of my mom) took the boys to their 6 week hearing aid check up. At this appt. the audiologist did some sound field tests and it appears that their hearing is a bit worse than the tests done previously....by about 40 db. Xander is 50/60 db (left ear is worse). Braxton is 45/50 db. With their hearing aids, they are hearing at about 25 db. Normal hearing is about 0-25.
The boys did just have a cold, so that might have played a role in their testing. But because they havn't really created any words yet, I am pretty certain they aren't hearing well. They will say, "buh" for ball. Or "bu" for book. That's a start. It's typical with hard of hearing kids to omit the ending or beginning sounds of words.
The PIP class they are in at CSDR has been awesome. The boys are thriving and doing great. They are showing a real interest in learning through ASL; fully engaged during story time, etc. I love seeing it. I am finally at the point where I can just drop them off, I don't have to sit with them. My little boys are growing up. ;)
Saturday, September 17, 2011
Thursday, August 18, 2011
A letter to my birthday boys
Dear Braxton and Xander,
Two years ago, today, I met you through a glass. You were both soo very tiny, so fragile, fighting to take a breathe. Your eyes were fused shut, your skin was paper thin, heat lamps over your bed, your lungs didn't work, you had a hole near your heart, a big tube down your throat, wires in your belly button, machines all around you, you were pumped with medicine to keep your heart going, poked hourly with iv's and needles. You little bodies have been zapped with more radiation in the first few weeks of life than I have had in my lifetime.
Your friends parents will tell them stories about the first time they crawled or the first time they walked. You will hear more about the first time I got to lay a finger on you (literally a finger)....you were already days old. or hold you....you were already a month old. I will tell you about the first time I heard you cry...you were already about 2 months old. I will tell you about the first time you drank milk/had a bottle....you were already 3 months old. Our journey has been unlike any other. I will definitely talk about the first time you got to come home....almost 5 months after you were born. The milestones you have made have made me the proudest, happiest mom in the world. You both continue to thrive and make me so proud.
You boys have taught me the importance of trusting God and through you, I have learned even more that prayer is for real and so powerful. I have learned that without God this journey could have and WOULD have looked very different. You boys are a walking testimony of what God can do when we ask and believe. I pray that God continues to use you in big ways.
August 18, 2009 I met two very fragile little boys who were barely alive. Today I have the privledge of seeing two strong, thriving, healthy, smart, fun loving, sweet little boys that I love so much!
Happy Birthday Braxton and Xander!
Love always,
"momma"
Two years ago, today, I met you through a glass. You were both soo very tiny, so fragile, fighting to take a breathe. Your eyes were fused shut, your skin was paper thin, heat lamps over your bed, your lungs didn't work, you had a hole near your heart, a big tube down your throat, wires in your belly button, machines all around you, you were pumped with medicine to keep your heart going, poked hourly with iv's and needles. You little bodies have been zapped with more radiation in the first few weeks of life than I have had in my lifetime.
Your friends parents will tell them stories about the first time they crawled or the first time they walked. You will hear more about the first time I got to lay a finger on you (literally a finger)....you were already days old. or hold you....you were already a month old. I will tell you about the first time I heard you cry...you were already about 2 months old. I will tell you about the first time you drank milk/had a bottle....you were already 3 months old. Our journey has been unlike any other. I will definitely talk about the first time you got to come home....almost 5 months after you were born. The milestones you have made have made me the proudest, happiest mom in the world. You both continue to thrive and make me so proud.
You boys have taught me the importance of trusting God and through you, I have learned even more that prayer is for real and so powerful. I have learned that without God this journey could have and WOULD have looked very different. You boys are a walking testimony of what God can do when we ask and believe. I pray that God continues to use you in big ways.
August 18, 2009 I met two very fragile little boys who were barely alive. Today I have the privledge of seeing two strong, thriving, healthy, smart, fun loving, sweet little boys that I love so much!
Happy Birthday Braxton and Xander!
Love always,
"momma"
Thursday, August 11, 2011
A Baby Story
It's crazy to me, to think that before the twins I loved watching the TLC shows "Baby story, " "Bring home Baby, " etc. All the new mommy/pregnancy shows were entertaining to me. Even brought tears (happy tears) to my eyes.
After the twins, is it not only hard to watch those shows, but to even have a pregnancy convo with a new mommy, or even talk story about pregnancies is difficult. I understand this is "normal"....but TWO YEARS later!?
My boys birthday is around the corner. The little guys will be TWO! It's blowing my mind....so much has happened in these last two years, making time move so quickly. But at the same time, there's parts of this journey that is moving SO incredibly, painfully slow. Like the grieving/healing from the traumatic pregnancy/birthing experience.
I think about it often....I think about how I got robbed from really feeling my boys play and fight inside me. I will never feel another baby inside of me (unless another miracle happens), so to "go out like that" is paralyzing really.
It's so easy to stay in maintenance mode....surviving the everyday antics of raising three boys, taking care of a house, a husband, etc., that you don't leave room to deal with hurt, sorrow, despair, bitterness, etc that's stored up in your heart/mind. With every week or month that passes that you haven't dealt with the junk in your heart, it's cause for later disappointment and a lifetime of struggle. I'm not really about that.... or at least that's not my goal.
I don't write this for sympathy...i just realize I haven't been true to myself lately. There's a lot stored up in this heart of mine. A lot! And if you are like me....when birthdays or holidays roll around, that junk starts trickling out. I figure, for my families sake and my friends around me, I better start dealing with some stuff before it gets ugly.
So, here's to.....transparency, vulnerability, and healing.
After the twins, is it not only hard to watch those shows, but to even have a pregnancy convo with a new mommy, or even talk story about pregnancies is difficult. I understand this is "normal"....but TWO YEARS later!?
My boys birthday is around the corner. The little guys will be TWO! It's blowing my mind....so much has happened in these last two years, making time move so quickly. But at the same time, there's parts of this journey that is moving SO incredibly, painfully slow. Like the grieving/healing from the traumatic pregnancy/birthing experience.
I think about it often....I think about how I got robbed from really feeling my boys play and fight inside me. I will never feel another baby inside of me (unless another miracle happens), so to "go out like that" is paralyzing really.
It's so easy to stay in maintenance mode....surviving the everyday antics of raising three boys, taking care of a house, a husband, etc., that you don't leave room to deal with hurt, sorrow, despair, bitterness, etc that's stored up in your heart/mind. With every week or month that passes that you haven't dealt with the junk in your heart, it's cause for later disappointment and a lifetime of struggle. I'm not really about that.... or at least that's not my goal.
I don't write this for sympathy...i just realize I haven't been true to myself lately. There's a lot stored up in this heart of mine. A lot! And if you are like me....when birthdays or holidays roll around, that junk starts trickling out. I figure, for my families sake and my friends around me, I better start dealing with some stuff before it gets ugly.
