Several month ago I attended an amazing event called Women of Faith. It was my first time attending, and I wasn't sure what to expect. While the entire experience as a whole was amazing, there was one particular speaker who suction-cupped my heart from the first word that came out of her mouth.
I listened to a group of women who talked about things like Moses being a basket case. Then a bench warmer. Then a bushwhacker. I learned about Birdbath Bob and his crazy shenanigans. I learned about how things would change if I just.did.what.I.could. I listened to the amazing Amy Grant's voice soar over our miseries. Her album was the first CD I ever bought (OOOHHH) and she's still amazing as ever.
And then, Brenda Warner danced across the stage and began sharing her story.
Have you ever listened to a story and felt your stomach tie up in knots, just knowing the story is about to go south at any moment? Yep-I was feelin' the knots.
If you haven't heard her story-you should. Really. In short, her neuro-typical son suffered brain trauma and became blind after slipping out of her husband's arms after a bath. Her story is rooted in so much more than that, but its her story to tell-not mine. Read her book. Or find her on the street. Seriously, you should.
My tears began when she said the well-baby check visit was the only appointment she didn't mind....because that was normal and every other mom was taking their child to that appointment. She shared her life story and how that changed with certain phone calls, her son's birth, her parents deaths, and her marriage to Kurt Warner.
She went on and the suction on my heart became so tight, I lost it. As in, an almost visceral reaction. I.could.not.breathe. I'm pretty sure I was beginning to hyperventilate while trying (with horrible failure) to hold myself together. Pfff. Yeah, you look like a bawling moron because you are just that. Not that moron part, but the bawling part. My sweet friends, sitting next to me and in front of me, offered hands and squeezes of comfort and love-which made me cry even harder. This journey has been hard, and it is rare for me to have, much less be forced, to meddle in its rawness.
Her son is now grown and lives in a group home, on his own. And is thriving. How do I know? Because she brought him out at the end of her story. She bragged on him and shared his amazing personality and sense of humor. Most of all, his perspective to and for life was refreshing. He lived. He thrived. He had a future. She did it. Through all the struggle, heartache, crappy phone calls, and her journey with trusting God, she.did.it.
At some point, I felt myself shaking and ran for the bathroom. You know, whoever decided it was a good idea to put thousands of emotion women in an area with stairs in the dark was just not thinking! After I did some forced deep breathing and tried to focus my attention on the writing contest poster attached to the stall door, I walked back through the concourse to my section. Two friends stopped me just outside and said, "You have to come and see this, Zach (Brenda's son) is singing with Amy Grant. I stopped dead in my tracks. The voice of a modern Joni Mitchell and this amazing young man were too much. I stood with them for a few minutes on the platform to our section, choking back more tears and fighting that visceral feeling again.
I've thought of Brenda a lot since then. I bought her book, but I prefer her personal delivery much more. Raising AJ has been a constant flight or fight choice. I've always chosen fight. Doing so numbs you a bit. You just do. And process your emotions later. Sometimes they creep in, like in the heat of the moment, but the flight kicks in and the emotions are tucked away again. Listening to Brenda's story forced me into a place I don't go. Really, I don't. What better place to dig in than in the middle of thousands of women. Fantastic. Honestly, I didn't care, but now that I think about it, its humorous.
Sometimes I find it hard to relate to other mothers. Ok, a lot of times. Gone is the jealousy, bitterness, and anger toward them for their normal-or whatever I assumed their/normal in general to be. Here was this complete stranger, hundreds of feet away from me and she's got a suction cup on my heart. I kept nodding and bawling, nodding and bawling. She got it. She got me. She got the struggle. She got the triumph. She got the joy. She got the humbleness. She.got.it.all.
Today, I was sitting in the neurologist's office with AJ as the nurse was asking me the questions she asks me each time were there. I stopped dead in my tracks with her last question. Any other specialists? I had no answer. I ran through my mental Rolodex of "AJ Providers" and nothing came up. I said, "No. Just you."
One.
Suddenly, having a pediatrician and just the neurologist added to the mix made me feel like every other mom on the planet. I felt liberated and ecstatic for my little boy. Oh wait, there is another! The dentist. Oh wait! He's normal too!!! We are down to one. One extra. And you know what? One extra is just like that well-baby check visit. I didn't mind.
I hope one day to meet Brenda. In fact, I imagine us having lunch, reading our memoirs together, and crying together. Sappy I know. But not everyone has the ability to suction cup a heart. At least not mine.
Monday, April 1, 2013
Wednesday, February 6, 2013
Breathing
Last night, six pairs of snow-caked black boots stood in my living room. The flashing lights outside our house at 10pm notified the whole neighborhood that we had company.
After fighting sleep for three hours, I began prepping the "I don't know what else to do" meal for AJ. Warm oatmeal made with milk instead of water (every calorie helps) and some juice.
AJ took a drink of juice, doubled over, and began to choke. And.I.mean.choke. He got it up, whatever it, was, and then...is airway was blocked and he turned a not-so-nice color.
By the time the dispatch finished asking me 3,485 questions, she then transferred me to our local department where I repeated the same information. He was already back to semi-normal by the time my phone conversation was ending. She was telling me what to do: don't give him anything to eat or drink, if he stops breathing or vomits, turn him on his side, put away family pets, have the door open and the light on, and someone to greet the emergency team when they arrive.... Sister, I got this. Really. Who else do you know can do all that while on the phone with 911 and get dressed at the same time?
The team attempted to check AJ's oxygen level, which is always humorous. He gingerly screams and they fall more and more in love with him. Jeremy gives his nurse/Dad report. As the team left, I hear he's so cute multiple times. When they leave, I fight the urge to hug the snot out of them. I have a deep, deep appreciation for our emergency responders. Let me tell you....
AJ was giggling as they walked out the door. Jeremy and I? After putting AJ to bed, Retreated to our laptops for a good half an hour and then continued to vegetate watching our DVR'ed shows. It is hard to come down from so much adrenaline.
While our child possesses the amazing capability of bouncing back from such things, we aren't quite as fast. Us, being late with something. Imagine that.
I lost my breath walking back to my car after dropping him off at school. I slept through my alarm and picked him up late. When we got home, I parked the car and sat with my eyes closed for I don't know how long. I was just thankful that today AJ wasn't in a manic panic to get out of the car right away. My entire being shut down. When I opened my eyes, it took every fiber of my being to crawl out of that car. Does that sound dramatic? Yes. Was it? Yes. It is hard to keep on keeping on sometimes. The afternoon routine commenced as usual, except my little man was tired. I could tell in his sweet, brown droopy eyes.
After his bath we made our way downstairs to the playroom. He walked a half-mile on the treadmill. He swung in two of his three swings. And then-he cuddled with his mama. I cannot tell you how precious it feels to have my son find comfort-in me. My breathing relaxed. So did his. How can such a tiny soul produce such strength?
This mish-mosh of days is another example of how I am solid in my commitment to slow down. Sloooo-ooooww Doowwwn. Every life is precious. My son's life is precious. And I will never get these sweet moments with him back. There is no repeat in life. I won't say his life flashed before my eyes last night, because that would be super dramatic and over the top. But-there will always be another concert, another game, another movie, another assignment, another tangible thing to fling ourselves to. There will always be dishes, laundry, and a to-do-list for me to complete.
