Tuesday, December 23, 2014
At Every Corner
Labels:
grace,
holiday,
spirituality
Thursday, December 4, 2014
another saga for Abel's ears
I think I'm mostly writing this for documentary purposes or perhaps as a way of updating family all at once, but it might be a little bit because I feel like I need to talk about it. I've tried looking at the bright side of the last few months- my deaf child now hears! But because we've had our share of problems since the surgery, there has been a black cloud above it all (a small one, but one just the same). For months, Abel has battled ear infections, Bell's Palsy, balance issues, the flu, and more. This was a happy child. This was a healthy child.
I think his medical professional team is finally starting to listen to me, to my gut, that something is wrong. He has been on every antibiotic known to man. He's taken steroids, ear drops, and tylenol for days because he is so often in pain. I despise pumping all this medicine in him and not ever seeing much improvement. I hate seeing him uncomfortable.
Yesterday was interesting. I loaded up three small boys and drove for at least six hours. I sat through two appointments and an hour and a half break in between. It was miserable, really. What I learned was even more upsetting. Still, Abel has fluid despite the ear tubes. Furthermore, he is no longer responding to most sound on the right side. This was tested in a sound proof booth. His left side remains very consistent, but he may have heard one prompt with the right side processor at the very loudest level. There were no responses after that. Then when he was hooked up to testing equipment, it was revealed that the nerves aren't being activated. His audiologist called me today to tell me that she has never seen much of a response in that test on that side. She said she had hoped it was due to the infection (and she still does), but -knowing the answer -I asked her what the worst case scenario was and she said, "It could be that the implant is failing and needs to be replaced."
Obviously, that's the last thing I want. (*She did add that she didn't think I should worry about that just yet)
His speech therapist received the information from the audiologist and decided to test it in Abe's session this morning. Sure enough, he seemed to hear some things, but he was much less consistent on that side. She is hoping it was an issue with the processor (outside portion) that was set to be replaced anyway because of a broken ear piece. We received the new one today and his speech therapist said she would come by tomorrow to work with him some more after she got off work to see if it was any better.
Meanwhile, I got a call from the surgeon. That's when this all started to sink in for me. He ordered more medicine and broke the news that Abel had to have yet another procedure that requires anesthesia. Yesterday was his second birthday. Christmas is coming soon. I hoped so badly that his recent ear tube re-insertion was the last surgery of the year. He will soon be sedated for a CT scan to look around at the infection site and to make sure the implant hasn't moved. I'm so sad for him.
I hope that one day I can look back on this as most cochlear implant parents have told me and say that it was all worth it. I have faith that I will, but right now my little man is going through so much and I wish he wasn't hurting.
Despite his hurdles, he is still doing great with what he is hearing. Just today, he said "ow ow" (for out. out!) and "mo" for more. It's incredible to hear a deaf child begin to speak using words appropriately and not simply repeating. There was a time that I hardly thought this day would come.
Thank you for praying with us. If you could specifically pray that the infection and fluid would go away, that the implant is in the right spot, and that my sweet Abel starts feeling better I would appreciate it so much.
A year ago today, I was blissfully unaware of what the following year would bring. I was amazed that I had a one year old and a two year old. I had no idea I was pregnant with our third. It hadn't crossed my mind that Abel was deaf. I didn't know how hard this first year would be, but God has brought us through it so far and I'm grateful. I believe He is teaching all of us different lessons. I trust Him. I do.
Labels:
cochlear implants,
hearing stories
Tuesday, December 2, 2014
Serenity Now!
Allow me to tell you what lead me to a crying fit in the parking lot of speech therapy today. I woke up feeling quite ill so I decided to skip the workout I had planned (almost always a mistake). Not having that time to myself set the tone for the day, I think. As always, Abel had a few engagements we had to attend. His case worker and therapist lady (for lack of better terminology) were set to come over. I'll just let your minds wander to the chaos that ensued that had me yelling (literally) half way through the appointment "Serenity now!"
I doubt either of them are Seinfeld fans so they probably just think I'm nuts and well, I guess I am.