So, here's to.....transparency, vulnerability, and healing.
Thursday, August 4, 2011
the latest
I realize I haven't given you the latest on what's happening in the Carmona house....Allow me to briefly update you.
Caden:
We are finally spending a lot of energy potty training, since he will start preschool at the end of the month. He is all registered to go to the local private preschool near our home. For months now we "dabbled" with the whole potty training thing. But since he MUST be trained for school we are doing mostly underwear. he's doing pretty good considering all the distractions he (and I) have.
He will get hearing aids soon I hope...his speech production seems to be getting more muffled. Doctor checked him out this week and his ears look good. I thought perhaps it was fluid build up from swimming. I think the aids will help him tremendously.
Braxton:
Mr. braxton is becoming more and more independent. He wants to feed himself, walk by himself, etc. etc. He is progressing well, developmentally. He is still about 3 months or so behind his brother, but the gap is slowly closing.
He now signs
*bath
*hi/bye
*more
*mom/dad
*finish
*plane
I hear him voice "mama" too :)
He uses his leg braces still....I need to be sure to put them on him the moment he gets up--but who wants to wear shoes all the time. Sucks, but if it's going to help him stop toe walking then so be it. I'm starting to think there's more going on. I'm thinking there something going on with his hip, because he will often hold his hip when he walks. We are STILL waiting to see the physical therapist....with some health insurance changes, things have been a bit in shambles. Hoping by the end of next week we can get it all figured out.
Xander:
Both xander and braxton are very stubborn....hard headed little boys. This is always a bad thing....i think it has helped xander learn sign a lot quicker. he is determined to get what he wants and we try not to give in unless he signs it. Before (2 days ago before) he would scream and yank on us to pick him up. now he quietly points up and looks at us. It's cute...and helps with the noise pollution ;) We are working on "up please". He knows tons of signs...however only does 1/2 word utterances. He and Braxton will be going to CSDR again this fall to the DHH parent infant program. I know they will make huge strides in language this year. Xander, too, says, "mama" at times.
Xander has a hernia in his private area...so we are going to a specialist to get that checked out. HE often pushes down there and one doctor said "its just a guy thing". we could tell he was uncomfortable....and it turns out it wasn't "just a guy thing!"
In a couple weeks the twins have an appt at the high risk clinic at Loma Linda, where they will have more extensive developmental/physical testing done. They turn 2 AUG. 18th!! Crazy... at age 2 a lot of things change. They don't adjust their age anymore...the gaps that are present are now looked at differently. Not just a "preemie" thing. So we'll see what they have to say. Of course I am already thinking about this appt, but trying to remember that what ever they have to say is not written in blood. They've been wrong before! :)
Mom:
I will be teaching another ASL class this fall at CBU. I'm looking fwd to it, as it gives me a little adult time...a sense of balance from the everyday tasks of being a stay at home mom. Which....as some of you know, can be daunting at times.
Dad:
Phil continues to work hard at his business, RISE interpreting. I'm very proud of him--it has to be a hard task being a dad/husband; trying to balance work, time with wifey, kids, etc. He's doing it... One of my favorite sights is seeing all three boys tackle Phil to the ground and hearing all 4 of them laughing out loud.
till next time....
Caden:
We are finally spending a lot of energy potty training, since he will start preschool at the end of the month. He is all registered to go to the local private preschool near our home. For months now we "dabbled" with the whole potty training thing. But since he MUST be trained for school we are doing mostly underwear. he's doing pretty good considering all the distractions he (and I) have.
He will get hearing aids soon I hope...his speech production seems to be getting more muffled. Doctor checked him out this week and his ears look good. I thought perhaps it was fluid build up from swimming. I think the aids will help him tremendously.
Braxton:
Mr. braxton is becoming more and more independent. He wants to feed himself, walk by himself, etc. etc. He is progressing well, developmentally. He is still about 3 months or so behind his brother, but the gap is slowly closing.
He now signs
*bath
*hi/bye
*more
*mom/dad
*finish
*plane
I hear him voice "mama" too :)
He uses his leg braces still....I need to be sure to put them on him the moment he gets up--but who wants to wear shoes all the time. Sucks, but if it's going to help him stop toe walking then so be it. I'm starting to think there's more going on. I'm thinking there something going on with his hip, because he will often hold his hip when he walks. We are STILL waiting to see the physical therapist....with some health insurance changes, things have been a bit in shambles. Hoping by the end of next week we can get it all figured out.
Xander:
Both xander and braxton are very stubborn....hard headed little boys. This is always a bad thing....i think it has helped xander learn sign a lot quicker. he is determined to get what he wants and we try not to give in unless he signs it. Before (2 days ago before) he would scream and yank on us to pick him up. now he quietly points up and looks at us. It's cute...and helps with the noise pollution ;) We are working on "up please". He knows tons of signs...however only does 1/2 word utterances. He and Braxton will be going to CSDR again this fall to the DHH parent infant program. I know they will make huge strides in language this year. Xander, too, says, "mama" at times.
Xander has a hernia in his private area...so we are going to a specialist to get that checked out. HE often pushes down there and one doctor said "its just a guy thing". we could tell he was uncomfortable....and it turns out it wasn't "just a guy thing!"
In a couple weeks the twins have an appt at the high risk clinic at Loma Linda, where they will have more extensive developmental/physical testing done. They turn 2 AUG. 18th!! Crazy... at age 2 a lot of things change. They don't adjust their age anymore...the gaps that are present are now looked at differently. Not just a "preemie" thing. So we'll see what they have to say. Of course I am already thinking about this appt, but trying to remember that what ever they have to say is not written in blood. They've been wrong before! :)
Mom:
I will be teaching another ASL class this fall at CBU. I'm looking fwd to it, as it gives me a little adult time...a sense of balance from the everyday tasks of being a stay at home mom. Which....as some of you know, can be daunting at times.
Dad:
Phil continues to work hard at his business, RISE interpreting. I'm very proud of him--it has to be a hard task being a dad/husband; trying to balance work, time with wifey, kids, etc. He's doing it... One of my favorite sights is seeing all three boys tackle Phil to the ground and hearing all 4 of them laughing out loud.
till next time....
Friday, July 29, 2011
Santa Ana Zoo
My mom and I took the boys to a small zoo yesterday....I'm glad we chose this one as our first attempt vs. going to the famous San Diego zoo. The boys did well, but we only lasted 2.5 hours. They wanted to walk, grab, run, look, etc. We managed to arrive happy and leave happy. I think we can say mission accomplished.
A few pics from the day's fun....
signing "all done" :)
just arriving....Let the fun begin
On a fake jeep
Xander loved the goats...braxton did NOT
Xander was scared at first but cried when we had to get off...
Thank you mom for a fun day and ALL your help!