I keep looking at my sweet boy and wondering how on earth he has gotten so big. How has he made so much progress? How has he overcome so much and still fills his life and other's lives with so.much.joy? Last night scared the whoppers out of me. But-He started breathing again.
If he can do it, so can I.
After fighting sleep for three hours, I began prepping the "I don't know what else to do" meal for AJ. Warm oatmeal made with milk instead of water (every calorie helps) and some juice.
AJ took a drink of juice, doubled over, and began to choke. And.I.mean.choke. He got it up, whatever it, was, and then...is airway was blocked and he turned a not-so-nice color.
By the time the dispatch finished asking me 3,485 questions, she then transferred me to our local department where I repeated the same information. He was already back to semi-normal by the time my phone conversation was ending. She was telling me what to do: don't give him anything to eat or drink, if he stops breathing or vomits, turn him on his side, put away family pets, have the door open and the light on, and someone to greet the emergency team when they arrive.... Sister, I got this. Really. Who else do you know can do all that while on the phone with 911 and get dressed at the same time?
The team attempted to check AJ's oxygen level, which is always humorous. He gingerly screams and they fall more and more in love with him. Jeremy gives his nurse/Dad report. As the team left, I hear he's so cute multiple times. When they leave, I fight the urge to hug the snot out of them. I have a deep, deep appreciation for our emergency responders. Let me tell you....
AJ was giggling as they walked out the door. Jeremy and I? After putting AJ to bed, Retreated to our laptops for a good half an hour and then continued to vegetate watching our DVR'ed shows. It is hard to come down from so much adrenaline.
While our child possesses the amazing capability of bouncing back from such things, we aren't quite as fast. Us, being late with something. Imagine that.
I lost my breath walking back to my car after dropping him off at school. I slept through my alarm and picked him up late. When we got home, I parked the car and sat with my eyes closed for I don't know how long. I was just thankful that today AJ wasn't in a manic panic to get out of the car right away. My entire being shut down. When I opened my eyes, it took every fiber of my being to crawl out of that car. Does that sound dramatic? Yes. Was it? Yes. It is hard to keep on keeping on sometimes. The afternoon routine commenced as usual, except my little man was tired. I could tell in his sweet, brown droopy eyes.
After his bath we made our way downstairs to the playroom. He walked a half-mile on the treadmill. He swung in two of his three swings. And then-he cuddled with his mama. I cannot tell you how precious it feels to have my son find comfort-in me. My breathing relaxed. So did his. How can such a tiny soul produce such strength?
This mish-mosh of days is another example of how I am solid in my commitment to slow down. Sloooo-ooooww Doowwwn. Every life is precious. My son's life is precious. And I will never get these sweet moments with him back. There is no repeat in life. I won't say his life flashed before my eyes last night, because that would be super dramatic and over the top. But-there will always be another concert, another game, another movie, another assignment, another tangible thing to fling ourselves to. There will always be dishes, laundry, and a to-do-list for me to complete.
I keep looking at my sweet boy and wondering how on earth he has gotten so big. How has he made so much progress? How has he overcome so much and still fills his life and other's lives with so.much.joy? Last night scared the whoppers out of me. But-He started breathing again.
If he can do it, so can I.
Wednesday, January 2, 2013
Five Years to Healing
I remember that moment like it was yesterday. I walked up what seemed to be never-ending stairs and saw a bright, sunlit space filled with bambinos. I hadn't even noticed the rooms off to the right or to the left. My broken Spanish got the point across that we were looking for Sylvia, our son's caregiver.
She came flitting by us, flashing her sweet smile we had seen before-only in pictures. She motioned for us to follow her into the room on the right. We stood in the doorway, between the light and the dark room she had walked into. She walked to the row of bassinets on the back wall and picked up a tiny, precious child. We backed into the hallway as she walked towards us. At first, I thought he was wrong child. And then-I saw his sweet, sleepy face.
Sylvia handed him to me with gentle care. I wrapped him in my arms and closed my eyes. AJ wrapped his fragile little fingers around my woven purse strap. He snuggled into my chest. I didn't want to move. Neither did my son. I opened my eyes to see my husband beaming with pride. I handed him his son and instantly fell in love with him all over again. There is something about men and their children that stirs this incredible emotional love inside those of us who love them.
For a very, very long time I was unable to recall or share memories such as the one above. The circumstances, wrong-doing, etc. that occurred when we adopted deeply overshadowed some very sweet memories. Everything in relation to our adoption became negative. Everything was wrong. I couldn't talk about the adoption without including all the things that were wrong. I was a sad, sad person.
Yet at the center of it, was this precious little boy. This human, living soul who was in the midst of all this pain and anger. I've always been able to, somehow, compartmentalize what happened with the adoption and my love and caring for AJ. A blessing, without a doubt. But it was still an unfair perspective, to both of us.
It took five solid years, almost to the day, for me to heal those wounds. It was a bright and sunny morning in August. I found myself is a sea of tears standing during the music portion of our church service. No one noticed me, bawling upright. It was a clear moment. I.just.let.it.go. And I haven't looked back.
I can recall many, many, many conversations with myself over this very issue. My heart wasn't healed. I wanted it to be, but it just wasn't time. I have no idea why it took five years-but it did. No matter how many people told me to "get over it" or "it's not that bad" or "well my child does this", I was still aching in pain. What I didn't realize that I was healing, a little bit at a time, as the years passed.
Recently, we've been surrounded by many people adopting. Adopting domestically, internationally, fostering, and fostering-to-adopt. These friends have been kind in sharing their stories, just as we continue to share our adoption story. But the amazing thing? Their love and passion for adoption is reminding me of those amazing moments WE experienced when we adopted AJ. How I didn't blink when traveling to a foreign country three times. How I didn't care about everyone else's opinions on how we were crazy. How extraordinary it was to love and miss this little boy I hadn't even met yet. How exciting it was to decorate his nursery. How overwhelming it felt when they placed him in our arms-FOREVER. How full my heart was after a long trip home and watching him sleep in his crib for the very first time.
He has blessed our lives tremendously. How we "got" AJ doesn't matter anymore. He's here and is my beautiful little boy. He keeps me centered and focused on what is truly important. I don't stress over the little things anymore.
Adoption is an amazing experience. It's where my healing began...
P.S. Happy New Year!
She came flitting by us, flashing her sweet smile we had seen before-only in pictures. She motioned for us to follow her into the room on the right. We stood in the doorway, between the light and the dark room she had walked into. She walked to the row of bassinets on the back wall and picked up a tiny, precious child. We backed into the hallway as she walked towards us. At first, I thought he was wrong child. And then-I saw his sweet, sleepy face.
Sylvia handed him to me with gentle care. I wrapped him in my arms and closed my eyes. AJ wrapped his fragile little fingers around my woven purse strap. He snuggled into my chest. I didn't want to move. Neither did my son. I opened my eyes to see my husband beaming with pride. I handed him his son and instantly fell in love with him all over again. There is something about men and their children that stirs this incredible emotional love inside those of us who love them.