Kids fighting. Abel taking off his ears. Pulling off ornaments. Bumping into Christmas trees. Merit crying. Refusing to eat. All of them. Whining. It was just another day in the life, really.
Then J calls me to say he won't be taking Abel to his appointments tomorrow (which means, of course, I will be driving at least 6 hours tomorrow with at least two kids who don't particularly care to be left in a car seat that long...AGAIN).
I briefly consider jumping off a bridge. Try to pump instead. Only got one ounce.
I drive to speech. In the rain. With puke on my pants.
Afterwards, there's a party for all the kiddos in speech therapy. I thought it started at 3, though. It did not. I decided to wait for it to start until Abel decided he'd had enough and started throwing a toddler tantrum on the floor as I attempted to call Vandy to reschedule the appointments because HELLO-HOW-CAN-I-TALK-TO-DOCTORS-WITH-TWO-UNHAPPY-BABIES?! I can't even talk on the phone with one. The girl on the other end of the line tells me that the doctor we need to see is only there two days a week...and by the way, he won't be there at all next week. How do people with jobs do this? No, seriously...I want to know. I can barely keep my head above water. Because she has no appointments, I decide I just have to suck it up and go because Abel is still in pain. He cries for long stretches at night and in the car. He pulls at his ears that are red hot. And my happy child has been grumpy for a long time now. I hate it.
I hung up the phone and high tailed it to the car. I push the button to start it. I'd just have to make my apologies later for missing the party....but what do ya know? Key not detected. Jordan stopped by earlier to bring me a rescue coke and attend speech with us and accidentally took my key home with him in his pocket.
Cue tears.
How was your Tuesday?
Kids fighting. Abel taking off his ears. Pulling off ornaments. Bumping into Christmas trees. Merit crying. Refusing to eat. All of them. Whining. It was just another day in the life, really.
Then J calls me to say he won't be taking Abel to his appointments tomorrow (which means, of course, I will be driving at least 6 hours tomorrow with at least two kids who don't particularly care to be left in a car seat that long...AGAIN).
I briefly consider jumping off a bridge. Try to pump instead. Only got one ounce.
I drive to speech. In the rain. With puke on my pants.
Afterwards, there's a party for all the kiddos in speech therapy. I thought it started at 3, though. It did not. I decided to wait for it to start until Abel decided he'd had enough and started throwing a toddler tantrum on the floor as I attempted to call Vandy to reschedule the appointments because HELLO-HOW-CAN-I-TALK-TO-DOCTORS-WITH-TWO-UNHAPPY-BABIES?! I can't even talk on the phone with one. The girl on the other end of the line tells me that the doctor we need to see is only there two days a week...and by the way, he won't be there at all next week. How do people with jobs do this? No, seriously...I want to know. I can barely keep my head above water. Because she has no appointments, I decide I just have to suck it up and go because Abel is still in pain. He cries for long stretches at night and in the car. He pulls at his ears that are red hot. And my happy child has been grumpy for a long time now. I hate it.
I hung up the phone and high tailed it to the car. I push the button to start it. I'd just have to make my apologies later for missing the party....but what do ya know? Key not detected. Jordan stopped by earlier to bring me a rescue coke and attend speech with us and accidentally took my key home with him in his pocket.
Cue tears.
How was your Tuesday?
Labels:
kids,
motherhood
Friday, November 21, 2014
Thanksgiving {on Abel's deafness}
This year, man. It's been a tough one. I can't say that it has been totally awful because I got to welcome the sweetest surprise baby into my life and I love him deeply. We sure have much to be thankful for. Still, I strive to be honest here and this year has not been the walk in the park we expected when we finally got to move home to East Tennessee. Looking back, I can see God's hand in all of it and his divine plan is truly what I want.
I don't know why Abel is deaf. He's not broken, but I still grieve for his "normal" life from time to time. It hits me like a ton of bricks. It comes at me when I least expect it. 'Sorry, we can't go to the park right now. We have to go to an appointment.' Little things like that get me. He's (almost) two. Now's the time to play. Instead, we spend a lot of time driving and waiting. Waiting for an appointment to start. Waiting for some other problem to arise. Waiting on him to hear consistently. Waiting on him to try to talk. Waiting for me to feel okay about this decision we made to get him cochlear implants. That's what this is about, really.