Oregon: Cremation Vacation
Yes..I said "cremation vacation". This was the token phrase of the week, as we all flew to the Oregon Coast to say our last good byes to my grandma. Her favorite beach was cannon beach...she loved Haystack rock. So what better place to gather for a memorial. It was perfect.
This was also the first trip the 5 of us went on. PHil and I, along with my mom, step dad and step brother trucked around the airport with 3 toddlers, 3 car seats, 5 carry ons, a double stroller, and more. (imagine getting all that through security....) It was intense...to say the least. Getting on the plane, I thought was the hard part; that is until we were IN the plane. It was a lot of work. But well worth it.... Spending a week with my family (32 of us) was awesome! The boys ate it up, as they got tons of attention.
Below are a few pictures to depict the adventure:
Braxton and GG waiting at the airport
More waiting at the airport...
Our condo in Seaside, Oregon (he has a little michael jackson in him)
Xander :)
The condo wasn't baby proofed...this was our attempt. They were up to something before I caught them :)
Holding baby Gus for the first time...my boys LOVE babies
Uncle Andrew walking Xander around the airport. He was awesome help!
Grandma d (my aunt) helping my mom give the boys a bath....what a task.
Braxton and Xander....can't tell me they are not Identical twins!
Caden and Agustus again...he's in love.
Cannon beach...Haystack rock is behind them...
Just hanging out--figuring out the days plans.
Brotherly love on the beach
Notice my hand.... funny.
Braxton and i...wait...is that braxton. Yes, confirmed by looking at another pic. :)
Caden Thomas
What started out fun, doesn't look like it ended that way.....according to Xander's face :)
This was also the first trip the 5 of us went on. PHil and I, along with my mom, step dad and step brother trucked around the airport with 3 toddlers, 3 car seats, 5 carry ons, a double stroller, and more. (imagine getting all that through security....) It was intense...to say the least. Getting on the plane, I thought was the hard part; that is until we were IN the plane. It was a lot of work. But well worth it.... Spending a week with my family (32 of us) was awesome! The boys ate it up, as they got tons of attention.
Below are a few pictures to depict the adventure:
Braxton and GG waiting at the airport
More waiting at the airport...
Our condo in Seaside, Oregon (he has a little michael jackson in him)
Xander :)
The condo wasn't baby proofed...this was our attempt. They were up to something before I caught them :)
Holding baby Gus for the first time...my boys LOVE babies
Uncle Andrew walking Xander around the airport. He was awesome help!
Grandma d (my aunt) helping my mom give the boys a bath....what a task.
Braxton and Xander....can't tell me they are not Identical twins!
Caden and Agustus again...he's in love.
Cannon beach...Haystack rock is behind them...
Just hanging out--figuring out the days plans.
Brotherly love on the beach
Notice my hand.... funny.
Braxton and i...wait...is that braxton. Yes, confirmed by looking at another pic. :)
Caden Thomas
What started out fun, doesn't look like it ended that way.....according to Xander's face :)
Can't wait to reunite again next summer when my cousin gets married.... :)
Thursday, June 23, 2011
hearing aids
Finally the twins will get fitted for their hearing aids! Their appt is on July 1st. Unfortunately, after that we still have to wait a couple more weeks to actually get them. But....we are almost there! I can't wait. Then the next challenge will be to keep them on. Any suggestions is welcomed.
Just had their review IFSP meeting this morning and they will continue to go to CSDR in their PIP program.
Caden has not received any info on when he will be getting his aids. I have more phone calls to make to follow up on this one. But he will be having an IEP meeting to receive speech services in the fall, in order to "fine tune" some of his speech sounds. His language is not an issue....so he doesn't need a special day class. He will be attending a preschool near our home in the fall, along with other hearing kids. Hopefully he will have his hearing aids by then. Because I do notice myself speaking louder or repeating myself when there is any kind of background noise.
Making progress.... :o)
Just had their review IFSP meeting this morning and they will continue to go to CSDR in their PIP program.
Caden has not received any info on when he will be getting his aids. I have more phone calls to make to follow up on this one. But he will be having an IEP meeting to receive speech services in the fall, in order to "fine tune" some of his speech sounds. His language is not an issue....so he doesn't need a special day class. He will be attending a preschool near our home in the fall, along with other hearing kids. Hopefully he will have his hearing aids by then. Because I do notice myself speaking louder or repeating myself when there is any kind of background noise.
Making progress.... :o)
Wednesday, June 15, 2011
Braces
no...not the kind that go on your teeth. The kind that help you walk.
Oh...HI. It's been awhile. 2 months to be exact. It's not like I haven't had a lot to share. My heart is actually pretty full--over flowing to be completely honest. Drowning me in some ways. Buuuut today...I am here to talk about the boys.
Braxton. This little guy has shown SUCH determination. The kid who would refuse to stand and only cruise the couch or any other piece of furniture he could get his hands on, is now walking!! i would now say he is a walker, only because when he walks and he falls down (cuz he does. A LOT), he chooses to get back on his feet vs. take the easy route and crawl. I like to thank Xander (well and OF COURSE God for answering so many prayers in this area) for pushing his twin brother to keep up. Xander is FAST--They are each other's shadow, so Braxton is forced to keep up. He gets so frustrated that he's not as fast, but he is doing his best.
He still "toe walks", which is not good. Mostly his right leg/foot. We've been waiting a month to get back into Physical therapy. Insurance hold ups. Ugghh... very frustrating. But yesterday Braxton got fitted for his braces. Yes, they look just like the ones the infamous Forest wore. Forest Gump that is. The tech. that was fitting him was almost certain the braces would correct his strides to make him walk "normal". This guy has been doing this for 30 years. I have some trust in his opinion/observations. Braxton should have them in two weeks. I know with his courage and determination he will be successful.
Xander. OH xander....my Tasmanian devil. He's my very own Energizer bunny.
He isn't speaking yet (besides using his unique jargon), but is signing between 20-30 words. He is definitely a visual learner, completely benefiting from ASL. It should only be days and he gets to get his hearing aids. I can't wait...his world will change for sure. I'm sure he will still prefer ASL to understand the world around him. At least for a while. We'll see which direction he takes--I predict him to be a kid that can code switch with ease; communicate in ASL and quickly use English when necessary. Xander has this charm about him--and knows exactly when to let it shine. After he smacks his brother in the face, or takes a toy and runs (literally runs) away, as I'm trying to discipline him, that smile...it stops me in my tracks. He's got skills...