For a very, very long time I was unable to recall or share memories such as the one above. The circumstances, wrong-doing, etc. that occurred when we adopted deeply overshadowed some very sweet memories. Everything in relation to our adoption became negative. Everything was wrong. I couldn't talk about the adoption without including all the things that were wrong. I was a sad, sad person.
Yet at the center of it, was this precious little boy. This human, living soul who was in the midst of all this pain and anger. I've always been able to, somehow, compartmentalize what happened with the adoption and my love and caring for AJ. A blessing, without a doubt. But it was still an unfair perspective, to both of us.
It took five solid years, almost to the day, for me to heal those wounds. It was a bright and sunny morning in August. I found myself is a sea of tears standing during the music portion of our church service. No one noticed me, bawling upright. It was a clear moment. I.just.let.it.go. And I haven't looked back.
I can recall many, many, many conversations with myself over this very issue. My heart wasn't healed. I wanted it to be, but it just wasn't time. I have no idea why it took five years-but it did. No matter how many people told me to "get over it" or "it's not that bad" or "well my child does this", I was still aching in pain. What I didn't realize that I was healing, a little bit at a time, as the years passed.
Recently, we've been surrounded by many people adopting. Adopting domestically, internationally, fostering, and fostering-to-adopt. These friends have been kind in sharing their stories, just as we continue to share our adoption story. But the amazing thing? Their love and passion for adoption is reminding me of those amazing moments WE experienced when we adopted AJ. How I didn't blink when traveling to a foreign country three times. How I didn't care about everyone else's opinions on how we were crazy. How extraordinary it was to love and miss this little boy I hadn't even met yet. How exciting it was to decorate his nursery. How overwhelming it felt when they placed him in our arms-FOREVER. How full my heart was after a long trip home and watching him sleep in his crib for the very first time.
He has blessed our lives tremendously. How we "got" AJ doesn't matter anymore. He's here and is my beautiful little boy. He keeps me centered and focused on what is truly important. I don't stress over the little things anymore.
Adoption is an amazing experience. It's where my healing began...
P.S. Happy New Year!
Monday, December 10, 2012
Cha-Cha-Cha-Changes
There's something to be said about this time of year. Perhaps it is a bit delayed this year as we haven't yet seen an snow here? There are things that remain static, and things that change. Only one is predictable, though.
The last of the leaves were scraped off the curb last week. A mix of rain and sleet seems to fall every few days. We've done entirely too much switching back and forth between sweatshirts and the whole winter get-up. Soups and hot cocoa have become regulars in our kitchen. I'm starting to think about putting up our Christmas tree. Some gifts are wrapped and hidden from peaking eyes. All these things-static. traditional. routine.
But among all this is one constantly changing little boy. He has amazed us in the last few months. There aren't enough words in the English vocabulary to describe how much incredible progress AJ had made. It has gently reminded me to enjoy each precious moment with him. Suddenly, his life feels like its in fast forward. I am indeed not sad about this revelation. In fact, I'm delighted. Ask any special needs parent and I'm sure they'd agree.
When our children grow, in any way shape or form, it is monumental. How our children's lives begin is never far from our minds. AJ has recently designated himself as the official light-switch operator. It started with just his own light-switch in his room, but has since migrated throughout the house. Besides the obvious gains of cause & effect understanding, fine-motor, and gross-motor, the most important gain is the simplicity of the act. As I observed him giggling, turning lights on and off around the house, my mind was flipping back as fast as a tape deck gone haywire. That sound was there too. Come to think of it this flipping reminded me of a view master. {Can you tell I was an 80's child?} From a limp, tiny child to a tall, ever-increasingly independent big 6.5 year old who is doing things we were told were very unlikely.
Keep flipping those light-switches kiddo. Change is a good thing.
The last of the leaves were scraped off the curb last week. A mix of rain and sleet seems to fall every few days. We've done entirely too much switching back and forth between sweatshirts and the whole winter get-up. Soups and hot cocoa have become regulars in our kitchen. I'm starting to think about putting up our Christmas tree. Some gifts are wrapped and hidden from peaking eyes. All these things-static. traditional. routine.
But among all this is one constantly changing little boy. He has amazed us in the last few months. There aren't enough words in the English vocabulary to describe how much incredible progress AJ had made. It has gently reminded me to enjoy each precious moment with him. Suddenly, his life feels like its in fast forward. I am indeed not sad about this revelation. In fact, I'm delighted. Ask any special needs parent and I'm sure they'd agree.
When our children grow, in any way shape or form, it is monumental. How our children's lives begin is never far from our minds. AJ has recently designated himself as the official light-switch operator. It started with just his own light-switch in his room, but has since migrated throughout the house. Besides the obvious gains of cause & effect understanding, fine-motor, and gross-motor, the most important gain is the simplicity of the act. As I observed him giggling, turning lights on and off around the house, my mind was flipping back as fast as a tape deck gone haywire. That sound was there too. Come to think of it this flipping reminded me of a view master. {Can you tell I was an 80's child?} From a limp, tiny child to a tall, ever-increasingly independent big 6.5 year old who is doing things we were told were very unlikely.
Keep flipping those light-switches kiddo. Change is a good thing.
Monday, October 1, 2012
All the Ups
First, allow me to clarify what I meant about how thinking about AJ's future is painful. It is not ALL painful. But the detour is initially painful. You know, your drivin' along and suddenly are faced with a detour? Some frustration sets in and perhaps a slight bit of panic as to where is blue blazes this detour is going to take you, as well as whether or not you'll arrive at your destination on time because of this blasted detour. Does this sound familiar?
I think what was the most painful was changing the mindset. Our journey has not been classic. I prefer to think of it as unique. But there have been serious moments of pain when you realize your child will not be sitting on that bar stool at a college bar with his friends, or any other of the myriad of classic moments in a child's life. The process of changing your mindset is painful. But here's the thing: I don't care about that anymore. AJ will be AJ and his life will be full and enjoyable. We'll do whatever it is he needs/wants. I worry more about the logistics of this new road of a life-time of care for him. I know his life will be outstanding. No doubt.
So, moving on to the ups...
AJ saw his GI doctor in August. It was so hard for me to believe that he hadn't been there in a year. First stop, weight. 31.5 lbs. Woot Woot! Second stop, the room with a view. I secretly hope each time we visit the GI clinic that we get this one specific room that has a whole wall that is a window. And then, AJ was discharged. Say what? I was in complete shock. AJ? He was busy playing with the otoscope which, why do they have an otoscope at the GI? Anyway, they feel he is doing so well there is nothing else they can do for him, other than what we keep doing. Last year they were a bit concerned about his calcium intake, but since he's now drinking white milk, and loves all sorts of dairy products, they aren't concerned. On the days where milk isn't his choice, we give him a Tums. Yeah, and he eats it. He's growing like a weed, so I wouldn't be surprised if he's now around the 33lb mark. Way to go buddy!