The truth is, I've never felt completely confident that this is the route we should have taken. Sure, the surgery is in and out for most kids, but my curly headed middle child has had more than his share of hiccups already. It has been roughly three months since his surgery. Since then, he has dealt with constant ear infections because the surgeon removed his tubes during the procedure. While many babes are up and running around within a few days, our post surgery days looked more like this:
He couldn't move his head off the pillow. Then when he finally did a day or two later, he was very off balance. That comes and goes. This past week, he started having symptoms of Bell's Palsy on top of the ear infections. His immune system has been compromised and now he has come down with the flu. And I can't help but think it's my fault that he's dealing with any of it. What if I had just developed my sign language more fully? What if we sent him to the deaf school so he could be around that language? What if I hadn't allowed the cochlear implants to be put in his head, would he still be having all these health problems?
There's the other side of it, too though. What if he resented me for not taking advantage of the window of time as a baby that is best for success with CIs? What if he felt disconnected from his family or his brothers because our sign language skills lacked? What if he never heard his child's voice thirty years down the road and he wondered why I let him miss out on that opportunity?
I could go on forever. Back and forth. Back and forth. I'm not called to do that, though.
In the book of Luke, it says: "Who of you can add an hour to your life by worrying?" Still, I tell myself that I will go into each situation with a positive attitude and I keep up the facade (fake it til ya make it!) for as long as I can muster and eventually end up in a puddle of tears.
Today was no different. Because he has all the issues going on, they wanted to put his ear tubes back in immediately. That procedure is pretty standard. But what was planting itself in the back of my mind was that he had the flu and is having a hard time breathing. It turned out to be a problem with the anesthesiologist, too and he refused to do the surgery. The surgeon was persistent saying that he had to have them (which gave me more to worry about in the back of my mind) and the two of them went toe to toe eventually settling on having the surgery today. I stayed back with the baby because he seems to be developing a cold and I'm nursing. I also needed to be here to get the oldest kiddo, too. During these heated conversations with the doctors helping our boy, I didn't hear from Jordan. After multiple calls and texts went unanswered, I called my sister in a panic attack. I couldn't breathe. I was crying hysterically. I just knew something bad had happened because it always seems to this time of year. I have so many people tell me I'm strong, but these moments remind me I have a long way to go. I think maybe God is slowly peeling back all the layers. Guilt, be gone. Worry, be gone. Trust in ME. I hear it, but I'm like Paul in Romans
"I do not understand what I do. For what I want to do I do not do, but what I hate I do." (Romans 7:15)
So while this may not seem like a typical Thanksgiving post, it's mine. I'm thankful that God is still working on me, that He hasn't given up on me, that He won't. I'm thankful that He is authoring Abel's life. I'm thankful for this amazing opportunity for my boy to have cochlear implants. I'm thankful for his deafness....and I hope he will be, too.
I don't know why Abel is deaf. He's not broken, but I still grieve for his "normal" life from time to time. It hits me like a ton of bricks. It comes at me when I least expect it. 'Sorry, we can't go to the park right now. We have to go to an appointment.' Little things like that get me. He's (almost) two. Now's the time to play. Instead, we spend a lot of time driving and waiting. Waiting for an appointment to start. Waiting for some other problem to arise. Waiting on him to hear consistently. Waiting on him to try to talk. Waiting for me to feel okay about this decision we made to get him cochlear implants. That's what this is about, really.
The truth is, I've never felt completely confident that this is the route we should have taken. Sure, the surgery is in and out for most kids, but my curly headed middle child has had more than his share of hiccups already. It has been roughly three months since his surgery. Since then, he has dealt with constant ear infections because the surgeon removed his tubes during the procedure. While many babes are up and running around within a few days, our post surgery days looked more like this:
He couldn't move his head off the pillow. Then when he finally did a day or two later, he was very off balance. That comes and goes. This past week, he started having symptoms of Bell's Palsy on top of the ear infections. His immune system has been compromised and now he has come down with the flu. And I can't help but think it's my fault that he's dealing with any of it. What if I had just developed my sign language more fully? What if we sent him to the deaf school so he could be around that language? What if I hadn't allowed the cochlear implants to be put in his head, would he still be having all these health problems?