Caden. I can't believe he will be 3 in October.... we are currently working on potty training. Even though I'm not spending all my energy teaching him the potty basics, he is doing quite well. (just a min ago he told me he needed to go pee pee). I'm proud of him. the goal is to be completely trained by August when he starts Preschool. He will go three days a week. We are still waiting for hearing aids. It's a longer process for him--I guess since he wasn't already in the system. He would probably do "fine" without them. However his speech is getting more mumbled...not crisp. He isn't able to articulate his words like I think he should. He will have a full assessment by the district and we'll see what the speech therapist thinks as far as speech needs/goals. His IFSP assessment shows that he is about a year a head in language, even with the hearing loss. ALl this to say, he will do fine outside of a signing environment. The twins will continue at CSDR in the fall though.
There you have it. The short (yes this was as short as I could make it) update on the three cutest carmona boys.
As for the rest.
TBC...
Oh...HI. It's been awhile. 2 months to be exact. It's not like I haven't had a lot to share. My heart is actually pretty full--over flowing to be completely honest. Drowning me in some ways. Buuuut today...I am here to talk about the boys.
Braxton. This little guy has shown SUCH determination. The kid who would refuse to stand and only cruise the couch or any other piece of furniture he could get his hands on, is now walking!! i would now say he is a walker, only because when he walks and he falls down (cuz he does. A LOT), he chooses to get back on his feet vs. take the easy route and crawl. I like to thank Xander (well and OF COURSE God for answering so many prayers in this area) for pushing his twin brother to keep up. Xander is FAST--They are each other's shadow, so Braxton is forced to keep up. He gets so frustrated that he's not as fast, but he is doing his best.
He still "toe walks", which is not good. Mostly his right leg/foot. We've been waiting a month to get back into Physical therapy. Insurance hold ups. Ugghh... very frustrating. But yesterday Braxton got fitted for his braces. Yes, they look just like the ones the infamous Forest wore. Forest Gump that is. The tech. that was fitting him was almost certain the braces would correct his strides to make him walk "normal". This guy has been doing this for 30 years. I have some trust in his opinion/observations. Braxton should have them in two weeks. I know with his courage and determination he will be successful.
Xander. OH xander....my Tasmanian devil. He's my very own Energizer bunny.
He isn't speaking yet (besides using his unique jargon), but is signing between 20-30 words. He is definitely a visual learner, completely benefiting from ASL. It should only be days and he gets to get his hearing aids. I can't wait...his world will change for sure. I'm sure he will still prefer ASL to understand the world around him. At least for a while. We'll see which direction he takes--I predict him to be a kid that can code switch with ease; communicate in ASL and quickly use English when necessary. Xander has this charm about him--and knows exactly when to let it shine. After he smacks his brother in the face, or takes a toy and runs (literally runs) away, as I'm trying to discipline him, that smile...it stops me in my tracks. He's got skills...
Caden. I can't believe he will be 3 in October.... we are currently working on potty training. Even though I'm not spending all my energy teaching him the potty basics, he is doing quite well. (just a min ago he told me he needed to go pee pee). I'm proud of him. the goal is to be completely trained by August when he starts Preschool. He will go three days a week. We are still waiting for hearing aids. It's a longer process for him--I guess since he wasn't already in the system. He would probably do "fine" without them. However his speech is getting more mumbled...not crisp. He isn't able to articulate his words like I think he should. He will have a full assessment by the district and we'll see what the speech therapist thinks as far as speech needs/goals. His IFSP assessment shows that he is about a year a head in language, even with the hearing loss. ALl this to say, he will do fine outside of a signing environment. The twins will continue at CSDR in the fall though.
There you have it. The short (yes this was as short as I could make it) update on the three cutest carmona boys.
As for the rest.
TBC...
Tuesday, April 12, 2011
walking
IF you haven't heard....Braxton has taken a total of 7 steps independently. This is really really good. But why am I still frustrated, disappointed, and discouraged by it all....? I've been struggling a lot lately--unspoken of course. So I'm taking a huge leap and about to vomit out what that struggle is. In exchange, I ask for your prayers.
almost 20 months ago (close to TWO years!) my twin boys were born weighing a pound and a half. I have NEVER denied the miracle that happened then and continues to happen. I give God all the praise for the success of their journey. At 6 weeks old, we were asked to "discontinue life support." The doctors all told us that they would be close to what we know as a vegetable. If you know my boys, you know that THAT is not what God had planned.
Xander is quickly closing the gap. He is probably around a 17 month old in gross and fine motor skills. Speech and language is still that of a 4 or 5 month old...but hoping that changes in the next few weeks when we get those hearing aids. cognitively, though, he is a smart little boy. Signing and really trying to express himself.
My time and energy...my sinful worry, is all focused to Braxton. This little boy has made amazing strides. He has always been about 3 months behind xander. He sat independently, later, he crawled later, and now he's walking later. However, his walking strides are not smooth. He has stiff ankles, legs, making it more challenging for him to do this with ease. IF it were up to him, he would choose to crawl or cruise the furniture his whole life. He CAN take steps though...because we've seen it. The physical therapist is ordering ankle braces to help give him a little more support.
On one hand I am SO incredibly thankful that my baby is NOT wheelchair bound, can eat and drink on his own, breathe on his own, cruise around, babble, laugh, engage wiht family and friends, cry, etc. But on the other (dreaded) hand, I see my son as different....I see his frustrations. I see he is left out becuase his brothers are faster and quicker (in all areas: gross,fine,cognitive). It breaks my heart. I start to question everything. Is this a picture of what his school age years will look like? Will he be fighting to "fit in" his whole life? Will he be physically able to be on his brothers sports teams or will he be on the side line cheering with a fake smile? Will xander be in a DHH classroom, Braxton at a different school, and caden at a different school?
I think it's easy and normal to think all these things....to worry about your children. However, I am convicted daily when this happens. My worry is not productive...it's also saying that I am not trusting that God got us this far, He has no plans of dropping us off now. I should know by now that He is not going to rip me off...but like I said...long story short. I'm struggling to trust HIM. i ask for your prayers for braxton, that he can gain the confidence needed to walk (i think this is also part of the reason why he isnt walking). I ask that you pray for his muscles...that they continue to loosen so his steps are fluid. (a year ago he couldn't even touch his toes to his mouth. now he can!) We go see the eye doctor in 2 weeks...his right eye still goes in and I know this can't make it easy to stay firm on your feet either. And lastly, I pray that I can remain faithful and trust that God's got my back. He won't let me down.... And if braxton will have a limp type walk, I pray that God will prepare me for that-- soften my heart to know that "normal" is different for everyone. I know these boys are here for a reason, and I KNOW God will use them for His glory. (he already has)... I still want what I want... when I want. ANother struggle..another blog. a whole other story. ;)
Thank you in advance for your prayers!
almost 20 months ago (close to TWO years!) my twin boys were born weighing a pound and a half. I have NEVER denied the miracle that happened then and continues to happen. I give God all the praise for the success of their journey. At 6 weeks old, we were asked to "discontinue life support." The doctors all told us that they would be close to what we know as a vegetable. If you know my boys, you know that THAT is not what God had planned.