During the first week of school we had AJ's private feeding therapist come in and do a consult with AJ's school staff. I was there too. The week prior, I had witnessed him eating in the cafeteria. Woah. Sensory overload and HOLY LOUD. Yep, I'm that mom that walks around her kids school with her cell phone out. Really, I have a purpose. I'm checking to see how loud things are. After watching him, I immediately stated to his staff that he cannot eat in here. He's now eating upstairs in a classroom with friends. His whole entire demeanor has changed, his behaviors are slim to none, and he's not on sensory overload, so he actually eats his food. The staff is very comfortable with AJ's eating style. This brings me a HUGE amount of relief. He has a current Feeding Plan on file. I am one happy momma.
A few weeks ago I had AJ's CI processors tweaked. It's been awesome. Now that we are aware of how loud certain environments are for him, things make so much more sense. He's no longer hating his CIs. That's truly the best way I can describe it. His audiologist tweaked his sensitivity, which has been sooooo awesome. He's been doing well at school, but still prefers only one ear on the majority of the time. We saw AJ's audiologist last week-she wanted to know who this kid was in front of her. When she came out to get us, he was in the middle of putting his coil back ON himself because he know he was missing out on sound. Holy awesomeness. He was much calmer during the appointment and when he wandered into the soundbooth, we followed. He sat on my lap, with one of the audi's in front of us, while the other was behind the window running the testing. I haven't been in the booth with him for a very, very long time. He's never just sat in my lap. His audi didn't even need toys to distract him. After I had said that anything over 70dB causes him to take a coil off, we started there, testing several frequencies. He responded to the VRA-WHOA. He lasted about 10 minutes, which was amazing for him. They also tested higher dB's and at mid-frequency, he responded at 30dB bilaterally. Woot woot!!!! We called that a success and got out of there before things got ugly! His audi ended up tweaking the sensitivity just a little bit more. Like, a smidge. We're giving him 2-3 weeks to adjust and then we'll go from there. I'm determined to keep on top of this. It is SO COOL to see him put his own CIs on because he wants to hear. That is a cochlear implant parents DREAM come true.
I've had to raise the swings on our swingset twice. I've had to raise the rings on our swingset twice, because someone keeps on growing, and growing, and growing. Which is good, and sorta bad. It's shocking to us because we've gone years with praying he'd grow with very slow progress. So its weird to us. He's way to heavy to pick up and carry now-which you'd think at 30 some pounds that wouldn't be too bad. AJ is dead-weight when you pick him up-the majority of the time. Ufta. He's too big for the infant straps in his car seats. This all so exciting, and nerve-racking at the same time. When he grows, he hurts. For those of you that are newly reading my humble little blog-his cerebral palsy prevents the message from his brain to his muscles to happen normally. So, he grows, his bones grow, but his muscles stay. Tight. Ouch. Hurt. So, growing can be painful for him and increase his tone. When he grows, its like he's walking in 4 inch heels all the time. It totally screws up his body awareness. We bulk up his time of his gigundo yoga ball, swing him (helps him loosen up) a lot, do lots of deep tissue massage, and long baths. Our whirlpool tub is the absolute best thing about this house, because AJ has benefited so much from it.
Lots of tune-ups, change-ups, and growing up going on!
I think what was the most painful was changing the mindset. Our journey has not been classic. I prefer to think of it as unique. But there have been serious moments of pain when you realize your child will not be sitting on that bar stool at a college bar with his friends, or any other of the myriad of classic moments in a child's life. The process of changing your mindset is painful. But here's the thing: I don't care about that anymore. AJ will be AJ and his life will be full and enjoyable. We'll do whatever it is he needs/wants. I worry more about the logistics of this new road of a life-time of care for him. I know his life will be outstanding. No doubt.
So, moving on to the ups...
AJ saw his GI doctor in August. It was so hard for me to believe that he hadn't been there in a year. First stop, weight. 31.5 lbs. Woot Woot! Second stop, the room with a view. I secretly hope each time we visit the GI clinic that we get this one specific room that has a whole wall that is a window. And then, AJ was discharged. Say what? I was in complete shock. AJ? He was busy playing with the otoscope which, why do they have an otoscope at the GI? Anyway, they feel he is doing so well there is nothing else they can do for him, other than what we keep doing. Last year they were a bit concerned about his calcium intake, but since he's now drinking white milk, and loves all sorts of dairy products, they aren't concerned. On the days where milk isn't his choice, we give him a Tums. Yeah, and he eats it. He's growing like a weed, so I wouldn't be surprised if he's now around the 33lb mark. Way to go buddy!
During the first week of school we had AJ's private feeding therapist come in and do a consult with AJ's school staff. I was there too. The week prior, I had witnessed him eating in the cafeteria. Woah. Sensory overload and HOLY LOUD. Yep, I'm that mom that walks around her kids school with her cell phone out. Really, I have a purpose. I'm checking to see how loud things are. After watching him, I immediately stated to his staff that he cannot eat in here. He's now eating upstairs in a classroom with friends. His whole entire demeanor has changed, his behaviors are slim to none, and he's not on sensory overload, so he actually eats his food. The staff is very comfortable with AJ's eating style. This brings me a HUGE amount of relief. He has a current Feeding Plan on file. I am one happy momma.
A few weeks ago I had AJ's CI processors tweaked. It's been awesome. Now that we are aware of how loud certain environments are for him, things make so much more sense. He's no longer hating his CIs. That's truly the best way I can describe it. His audiologist tweaked his sensitivity, which has been sooooo awesome. He's been doing well at school, but still prefers only one ear on the majority of the time. We saw AJ's audiologist last week-she wanted to know who this kid was in front of her. When she came out to get us, he was in the middle of putting his coil back ON himself because he know he was missing out on sound. Holy awesomeness. He was much calmer during the appointment and when he wandered into the soundbooth, we followed. He sat on my lap, with one of the audi's in front of us, while the other was behind the window running the testing. I haven't been in the booth with him for a very, very long time. He's never just sat in my lap. His audi didn't even need toys to distract him. After I had said that anything over 70dB causes him to take a coil off, we started there, testing several frequencies. He responded to the VRA-WHOA. He lasted about 10 minutes, which was amazing for him. They also tested higher dB's and at mid-frequency, he responded at 30dB bilaterally. Woot woot!!!! We called that a success and got out of there before things got ugly! His audi ended up tweaking the sensitivity just a little bit more. Like, a smidge. We're giving him 2-3 weeks to adjust and then we'll go from there. I'm determined to keep on top of this. It is SO COOL to see him put his own CIs on because he wants to hear. That is a cochlear implant parents DREAM come true.
I've had to raise the swings on our swingset twice. I've had to raise the rings on our swingset twice, because someone keeps on growing, and growing, and growing. Which is good, and sorta bad. It's shocking to us because we've gone years with praying he'd grow with very slow progress. So its weird to us. He's way to heavy to pick up and carry now-which you'd think at 30 some pounds that wouldn't be too bad. AJ is dead-weight when you pick him up-the majority of the time. Ufta. He's too big for the infant straps in his car seats. This all so exciting, and nerve-racking at the same time. When he grows, he hurts. For those of you that are newly reading my humble little blog-his cerebral palsy prevents the message from his brain to his muscles to happen normally. So, he grows, his bones grow, but his muscles stay. Tight. Ouch. Hurt. So, growing can be painful for him and increase his tone. When he grows, its like he's walking in 4 inch heels all the time. It totally screws up his body awareness. We bulk up his time of his gigundo yoga ball, swing him (helps him loosen up) a lot, do lots of deep tissue massage, and long baths. Our whirlpool tub is the absolute best thing about this house, because AJ has benefited so much from it.