There's the other side of it, too though. What if he resented me for not taking advantage of the window of time as a baby that is best for success with CIs? What if he felt disconnected from his family or his brothers because our sign language skills lacked? What if he never heard his child's voice thirty years down the road and he wondered why I let him miss out on that opportunity?
I could go on forever. Back and forth. Back and forth. I'm not called to do that, though.
In the book of Luke, it says: "Who of you can add an hour to your life by worrying?" Still, I tell myself that I will go into each situation with a positive attitude and I keep up the facade (fake it til ya make it!) for as long as I can muster and eventually end up in a puddle of tears.
Today was no different. Because he has all the issues going on, they wanted to put his ear tubes back in immediately. That procedure is pretty standard. But what was planting itself in the back of my mind was that he had the flu and is having a hard time breathing. It turned out to be a problem with the anesthesiologist, too and he refused to do the surgery. The surgeon was persistent saying that he had to have them (which gave me more to worry about in the back of my mind) and the two of them went toe to toe eventually settling on having the surgery today. I stayed back with the baby because he seems to be developing a cold and I'm nursing. I also needed to be here to get the oldest kiddo, too. During these heated conversations with the doctors helping our boy, I didn't hear from Jordan. After multiple calls and texts went unanswered, I called my sister in a panic attack. I couldn't breathe. I was crying hysterically. I just knew something bad had happened because it always seems to this time of year. I have so many people tell me I'm strong, but these moments remind me I have a long way to go. I think maybe God is slowly peeling back all the layers. Guilt, be gone. Worry, be gone. Trust in ME. I hear it, but I'm like Paul in Romans
"I do not understand what I do. For what I want to do I do not do, but what I hate I do." (Romans 7:15)
So while this may not seem like a typical Thanksgiving post, it's mine. I'm thankful that God is still working on me, that He hasn't given up on me, that He won't. I'm thankful that He is authoring Abel's life. I'm thankful for this amazing opportunity for my boy to have cochlear implants. I'm thankful for his deafness....and I hope he will be, too.
Labels:
cochlear implants,
grace,
guilt,
hearing stories,
motherhood,
spirituality
Thursday, November 20, 2014
3 Month Letter
Dear Sweet Merit,
Happy 3 months to you. I suppose I should start with thank you! Thank you for being such a good, happy boy. You've made the transition from two small kids to three much more manageable than I ever expected. I'm delighted to celebrate three months with you on the outside and in my life officially. From the moment you were born, I've been smitten. You've been a wonderful blessing to me and I'm so thankful that thus far you've been an easy going child. You've been smiling a lot more this month. It's not so hard to make happen. I simply get close to your face and start talking and you are quickly "talking" back and grinning. I love it. You've been grabbing on to toys that dangle above you when we lay you on your play mat or in your bouncy chair. You will also explore by rolling on your side, but that's as far as you care to get. You hate tummy time (so do I!) and you come by that honestly because you're brothers weren't too fond of it either. They are pretty good to you. They are jealous at times, but both quick to help you with your paci or pat your sweet little head. We all love you so much! Daddy keeps telling me how you two have bonded this month and every time it's time for you to go to bed, he says, "He is a cute one, isn't he?" You are. The cutest.
Love you to the moon and back,
Mama
P.S. You were adorable last month, too. I just never wrote you a letter to tell ya!