Xander is quickly closing the gap. He is probably around a 17 month old in gross and fine motor skills. Speech and language is still that of a 4 or 5 month old...but hoping that changes in the next few weeks when we get those hearing aids. cognitively, though, he is a smart little boy. Signing and really trying to express himself.
My time and energy...my sinful worry, is all focused to Braxton. This little boy has made amazing strides. He has always been about 3 months behind xander. He sat independently, later, he crawled later, and now he's walking later. However, his walking strides are not smooth. He has stiff ankles, legs, making it more challenging for him to do this with ease. IF it were up to him, he would choose to crawl or cruise the furniture his whole life. He CAN take steps though...because we've seen it. The physical therapist is ordering ankle braces to help give him a little more support.
On one hand I am SO incredibly thankful that my baby is NOT wheelchair bound, can eat and drink on his own, breathe on his own, cruise around, babble, laugh, engage wiht family and friends, cry, etc. But on the other (dreaded) hand, I see my son as different....I see his frustrations. I see he is left out becuase his brothers are faster and quicker (in all areas: gross,fine,cognitive). It breaks my heart. I start to question everything. Is this a picture of what his school age years will look like? Will he be fighting to "fit in" his whole life? Will he be physically able to be on his brothers sports teams or will he be on the side line cheering with a fake smile? Will xander be in a DHH classroom, Braxton at a different school, and caden at a different school?
I think it's easy and normal to think all these things....to worry about your children. However, I am convicted daily when this happens. My worry is not productive...it's also saying that I am not trusting that God got us this far, He has no plans of dropping us off now. I should know by now that He is not going to rip me off...but like I said...long story short. I'm struggling to trust HIM. i ask for your prayers for braxton, that he can gain the confidence needed to walk (i think this is also part of the reason why he isnt walking). I ask that you pray for his muscles...that they continue to loosen so his steps are fluid. (a year ago he couldn't even touch his toes to his mouth. now he can!) We go see the eye doctor in 2 weeks...his right eye still goes in and I know this can't make it easy to stay firm on your feet either. And lastly, I pray that I can remain faithful and trust that God's got my back. He won't let me down.... And if braxton will have a limp type walk, I pray that God will prepare me for that-- soften my heart to know that "normal" is different for everyone. I know these boys are here for a reason, and I KNOW God will use them for His glory. (he already has)... I still want what I want... when I want. ANother struggle..another blog. a whole other story. ;)
Thank you in advance for your prayers!
Friday, March 11, 2011
God had a plan
Throughout my adult life and more specifically, this past year, I find myself seeing God's hand on my life. I notice His provision, His protection and His love. That's not to say He wasn't apart of that when I was younger....I just didn't sit and reflect on it. God was already working, marking the path to my future, starting when I was just 7 years old (well, long before that really).
At 7 years old I met a girl, who later became "my sister". At the time, I didn't really know she was "different"; I didn't quite understand that she used her hands to talk because she couldn't hear. We were just two little girls doing what girls do best, Have fun. Before I knew it, we were no longer playing tether-ball at school, and having lunch together, but we were having sleep overs and play dates.
Jumping ahead...As I was applying for college and still not quite sure what I wanted to do with my life, I knew one thing was for sure. God gave me a gift to sign (ASL), and I loved working with children. Soooo, I decided to go into Deaf Education. Instead of play dates and sleep overs, my friend and I became roomates (I guess it is a form of a sleep over) :) Without my first introduction to the language and culture at 7 years old, who knows what career I would have led.
fast forward... While going to college I attended a church that had a pretty big Deaf population. On occasion I would sit with my Deaf friends. There....I met my husband. He was a fluent signer as well, interpreting the church service every Sunday.
Moving ahead 3 years... We got married and had three kids. I don't have to get into the whole preemie story, but its important to remind you that one of the risks of having a premature baby is deafness. We giggled when the doctors told us that. To us-- that wasn't a huge risk.
YESTERDAY, we took the boys to the audiologist at Loma Linda Hospital. This was their 3rd visit/audiological exam. We knew that they were showing signs of hearing loss; The tests themselves were showing a mild/moderate loss, and their language is very delayed (that of a 4 month old). Yesterday it was confirmed that Xander indeed needs hearing aids. It was shocking to find out, though, that his loss is more on a scale of moderate/severe (about 60 db across the board. 20db is normal). Braxton's test is next week, but pretty sure it's similar.
Caden, also had a hearing test yesterday. I went in thinking that his loss would have been the kind of loss that is easily fixed with tubes (conductive loss). Well that's what the ENT suggested originally. When in fact, after the exam, he has a true moderate sensorineural hearing loss (nerve/genetic). The doctor was adamant about getting him hearing aids ASAP. He does not need tubes after all. Tubes would do nothing for him. He was VERY impressed with his ability to complete the test and with his language skills. They did an exam that the do on 3 to 3.5 year olds. Being the first child, we were able to sign more to him and read a whole lot more. This has tremendously helped his development in speech and language.
Today.... I am SOOO thankful that God placed my friend Kelly in my life 25 years ago! I was driving home from the store yesterday and I had tears in my eyes as I was reflecting on how God has been preparing us to be parents of three (NOT ONE), but three hard of hearing children. There was a moment (literally just a moment) of sadness. Then I began to smile...God has been in this since day 1. As we start the next journey of getting hear aids and working through educational decisions, etc. I am confident that God will also be present--leading the WAY.
So this Blog entry is to Thank GOD...and to THANK Kelly Baldwin for being such a faithful friend. Both, opening up so many doors of opportunity for me (and my family).
At 7 years old I met a girl, who later became "my sister". At the time, I didn't really know she was "different"; I didn't quite understand that she used her hands to talk because she couldn't hear. We were just two little girls doing what girls do best, Have fun. Before I knew it, we were no longer playing tether-ball at school, and having lunch together, but we were having sleep overs and play dates.
Jumping ahead...As I was applying for college and still not quite sure what I wanted to do with my life, I knew one thing was for sure. God gave me a gift to sign (ASL), and I loved working with children. Soooo, I decided to go into Deaf Education. Instead of play dates and sleep overs, my friend and I became roomates (I guess it is a form of a sleep over) :) Without my first introduction to the language and culture at 7 years old, who knows what career I would have led.
fast forward... While going to college I attended a church that had a pretty big Deaf population. On occasion I would sit with my Deaf friends. There....I met my husband. He was a fluent signer as well, interpreting the church service every Sunday.
Moving ahead 3 years... We got married and had three kids. I don't have to get into the whole preemie story, but its important to remind you that one of the risks of having a premature baby is deafness. We giggled when the doctors told us that. To us-- that wasn't a huge risk.