Lots of tune-ups, change-ups, and growing up going on!
Wednesday, September 26, 2012
Constant Encouragement
The trees are turning and the leaves are beginning to fall. My street is full of a unique blend of green grass, mixed with golden yellow and burnt orange sprinkles of leaves. This time of year makes me reflect. It also makes me feel like life is in fast-forward.
We live across the street from a CBR, which stands for Community Based Residential Facility. You can read about them here. It was Halloween last year when I noticed something particular. While handing out candy to the adorable little kiddos, I noticed a Christmas tree in the front window of this house. Fully lit, with those big beautiful colored glass bulbs that you can't find anymore. If you do find them, the colors just aren't the same as the old ones. Jeremy was familiar with CBRs, but I was not.
This bothered me for weeks. Ok, let's be honest-months. Do you remember this post? I had same pent up feelings as when I was in that store. I didn't want to look at the house, nor did I want to pay attention to the coming and goings of the people that live there.
Shut it out. Tune it out. Make it disappear.
Thinking about your special needs child's future is a Catch 22. You have a hard time living in the moment because you know all of the things your child needs to do/accomplish/learn in his life. In the same breath, you don't want to think about the future because it is painful. Extremely painful.
I didn't want to think about my son being in a CBR. I didn't want him to be different.
Yesterday, my friend from the CBR did his daily morning walk and greeted AJ and I as we made our way to the car. I was sad when they took the Christmas tree down...even though it was well beyond the holiday season. I started to yearn for AJ to have the opportunity to live within the community...semi-independently. If you are thinking it is too early to be thinking about this-trust me-it is NOT.
My thoughts have changed and my heart has healed a little bit more. At this point, AJ would not be able to live in a CBR. I won't go into the reasonings, but coming to that conclusion was painful. But once it was made, a little more healing took place.
I must admit that I am struggling with juggling finishing my BA with all of AJ's needs, as well as just running the show around here. I finished my last class with a full night of tears and feeling completely overwhelmed and exhausted. I was bound to hit a wall sooner or later, right?
Yesterday morning I looked out the window and saw the leaves falling and the breeze blowing the beautiful maple tree that stands in the CBR's front yard. The presence of the CBR is my constant encouragement. While AJ is my first encouragement, the house is my second. I am not only finishing my degree for myself, but also to provide for our son. Jeremy is going for his NP to provide for us as a family and for AJ. We are planning our retirement with AJ.
So, I'm beginning this new class with my spirits lifted a bit higher, and my constant encouragement across the street. I'm doing my best to remember that this is only a season. And if life keeps flying by as fast as I feel it is, it will go faster than I think it will.
We live across the street from a CBR, which stands for Community Based Residential Facility. You can read about them here. It was Halloween last year when I noticed something particular. While handing out candy to the adorable little kiddos, I noticed a Christmas tree in the front window of this house. Fully lit, with those big beautiful colored glass bulbs that you can't find anymore. If you do find them, the colors just aren't the same as the old ones. Jeremy was familiar with CBRs, but I was not.
This bothered me for weeks. Ok, let's be honest-months. Do you remember this post? I had same pent up feelings as when I was in that store. I didn't want to look at the house, nor did I want to pay attention to the coming and goings of the people that live there.
Shut it out. Tune it out. Make it disappear.
Thinking about your special needs child's future is a Catch 22. You have a hard time living in the moment because you know all of the things your child needs to do/accomplish/learn in his life. In the same breath, you don't want to think about the future because it is painful. Extremely painful.
I didn't want to think about my son being in a CBR. I didn't want him to be different.
Yesterday, my friend from the CBR did his daily morning walk and greeted AJ and I as we made our way to the car. I was sad when they took the Christmas tree down...even though it was well beyond the holiday season. I started to yearn for AJ to have the opportunity to live within the community...semi-independently. If you are thinking it is too early to be thinking about this-trust me-it is NOT.
My thoughts have changed and my heart has healed a little bit more. At this point, AJ would not be able to live in a CBR. I won't go into the reasonings, but coming to that conclusion was painful. But once it was made, a little more healing took place.
I must admit that I am struggling with juggling finishing my BA with all of AJ's needs, as well as just running the show around here. I finished my last class with a full night of tears and feeling completely overwhelmed and exhausted. I was bound to hit a wall sooner or later, right?
Yesterday morning I looked out the window and saw the leaves falling and the breeze blowing the beautiful maple tree that stands in the CBR's front yard. The presence of the CBR is my constant encouragement. While AJ is my first encouragement, the house is my second. I am not only finishing my degree for myself, but also to provide for our son. Jeremy is going for his NP to provide for us as a family and for AJ. We are planning our retirement with AJ.
So, I'm beginning this new class with my spirits lifted a bit higher, and my constant encouragement across the street. I'm doing my best to remember that this is only a season. And if life keeps flying by as fast as I feel it is, it will go faster than I think it will.
Monday, August 20, 2012
A Tender Moment
Last week I came home from my women's bible study group and knew AJ would be awake. The sitter left and I gave AJ his soft tissue massage and put him to bed. A few minutes later, I heard him crying. The kind of crying that tears your Mommy heart out. The cry that comes with sad face, pouty lip, and no sound for at least a few seconds. It is very rare for AJ to be this upset.
I turned on the light in the bathroom, which is next to his room, and went in to comfort him. I sat down next to him and rubbed his back. He calmed enough to lay down and have the covers tucked on all sides of his little body. I laid down next to him and rubbed his back. Suddenly, he cocked his head up to the side and was staring at the bathroom light through the air vent in the wall that is between the two rooms. A look of sheer terror came over his face and he started to panic and...cry. I quickly turned the light off and laid back down with him.
When we first met our little dude he was in a "bedroom" just off the baby play area in the orphanage. The room was very dim, with a very modern wood-blade fan turning slowly and the light on ultra-dim. There were bassinets lined up on all four walls.
My Mommy gut tells me that my little boy remembers. That he remembers laying in his bassinet for who knows how long waiting for someone to come and pick him up. I do my best not to think about his rough start at the orphanage, but his reaction to being in his room in darkness and seeing a soft light above him freaks him out. On another occasion we were laying on his floor with his body pillow and he looked out at the hall light-same face of sheer terror and panic. He scrambled into my lap and I rocked him. That was my first thought that he remembers.
From the very beginning I said no to the idea of putting a fan in his room. Don't get me wrong, the boy loves fans, but I could not put him in a situation that replicated his orphanage life. Even something as little as a fan triggered that desire in me. I fed him every bottle until he could hold the bottle on his own, because I know he was bottle-propped. How long did he lay there and wait? While we often mention that he couldn't, see, hear, or use his eyes together before we brought him home, he did see. This boy's visual memory is incredible.