Happy 3 months to you. I suppose I should start with thank you! Thank you for being such a good, happy boy. You've made the transition from two small kids to three much more manageable than I ever expected. I'm delighted to celebrate three months with you on the outside and in my life officially. From the moment you were born, I've been smitten. You've been a wonderful blessing to me and I'm so thankful that thus far you've been an easy going child. You've been smiling a lot more this month. It's not so hard to make happen. I simply get close to your face and start talking and you are quickly "talking" back and grinning. I love it. You've been grabbing on to toys that dangle above you when we lay you on your play mat or in your bouncy chair. You will also explore by rolling on your side, but that's as far as you care to get. You hate tummy time (so do I!) and you come by that honestly because you're brothers weren't too fond of it either. They are pretty good to you. They are jealous at times, but both quick to help you with your paci or pat your sweet little head. We all love you so much! Daddy keeps telling me how you two have bonded this month and every time it's time for you to go to bed, he says, "He is a cute one, isn't he?" You are. The cutest.
Love you to the moon and back,
Mama
P.S. You were adorable last month, too. I just never wrote you a letter to tell ya!
Labels:
baby,
motherhood
Sunday, November 9, 2014
Tender, Tough, and Strong
Labels:
kids,
motherhood,
music
Sunday, November 2, 2014
Halloween 2014
Typically, I'm a bonafide Halloween nutcase. Elaborate costumes are planned months in advance and I spend time carefully selecting and making all garments and props. This year? Well, I had another kid to think about--making the number of costumes to create climb to FIVE. I started feeling as if I shouldn't go all out because we didn't have the money to spend on such things. I was getting a bit down because I love Halloween so much. I always have. But I started thinking maybe it's time for me to grow up.
I quickly came to my senses and reminded myself that, of course, I was going trick or treating with my kiddos. It's quite possibly my favorite day of the year and I didn't want to miss it just because I was having a hard time managing to get my act together. I decided I wasn't SuperMom, but I could totally be her for Halloween. I thought, "How perfect would it be to all be superheroes in honor of Abel's first hearing Halloween?" I set to work making SuperK and Bionic Boy costumes.
I made them masks, capes, and shirts but of course it didn't all get worn. There's always someone mad on October 31st and it's almost always a toddler. This year I have two toddler/preschool aged crazy people so they took turns refusing garments, pictures, and/or having to {gasp} walk to retrieve their candy. It's a hard life, you know?
Anyway, we had a great evening. Perhaps my favorite costume this year that I threw together at the last minute was baby Merit's. He made the cutest Superman.
Jordan pulled off a spectacular superhero last minute costume, too. I thought my SuperMom threads looked pretty dang good, too. Total cost for this entire family of five costumes? Less than $20. I hope I never buy store bought costumes.
The boys' babysitter joined us in our trick-or-treating. I just love her. She's wonderful with the kids and I feel like I can just sit and talk to her like a friend. I know God blessed us when He sent us her. I was glad to have her helping hands, too when Abel decided that all he wanted to do was plop down on the road and dig into the chocolate. It proved to be quite a task to carry Abel on my hip while wearing Merit on my front. Jordan was busy chasing after Kinley who was excitedly running house to house and thanking all our neighbors for their generous candy donations. Then it started raining. That cold rain, you know? We hurried home after hitting a few houses and built a fire and ordered takeout.
I quickly came to my senses and reminded myself that, of course, I was going trick or treating with my kiddos. It's quite possibly my favorite day of the year and I didn't want to miss it just because I was having a hard time managing to get my act together. I decided I wasn't SuperMom, but I could totally be her for Halloween. I thought, "How perfect would it be to all be superheroes in honor of Abel's first hearing Halloween?" I set to work making SuperK and Bionic Boy costumes.
I made them masks, capes, and shirts but of course it didn't all get worn. There's always someone mad on October 31st and it's almost always a toddler. This year I have two toddler/preschool aged crazy people so they took turns refusing garments, pictures, and/or having to {gasp} walk to retrieve their candy. It's a hard life, you know?
Anyway, we had a great evening. Perhaps my favorite costume this year that I threw together at the last minute was baby Merit's. He made the cutest Superman.
Jordan pulled off a spectacular superhero last minute costume, too. I thought my SuperMom threads looked pretty dang good, too. Total cost for this entire family of five costumes? Less than $20. I hope I never buy store bought costumes.
It was a great day.
What costumes did you come up with this year?
What costumes did you come up with this year?
Labels:
cochlear implants,
creativity,
fall,
halloween,
holiday,
kids
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