YESTERDAY, we took the boys to the audiologist at Loma Linda Hospital. This was their 3rd visit/audiological exam. We knew that they were showing signs of hearing loss; The tests themselves were showing a mild/moderate loss, and their language is very delayed (that of a 4 month old). Yesterday it was confirmed that Xander indeed needs hearing aids. It was shocking to find out, though, that his loss is more on a scale of moderate/severe (about 60 db across the board. 20db is normal). Braxton's test is next week, but pretty sure it's similar.
Caden, also had a hearing test yesterday. I went in thinking that his loss would have been the kind of loss that is easily fixed with tubes (conductive loss). Well that's what the ENT suggested originally. When in fact, after the exam, he has a true moderate sensorineural hearing loss (nerve/genetic). The doctor was adamant about getting him hearing aids ASAP. He does not need tubes after all. Tubes would do nothing for him. He was VERY impressed with his ability to complete the test and with his language skills. They did an exam that the do on 3 to 3.5 year olds. Being the first child, we were able to sign more to him and read a whole lot more. This has tremendously helped his development in speech and language.
Today.... I am SOOO thankful that God placed my friend Kelly in my life 25 years ago! I was driving home from the store yesterday and I had tears in my eyes as I was reflecting on how God has been preparing us to be parents of three (NOT ONE), but three hard of hearing children. There was a moment (literally just a moment) of sadness. Then I began to smile...God has been in this since day 1. As we start the next journey of getting hear aids and working through educational decisions, etc. I am confident that God will also be present--leading the WAY.
So this Blog entry is to Thank GOD...and to THANK Kelly Baldwin for being such a faithful friend. Both, opening up so many doors of opportunity for me (and my family).
Wednesday, February 2, 2011
SO PROUD
Forgive me, as I'm about to brag....A lot....about my son. :)
Caden has been such an amazing little boy the past few weeks. He has been so sweet to his brothers, using such great manners, really seems he's trying to practice obedience and make him momma and daddy happy. YES....he still has his "I'm 2 and will act like it" moments--
But I wanted to share how proud I am of him. If his brothers get hurt, he will go to them quickly, and kiss their head and say, "its otay." (often not saying the 'k's) If his brothers are crying in the car, he will reach over to touch them and say, "it's otay, we almost ome." When his brothers are fussing during their diaper changes, he will come over and try to distract them for me. (without being asked at times!). When we were at the doctors this week, he was using Please and Thank you a bunch, and spontaneously. The nurse was so impressed she walked back into the room and had to give him a high five and praise him for his sweet manners.
Phil and I have been AMAZED..literally, with caden's ability to throw a base ball(nerf style), dribble a soccer ball, then yesterday we were pitching balls to him, and the kid can HIT! I foresee travel ball in our future. ;) Till then...we will sign him up for soccer (AYSO) in the fall.
Love this little man....more and more everyday! He is such a blessing.
Caden has been such an amazing little boy the past few weeks. He has been so sweet to his brothers, using such great manners, really seems he's trying to practice obedience and make him momma and daddy happy. YES....he still has his "I'm 2 and will act like it" moments--
But I wanted to share how proud I am of him. If his brothers get hurt, he will go to them quickly, and kiss their head and say, "its otay." (often not saying the 'k's) If his brothers are crying in the car, he will reach over to touch them and say, "it's otay, we almost ome." When his brothers are fussing during their diaper changes, he will come over and try to distract them for me. (without being asked at times!). When we were at the doctors this week, he was using Please and Thank you a bunch, and spontaneously. The nurse was so impressed she walked back into the room and had to give him a high five and praise him for his sweet manners.
Phil and I have been AMAZED..literally, with caden's ability to throw a base ball(nerf style), dribble a soccer ball, then yesterday we were pitching balls to him, and the kid can HIT! I foresee travel ball in our future. ;) Till then...we will sign him up for soccer (AYSO) in the fall.
Love this little man....more and more everyday! He is such a blessing.
Caden's ears
As some of you know, caden's hearing test came back "abnormal". He has a mild to moderate hearing loss. Monday I took him to the ENT at Loma Linda. (luckily the insurance allowed us to go out of network to the pediatric specialist, due to the fact the boys also go there).
Caden's ear drums are slightly retracted (sucken in), but no visible fluid. SO he is getting some negative pressure when they test the inner ear. As my pediatrician warned me, the ENT's first suggestion was going to be, "put tubes in his ears". I asked if this was a guarantee that he would hear better, and she said no. Right away I then asked what the second option was and then the third. Second option is get his ears retested at Loma linda, then third option was hearing aids.
At this point, we are waiting for approval to get his hearing re tested at Loma Linda, with the same audiologist that his brothers have. (i really like him). Once we have those results we can make a more informed decision. As of right now, we are not going to do any surgeries. His loss is a mixed conductive/senori neural. This means that the conductive part (inner ear "issues") could be fixed, but then that would still leave him with a nerve hearing loss (thanks to genetics). Hearing aids are probably in his future as well.
If you know caden, you know a boy who talks a lot, and seems to have a wide range of vocabulary. He carries on conversations, and is a quick learner. After the results came back, however, I now see letter sounds that are missing, and notice him wanting the radio, tv, computer turned up, he speaks VERY loudly, and misunderstands me at times. To compensate, I have been using strategies you'd use on anyone with a hearing loss. One, being, look right at him and speak clearly.
Just like his momma...one on one situations and small group settings, you would never know he had an issue with hearing. The audiologist in LA said that you will start to notice the loss when he gets in school... so to prevent that we are taking action now.
Maybe loma linda will re-test him and prove the first test to be completely off. We'll see...
Hoping the referral comes back soon, and we can have this appt this month.
Caden's ear drums are slightly retracted (sucken in), but no visible fluid. SO he is getting some negative pressure when they test the inner ear. As my pediatrician warned me, the ENT's first suggestion was going to be, "put tubes in his ears". I asked if this was a guarantee that he would hear better, and she said no. Right away I then asked what the second option was and then the third. Second option is get his ears retested at Loma linda, then third option was hearing aids.
At this point, we are waiting for approval to get his hearing re tested at Loma Linda, with the same audiologist that his brothers have. (i really like him). Once we have those results we can make a more informed decision. As of right now, we are not going to do any surgeries. His loss is a mixed conductive/senori neural. This means that the conductive part (inner ear "issues") could be fixed, but then that would still leave him with a nerve hearing loss (thanks to genetics). Hearing aids are probably in his future as well.
If you know caden, you know a boy who talks a lot, and seems to have a wide range of vocabulary. He carries on conversations, and is a quick learner. After the results came back, however, I now see letter sounds that are missing, and notice him wanting the radio, tv, computer turned up, he speaks VERY loudly, and misunderstands me at times. To compensate, I have been using strategies you'd use on anyone with a hearing loss. One, being, look right at him and speak clearly.