I continued rubbing his back while he fought his tiredness. He held my right hand, I rubbed his back with my left hand. He fell asleep holding my hand and breathing peacefully. I'm forever grateful that I am able to be there for my sweet boy. While he has bonded to us amazingly well, sometimes I just think he still needs to know we're here. There was a time where he would not allow us to comfort him, so I'm thankful for this tender moment with my little man. I'm thankful he's HERE. And I'm thankful that even if he can't say Mama, he knows who his Mama is and has found my purpose in his life.
I turned on the light in the bathroom, which is next to his room, and went in to comfort him. I sat down next to him and rubbed his back. He calmed enough to lay down and have the covers tucked on all sides of his little body. I laid down next to him and rubbed his back. Suddenly, he cocked his head up to the side and was staring at the bathroom light through the air vent in the wall that is between the two rooms. A look of sheer terror came over his face and he started to panic and...cry. I quickly turned the light off and laid back down with him.
When we first met our little dude he was in a "bedroom" just off the baby play area in the orphanage. The room was very dim, with a very modern wood-blade fan turning slowly and the light on ultra-dim. There were bassinets lined up on all four walls.
My Mommy gut tells me that my little boy remembers. That he remembers laying in his bassinet for who knows how long waiting for someone to come and pick him up. I do my best not to think about his rough start at the orphanage, but his reaction to being in his room in darkness and seeing a soft light above him freaks him out. On another occasion we were laying on his floor with his body pillow and he looked out at the hall light-same face of sheer terror and panic. He scrambled into my lap and I rocked him. That was my first thought that he remembers.
From the very beginning I said no to the idea of putting a fan in his room. Don't get me wrong, the boy loves fans, but I could not put him in a situation that replicated his orphanage life. Even something as little as a fan triggered that desire in me. I fed him every bottle until he could hold the bottle on his own, because I know he was bottle-propped. How long did he lay there and wait? While we often mention that he couldn't, see, hear, or use his eyes together before we brought him home, he did see. This boy's visual memory is incredible.
I continued rubbing his back while he fought his tiredness. He held my right hand, I rubbed his back with my left hand. He fell asleep holding my hand and breathing peacefully. I'm forever grateful that I am able to be there for my sweet boy. While he has bonded to us amazingly well, sometimes I just think he still needs to know we're here. There was a time where he would not allow us to comfort him, so I'm thankful for this tender moment with my little man. I'm thankful he's HERE. And I'm thankful that even if he can't say Mama, he knows who his Mama is and has found my purpose in his life.
Thursday, August 16, 2012
The Motherload of Updates
To My Faithful Readers,
Oh what a summer it has been. Correction-oh what a spring and summer it has been. I've had an outline of things to blog about on the inside of my calendar for months-does that count? Good intentions, always. Here goes...
April
-During a regular PT session, AJ's physical therapist made the decision to discharge him. Yes, he's doing that WELL. We were able to use physical therapy to reverse his functional scoliosis. "Heidi, you did this on your own. You don't need me anymore!" Looking back I am a bit relieved decided this during that session. I think stating something to the idea of "Ok, four more sessions and then I'll be discharging him" would have ripped my heart out. I've blogged about his PT's awesomeness many times before. The idea of her not being AJ's PT was completely foreign to me. I spent the last 10 minutes of his session in complete shock. That shock continued as we walked to the car. I closed my door-and bawled. I just could not believe we were done. I never saw a tangible end to his physical therapy. It because part of our life-his PT became part of our family. It just never occurred me to me, yet here we were. Almost five years of therapy and he's just suddenly done. Never fear, his therapist did not get off easy. I still sent her regular emails and questions as needed. {Secretly she loves it!}
-AJ had a follow-up at the dental clinic. He was diagnosed with enamel hypoplasia. The enamel on his teeth did not develop correctly. It is hard, but thin and is not enough. This is due to his prematurity, low birth weight, early malnutrition, and most likely is hereditary. What does this mean? We need to brush his teeth as much as we can. Its a good thing he loves brushing his teeth! His overbite is at 10% which isn't too bad for a kid that still finds an immense amount of comfort in his thumb. He's pretty good about it during the day now, but at night that what he goes too. He's still young enough that as his big boy teeth come in they will self-correct.
-AJ started his hippotherapy (horse riding therapy) back up again at the end of April. His face was priceless as we pulled into the driveway. This kid has got a memory like his momma. At least a visual memory, that is. He's once again riding the pony, Chubbs. It is amazing to see how much he has grown and how different he looks on the horse. During his sessions he often rotates between sitting forward and backward on the horse. The change in his posture is remarkable when he's backwards. This is because he is sitting on the horse's withers (sort of like shoulder blades) which gently force him to sit upright and hold his posture. Horses are awesome. His riding center added some new fun things to the arena this year. AJ really like the hanging pool noodles that they walk through. It's like a therapy car wash.
May
-My mom and I went on a weekend getaway to Lake Geneva. Oh how I love me some girlie time. We shopped, drank wine, ate yummy food, and spent some awesome mother-daughter time together.
-I toured a school here in the area strictly for special needs children. I had gone into the tour with the idea that perhaps it would be appropriate for AJ someday. It is most certainly not appropriate for him. While I have no desire to discredit the school, my ideas for my son's education are very different from the environment I saw. Then it hit me-perhaps my purpose for touring this school was not to see it as an option for AJ, but to realize how well he truly is doing in his current environment. Sometimes it takes some outside perspective to grasp what you really need to know. I ran into a TOD that was part of AJ's initial IEP team. It's been years since I've seen her but she remembered me and of course AJ. That little boy touches more people than I ever thought possible.
-We had AJ's IEP meeting in May. Each year the group gets larger and the space we need changes. This time, we had 16 people with four tables. The plan we have in place for this next year was developed from last year's confusion. I suppose that is the best way to phrase that. His kindergarten year was rough. We are using what we learned from last year to make this year much more fluid for both AJ and his staff. AJ will be in 1st grade in just 3 weeks. Whoa. He'll attend school for 6 hours a day and continue receiving the following services: Special Education, Teacher of the Deaf, Auditory Therapy, Speech Therapy, Physical Therapy, Occupational Therapy, Specially Designed Physical Education, and one-on-one assistance.
-In addition to AJ's IEP, we formulated a FBA and FBP. No, I did not misspell FBI. A Functional Behavior Assessment was drawn up, from which we drafted a Function Behavior Plan. AJ had quite a few aggressive behaviors at school in the last few months. As with anything AJ, his reasoning for behavior is not based solely on one thing. The staff has struggled with him to keep his implants on, becoming extremely aggressive when they attempt to get him all together again. He was aggressive during his bathroom routine. Behaviors included biting, graded scratching, and pinching. Many things with AJ are a mystery or guessing game. The question I dread, why is he doing that? I feel like I am supposed to have the exact answer, and I don't. It is definitely behavior, but also communicating frustration, anger, etc. The more you fight him, the more he fights back and wants the attention. It doesn't matter if its positive or negative. We are squeak toys. I'll get to the squeak toys later. The FBP already needs to be changed. We'll be working on that as we begin the school year.