Just like his momma...one on one situations and small group settings, you would never know he had an issue with hearing. The audiologist in LA said that you will start to notice the loss when he gets in school... so to prevent that we are taking action now.
Maybe loma linda will re-test him and prove the first test to be completely off. We'll see...
Hoping the referral comes back soon, and we can have this appt this month.
John Tracy Clinic (hearing tests)
Yesterday Phil and I took Braxton and Xander to LA, to a pretty famous place: John Tracy Clinic (JTC). It's a facility that educates and gives tons of support to parents of Deaf of Hard of Hearing children. (however they don't use the term "deaf". More on that later).
Per our audiologists suggestion, we went to JTC for a second opinion. I was anxious to get these tests done, because it was a play based test, vs the kind where the boys are sleeping (ABR). This test was suppose to give more accurate results. That is, if the boys cooperated. I'm not saying the visit was a waste....cuz it wasn't. However, the audiologist doesn't feel like she got thresholds (the lowest sound that they boys can hear). Her results actually showed worse hearing than the initial ABR tests taken at Loma LInda. Braxton was restless--very annoyed at the little ear phones he had to put in his ears. Xander did great. He fussed a bit then just sat real still playing wit the toys. He was so involved with the toys, he started to tune out the noises and not react to them. SO we took the toys away and then he seem to have gotten bored with the process of looking at the light up toys that were suppose to be associated with the sounds. (his attention span is SMALL).
SOOO.....now what. The boys will get another ABR, the brain stem test, before they get fitted for hearing aids. Although I trust Loma Linda, and really like the audiologist there, I think we are going to take them to H.E.I ( another famous facility in LA: House Ear Institute). They give the boys meds that knock 'em out in a deep sleep. Loma Linda requires us to starve them, keep them up, and then put them to sleep ourselves when we arrive to the appt. If you can imagine, that is not fun...for anyone. I rather drive to LA.
Hope to know more in a few weeks....Till then we are signing like crazy with them. THey are both signing "more", and xander is almost waving "bye".
Per our audiologists suggestion, we went to JTC for a second opinion. I was anxious to get these tests done, because it was a play based test, vs the kind where the boys are sleeping (ABR). This test was suppose to give more accurate results. That is, if the boys cooperated. I'm not saying the visit was a waste....cuz it wasn't. However, the audiologist doesn't feel like she got thresholds (the lowest sound that they boys can hear). Her results actually showed worse hearing than the initial ABR tests taken at Loma LInda. Braxton was restless--very annoyed at the little ear phones he had to put in his ears. Xander did great. He fussed a bit then just sat real still playing wit the toys. He was so involved with the toys, he started to tune out the noises and not react to them. SO we took the toys away and then he seem to have gotten bored with the process of looking at the light up toys that were suppose to be associated with the sounds. (his attention span is SMALL).
SOOO.....now what. The boys will get another ABR, the brain stem test, before they get fitted for hearing aids. Although I trust Loma Linda, and really like the audiologist there, I think we are going to take them to H.E.I ( another famous facility in LA: House Ear Institute). They give the boys meds that knock 'em out in a deep sleep. Loma Linda requires us to starve them, keep them up, and then put them to sleep ourselves when we arrive to the appt. If you can imagine, that is not fun...for anyone. I rather drive to LA.
Hope to know more in a few weeks....Till then we are signing like crazy with them. THey are both signing "more", and xander is almost waving "bye".
Friday, January 28, 2011
First day of "school"
My boys...all THREE, attended the PIP classroom. (Parent Infant Program is an all signing Early Start preschool) Caden joined, because we weren't staying the whole time. And he did great! The teacher asked multiple times if we were registering him to also be apart of the program. (if you don't already know, caden has been tested as having a hearing loss as well. But further testing is happening on Monday. More on that later).
Here are a couple pictures from our first day. I won't lie....it was overwhelming. The kids are 18 months -2.9 years old. But they seems years older, because of the size difference and their abilities. The second time we went (yesterday), the twins did SO much better. They actually sat during circle time and seem a lot more comfortable. I think the key is a nap and food right before class. We will continue to go Tuesdays and Thursdays. I really think the interaction and exposure to typical developing kids will help them tremendously.
*notice how much smaller the boys look in these pics. The other kids did really well with them though. Xander, especially, was very interested in watching the other kids. I'm excited to see some growth in different areas.
Saturday, January 8, 2011
Parent Infant Program
Braxton and Xander will be attending the early start program at my old job, California School for the Deaf, Riverside (CSDR)! We had our IFSP (a meeting to discuss goals and best placement for the boys) this week. The team decided because of their hearing loss and lack of language at this time, the boys would best fit the Parent Infant Program (PIP). It's a signing environment, but they do have speech goals and will see a speech therapist. I could not be more thrilled! We loved the teacher and the class has 7 other children ranging from 18 months to 2.5 years old.
I only have one concern...GERMS. It is the middle of flu season. They will be around multiple kids and a lot of germy toys. NOt to be paranoid, but I really don't want to go back in the hospital with one of them. I'm weighing the cost....language, socialization vs. the chance of getting real sick. I feel God tugging me and telling me, TRUST ME...PRAY for your little ones and let them grow and develop and experience what this classroom has to offer.
With that said, we will go in on Tuesday for about an hour to see the boys roam and check out the set up of the classroom. Then we will probably start going T/TH for a few weeks, working up to M-Th (8:00-11:00). I will (or my mom will) have to be there until they are 18 months old...then the goal is to drop them off. This will be soo good for them, because they are very (especially xander) attached to mommy.
So..here's the start of another chapter in our book of "life raising preemies"!
I only have one concern...GERMS. It is the middle of flu season. They will be around multiple kids and a lot of germy toys. NOt to be paranoid, but I really don't want to go back in the hospital with one of them. I'm weighing the cost....language, socialization vs. the chance of getting real sick. I feel God tugging me and telling me, TRUST ME...PRAY for your little ones and let them grow and develop and experience what this classroom has to offer.
With that said, we will go in on Tuesday for about an hour to see the boys roam and check out the set up of the classroom. Then we will probably start going T/TH for a few weeks, working up to M-Th (8:00-11:00). I will (or my mom will) have to be there until they are 18 months old...then the goal is to drop them off. This will be soo good for them, because they are very (especially xander) attached to mommy.
So..here's the start of another chapter in our book of "life raising preemies"!
Thursday, January 6, 2011
OVER LOAD
As I have mentioned in the recent past, the twins have had some hearing tests done that have come back abnormal. There is a definite hearing loss, but at this time we don't know the exact amount.