-AJ had another emc3 (Every Move Counts, Clicks, and Chats) evaluation in May. This is the first time an evaluation has been repeated on a student, so the fantastic special education teacher that consults on AJ's team was thrilled to do a follow-up evaluation. AJ did well throughout the evaluation, which we were able to see via a video of the session. Most of his reactions were congruent with his 2010 evaluation. The one section of the evaluation that stood out-Olfactory. AJ's response to lavender was mind-blowing. It calms him immediately. We are excited to use this evaluation, in addition to the knowledge we gathered for last year to form a functional day of school for him.
-AJ saw his physical medicine doctor in late May. This is the first time in a while that we've seen her and haven't done botox. He didn't need it. She asked for a follow-up in 3 months, so we will see her this month (August). AJ has had his night splint for a while now and will not sleep with it on. Correction-would not sleep with it on. She suggested we have him wear it during dinner, tv time, and other periods of down time, just to give him a good stretch. He's been doing very well with it. The splint keeps his leg/foot at a 90 degree angle and is hinged so we can decrease the angle to create more of a stretch.
-AJ had another change in his cochlear implant mapping. He struggles wearing them bilaterally. At this time, he didn't fight me when I put on his implants-but he fought everyone else on the planet.
-We celebrated AJ's 3rd Hearing Birthday!!!
-AJ had a slew of appointments at the Children's Development Center. We had initially wanted to have him tested for autism and Angelman's syndrome. This effort turned into the "Lexus" of workups and included individual evaluations from a development specialist, psychologist, and Speech & Language Pathologist. These evaluations were spread out over the month of May. I've never had reports sent to me so fast. I love that. In mid-June we met as a whole team. The following things were determined:
AJ is a calm, easy going child
AJ does not have autism
AJ does not have Angelman's syndrome and was already tested for it in a genetics test we did a few years ago
AJ had intra-uterine growth retardation. Meaning, his birth-mother's pregnancy started off on the wrong foot from the get-go. Add that to the lack of oxygen at birth and you have an AJ. The information given to us in his referral, estimated 4-6 weeks premature, is correct.
AJ's cognitive level is at a 2 year old level.
AJ's language level is at 3-6 months for expressive and 6-9 months for receptive
AJ very likely has speech and language disorders underneath everything else he has going on
AJ is ready to take it to the next level with his learning skills
AJ's behaviors are to get our attention. We are the squeak toys. He does something, we react. Repeat, repeat, repeat. The behavior should be ignored.
AJ is not in a plateau, and there is no reason to think he will. His brain is moving at its own pace.
If AJ's cognitive ability is at 2 years of age, I'm sure this has added to his struggles at school. What two year old goes to school all day?
AJ's brain and auditory memory may not interpret the information he's given through his cochlear implants.
AJ's difficulty at having "all systems go" prevents him from accessing the world as you and I do.
AJ is a special needs child, and will remain a special needs child.
-AJ lost his first tooth! He lost the bottom front right tooth. It was wiggly for a while, but then all of a sudden my mom noticed it missing as she was rolling him on the ball! We never did find it. My assumption is that he swallowed it.
-I received a call from the PE teacher one afternoon regarding AJ. He had been nominated for a scholarship award. A fellow Mom nominated AJ for the S.J.C Scholarship. S.J.C. was a teacher who taught at AJ's school for many years who passed a few years ago. His family setup a scholarship fund in his name, just as he had requested. Each year this award is handed out to a student with exceptional needs. This year, AJ was chosen. He received $250 to use toward whatever therapies or equipment AJ needs. We dedicated these funds to his hippotherapy. I had the pleasure of meeting S.J.C.'s brother and shared AJ's full-story with him. We are so grateful for the C family's generosity. I'm anxious to see AJ's name added to the plaque that hangs in the front entrance of the school. What an amazing gift for our kiddo.
June
-Through a chain of incredible events and meeting some incredible people, I've been given an amazing opportunity. I was asked to be a District Parent Liaison for our school district. I cannot tell you how excited I am about this! This fall will be jam-packed full of trainings, but I am so looking forward to it. Currently there is one liaison for our district..I just so happen to know her. Well. I'm excited to partner with her...and lighten her load! I'll be helping families advocate for their children! What could be better than that!!
-AJ graduated Kindergarten. Oh my cuteness. School had a cute little graduation ceremony and a song presentation by the kids. It's so amazing to watch them all grow each year. One of AJ's little lady friends helped him "cross the bridge" from kindergarten to 1st grade. It was adorable. And, as it turns out-she's adopted from Guatemala too. It's a small world people.
-We had a family reunion of sorts at a lake resort Jeremy and his family used to go to multiple times a year. It was a great weekend and celebrated the lives of those in his family that we've lost. AJ fell in love with the lake and was not too disappointed with the playground right across from our cottage.
-We celebrated out 11th wedding anniversary!
-A while ago AJ's pediatrician suggested we see a dermatologist to check out the scarring on the back of his head. As AJ grows, we've become concerned as to whether it will "stretch" with his head growth or who knows what else might happen to it. So, we added a dermatologist to AJ's repertoire of providers. I've always been mighty curious as to what the little bumps are on his legs. Something only a mom would notice, but still. He did have scabies when he was at the orphanage (I know, ewww) so I thought it was slight scarring from that. The dermatologist could not determine what caused the scar on his head. She was however concerned about whether or not a foreign matter was under the skin as the scar is very thick. She took a photo to consult with her colleagues and then requested an MRI. Here we go with the "He can't have an MRI because he has cochlear implants" speech. She was very understanding and requested that we have the results of his original MRI and CT scans sent to her. No one knows what the scar is. His MRI showed no foreign matter under the scar. All good news right? She referred us to the skin surgeon for a consult.
When she looked at his legs, she told me it was not from scabies. AJ was diagnosed with keratosis pilaris. The little bumps are due to clogged hair follicles. You can read more on the condition by clicking above. While this is common, AJ seemed rather irritated with his skin and scratched at times. His skin gets dry very quickly. He has it mostly on his upper arms, his thighs, and his legs. We switched to FREE products, meaning nothing with fragrance or dyes, etc. Laundry detergent, dryer sheets, lotion, etc. WHAT A DIFFERENCE it has made. It has made a huge difference for our little guy. I'm so relieved.
-AJ's ESY (summer school) staff was trained on his iPad and did a fantastic job during his 6 weeks of summer school. AJ really did well. Not only do I attribute that to his rock star staff, but also to the quiet, distraction-free environment he was learning in.
-My mom moved closer to us in June. Oh how we love having her closer! She's truly been a blessing to our family. I love that can just pop over and not drive a half hour. It's great!
-AJ turned 6 at the end of June. SIX. SEIS. OLD. We had a Route 66 themed party for him. I usually try to think of something AJ enjoys. Since he can't tell me what he'd like and doesn't understand the concept of birthdays yet, I think about what he loves to do, what he likes to play with, etc. He loves car rides, so Route 66 seemed perfect! In place of gifts for AJ, we asked guests to bring a baby item as a donation for layettes that a local non-profit puts together for expectant mothers. We were so excited and grateful for every one's generosity! Lots and lots of new moms and their babies will be well-stocked!!