I sort of predicted that the boys would have some issues with hearing....not really giving it much thought. But now that they are 17 months (13 months adjusted) and only babbling mama, I am getting more concerned and starting to find myself on the phone with more specialist, on the Internet looking up more terms, and my mind is going non stop. I think there's a fine line between being a concerned and involved parent, to an overly obsessed control freak. Well...I am currently leaning towards the freakishly obsessed parent. This only got worse when we took caden to a hearing exam this week and he shocked us. He was showing a moderate hearing loss! Caden of all people. There is a huge chance it's just fluid blocking the sounds, not allowing his ear drum to move properly. We are being referred to ENT and we'll see what they find or suggest.
Next week we start the process of getting xander's cyst removed. So we go to a consult with the surgeon, and then the lung doctor and then the ENT for clearance for surgery.
So-- here is sit...just spent my awake alone time googling tons of stuff on preemie hearing loss and resources, and blah blah blah. Is it doing me any good. NO. I have done all I can to this point, so I need to just shut the computer and start my day. My day of NOT worrying, NOT obsessing and just trusting the GOd has it all under control. I often think I am in the driver's seat, and this morning I am reminded and am VERY grateful that I am not!
The boys will go to John Tracy Clinic on February 1st for second opinions on their hearing loss. Is it progressive (like mine)? Is it something that will in fact interfere with speech? I still have so many questions and very little answers. Part of being a mom to micro preemies is learning to "wait and see". waiting for me.....you see.....is NOT easy.
BUT okay God...I get it. Surrender to you....trust that your will be done....and that I just have faith that my boys are in good hands. I pray for wisdom to be the best advocate the boys can have and that God would just direct our steps as we start this next journey (school!). Boys have an IEP today....they may be qualified for an Early Start Preschool.
My ramble...inspired by strong coffee this morning and lack of sleep (as we are weening boys off of their 12 am feeding), is officially over.
TBC
I sort of predicted that the boys would have some issues with hearing....not really giving it much thought. But now that they are 17 months (13 months adjusted) and only babbling mama, I am getting more concerned and starting to find myself on the phone with more specialist, on the Internet looking up more terms, and my mind is going non stop. I think there's a fine line between being a concerned and involved parent, to an overly obsessed control freak. Well...I am currently leaning towards the freakishly obsessed parent. This only got worse when we took caden to a hearing exam this week and he shocked us. He was showing a moderate hearing loss! Caden of all people. There is a huge chance it's just fluid blocking the sounds, not allowing his ear drum to move properly. We are being referred to ENT and we'll see what they find or suggest.
Next week we start the process of getting xander's cyst removed. So we go to a consult with the surgeon, and then the lung doctor and then the ENT for clearance for surgery.
So-- here is sit...just spent my awake alone time googling tons of stuff on preemie hearing loss and resources, and blah blah blah. Is it doing me any good. NO. I have done all I can to this point, so I need to just shut the computer and start my day. My day of NOT worrying, NOT obsessing and just trusting the GOd has it all under control. I often think I am in the driver's seat, and this morning I am reminded and am VERY grateful that I am not!
The boys will go to John Tracy Clinic on February 1st for second opinions on their hearing loss. Is it progressive (like mine)? Is it something that will in fact interfere with speech? I still have so many questions and very little answers. Part of being a mom to micro preemies is learning to "wait and see". waiting for me.....you see.....is NOT easy.
BUT okay God...I get it. Surrender to you....trust that your will be done....and that I just have faith that my boys are in good hands. I pray for wisdom to be the best advocate the boys can have and that God would just direct our steps as we start this next journey (school!). Boys have an IEP today....they may be qualified for an Early Start Preschool.
My ramble...inspired by strong coffee this morning and lack of sleep (as we are weening boys off of their 12 am feeding), is officially over.
TBC
Tuesday, January 4, 2011
Happy New Year!!
Our New Year's Day was spent at one of my most favorite places..THE BEACH! Living in Riverside now, I don't get to see the beach as much as I want, and definitely not as much as I did.
My cousin Kirsten and friend Heidi both joined us for breakfast and a stroll down main beach in Huntington. The boys loved the sand (first time touching it) and the weather couldn't have been more perfect.
2011 is going to be an exciting year....no doubt another year full of challenges and changes. ( As you know, if you have kids, you master one area in parenting and a whole new season begins.)
But one things for sure....
I*LOVE*MY*FAMILY
Thank you Lord for giving me a chance to learn, change, forgive, and love...I pray I can do this job even better in year 2011!
Sunday, January 2, 2011
hearing aids in the near future
Introducing the "speech banana"
I'm not trained in audiology, and I don't know all the technical terms related to audiological testing--however, I have some background in dealing with hearing loss (as a teacher for the Deaf and having my own hearing "issues"). Even if you do not have any background in these things, you can look at this "banana" and interpret it pretty easily.
The numbers running across the top are the frequency sounds (type of sound). The numbers going down is the range of decibel (loudness of sound).
Inside the white banana looking thing, is where we hear all the speech sounds; the sounds vary in decibel as you see.
Braxton and Xander have started some audiological testing with the results somewhat inconclusive due to their age. However, this last appt (last week), the doctor was giving us more of a realistic look at what he may or may not hear right now.
Looking at the speech banana, Xander could hear at a threshold of 40 (at about 400 fq) and 45 (at about 3000 fq). so if you plot those lines you will see the letters positioned above the line are the speech sounds he could miss out on. Every thing below the line he can hear. (note: "normal" hearing is above the 20). There was nothing plotted around the 1000 to 2000 fq range, so I'm not sure what is being heard . From what I remember the doctor saying , hearing is fairly "normal" in this area, so when plotting, the line wouldn't go straight across horizontally.
The reason for all the quotes and uncertainty is because with the boy's ages you can't test the exact DB loss. So the doctor was giving us a worst case and best case scenario. I sorta explained what it would look like in between. When the boys are about 2, they can be tests by turning their heads when they hear a sound, looking at a toy or a light when a certain Db/Fq sound is played. This would give us a better graph on that banana. (I have to go back to school and become a trained audiologist to really explain what i just attempted to explain) :)
SOOOO what does this mean?? It means that the doctor recommends hearing aids for both boys, and speech therapy. Their speech is only that of a 3/4 month old. This could very well be due to their hearing loss, developmental delays, prematurity, being boys, etc etc. Probably all of the above.
Early intervention is key. Although they aren't deaf, and really do hear quite a lot. They are missing some sounds that will effect the ability to articulate speech accurately. These interventions might only be temporary, but necessary for the time being.
Looking back at those meetings in the NICU (with the doctors, nurses, social workers, etc), I remember them saying they could have hearing issues, and how phil and I just smirked at one another. God knows what we can handle, and if this is the extent of their "preemie" issues, bring it! and i won't lie...I'm getting pretty excited thinking about what color hearing aids I should get the boys. Yes....colored aids are totally "in" if you are a kid :)
The boys have come A LONG way, there's no question there. I am very very proud of them! The recent hearing issues are one of the, still, multiple issues we could be facing as they are still developing. Your prayers and support are still very much appreciated!
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