-We put up a small (just less than 3 foot) pool in our yard. Oh what a good idea! No, I'm serious. AJ absolutely loves it. In fact, he learned to hold his breath under water. He can hold it for 10 seconds. This kid is going to be in the Special Olympics for swimming. I am so not kidding. The local Y where we hold a membership is quite a drive from here. It also makes me uncomfortable that they've had several cases of pertussis and whooping cough there in recent months. We're looking at other options for AJ to continue swimming in the colder months. Water does wonders for him!
-Jeremy was accepted in the University of Cinncinati's Family Nurse Practioner program! He'll be starting in January and is super excited! He's been out of school for 17 months so he's chompin' at the bit get back into the groove. By the way, its an online program with clinicals locally. We are not moving to Ohio. Nuh uh.
July
-Jeremy had a chance to sneak away to Oshkosh, Wisconsin for Lifest 2012. It was an incredible experience. Lifest is a Christian music festival. They had a grandstand and other smaller stages in the biggest park I've ever seen. We took out our folding chairs and sat and listened to music at the grandstand most of the days. At night we made a habit of going to one of the tents for the late acts. We had a fabulous time. Hearing the first few notes of "I Will Be Here" by Steven Curtis Chapman was amazing. Two friends of mine sang that song at our wedding. Jeremy and I danced in the middle of the aisle. Forget that there were 10,000 people sitting around us. I bawled. Uncontrollably. Therefore, confusing my husband-to him crying means you are sad. I was not sad, not in the least. My mind became a Rolodex of memories of our life together. We've been together 15 years. That is a lonnnng time. I was so proud of what we've become and how we have not only survived, but thrived. We'll definitely be going again next year.
August
-We took a trip to Iowa to visit Jeremy's parents. AJ experienced cotton candy for the first time, and went on his first real ride. Let me tell you, the Berry Go Round is nothing like the Tilt o' Whirl we had growing up! AJ was neutral about the ride, which really surprised me. We were just excited that he was tall enough this year to ride a ride.
-AJ was finally granted speech (feeding) therapy visits as well as occupational therapy. We have 12 sessions to squeeze into the remaining of August. Ufta! Feeding wise AJ has regressed a bit. He wants to claw everything and chooses not to use his spoon or fork. Because his cerebral palsy affects his left side, you would think the left side of his mouth would be weak also. Not so. The right side of his mouth is weak, where the left is his strong side. The body is a mysterious thing. He chooses to place things with his fingers and move them from side to side with his fingers vs. actually using his tongue to manipulate the foods. He's craving oral stimulation constantly. We've introduced harder items to him, such as the P chew, harder versions of thera-tubing, and theraband. His z-vibe broke and I'm anxious to get his new one. So much of his organization comes from oral awareness.
-AJ's been having gihugic (I love cooky words) growth spurts throughout the summer. I felt the need to schedule a "check-in" with his physical therapist. She said he looks really good, is fully mobile, and is self-correcting. Music to my ears. His left foot is turning in considerably, but not from his hip like it usually does. He's turning in from his tibia down. We're taping his foot with Kinescio tape. All the years we've used Kinescio, we've never taped his foot with it, so I wasn't sure how to do it. What a difference it makes. I also fixed his left shoe, which has Velcro that doesn't get along with his AFO orthotic. It constantly kept coming loose. I attached some extra Velcro, one sticky and one soft strip, to the existing Velcro strap on the shoe and presto! It worked like a charm. Because he wears orthotics, he looses out on the natural sensory input your foot has when you walk. Ok, to keep his foot straight and maintain balance, we take away some sensory. Such is life. Back to his PT's thoughts, she literally looked at me and said, "Why are you here? He's doing fantastic. And I am not taking him back on my service." Ok then. She calmed my fears, as always. In order to keep avoiding surgery, which is always our goal, we are doing soft tissue massage on his calf muscles and his foot especially. His plantar fascia is very active. We also do the foot wiggle, which consists of holding the sides of his foot and, wiggling rapidly.
-We had a playset built in our yard for the big boy himself. The look on his face when he saw it was PRICELESS. We added a rock climbing ramp to provide nature physical therapy. We are sneaky parents like that. He's going down the slide himself, which gets quite a bit of speed! He climbs up and down the ladder on his own and balances himself on the swings like a pro. He's an amazing little man. Having the set in our yard also helps keep him occupied. Since he's not the kid who will watch a tv show or sit and read and pretend play, this gives him something to focus on AND enjoy. We love it!
-I'm still taking courses to earn my BA in English. I'm 15 classes into my program. My original date of graduation was September 2013, but now it is December 2013. I had to add two classes to my schedule to fulfill the program requirements. I had to get to a certain point of the program to choose the classes I wanted to take. Summer has proved to be quite difficult trying to balance having AJ home and doing course work. Steady wins the race, right?
-AJ had a petit mal seizure last week after waking up from school. While my intial "in the moment" reactions to them are improving (which-I'm not sure if that is a good or bad thing) the after effect is what drains me. We went to a concert that night and I was just drained. Having fun? Sure. But if you looked at me I looked bored out my gourd. All in all, he's been doing well. He does have clusters of absent seizures, and I think he knows when they are coming on. Sometimes he's upset about it, other times he just comes back like flipping a switch. His little sad face is so heartbreaking. Buddy, if I could make them go away, I would. Believe me.
-AJ qualified for Family Support Program funds again this year. I made our home study visit appointment this week and am preparing everything we'll need to submit. We always seem to qualify when changes are about to be made. I'm not sure how we do that. Our plan is to have sidewalk in front of the house redone and widened a bit. New regulations regarding what the program will pay for are coming down from the state level. Our coordinator advised us to gather as much information as possible to "prove" that AJ needs this walkway. Despite this, we are ever grateful that he qualified for funding again.
-AJ continues to use his iPad for communication. Two weeks ago we had his iPad in church and he kept hitting the home button to exit from the menu or app that was up and clearly he didn't care for. Jeremy and I were thrilled! He shocked me when we were in Iowa by turning it on with the home button all by himself!! Wahoo! We have specific goals in his IEP related to his iPad and he just aced one of them! During summer school AJ was asked to listen to a musical instrument and then choose from three images of the instruments on his iPad. This little boy amazes me.
The SLP that evaluated him at the development center suggested using ABA flash card apps. AJ learns best by rote practice and let me tell you, these apps are awesome. There are different categories, such as emotions, foods, sports, actions, vehicles, animals, etc. She also gave me a mega list of apps that she a colleague put together, as well as a list the center hands out. One of these days I will dedicate a post to the 'ol iPad and all its awesomeness.
-A friend told me about the COOLEST APP EVER. Ok, maybe not the coolest, but it sure is informative for Jeremy and I as non-cochlear implant users. There are several apps that have a dB meter. Yes, I know this is awesome. The app is Decibel 10. I am seriously disturbed by how loud our world is. Despite this, I find this app amazingly helpful. AJ has been having a seriously hard time with his cochlear implants. This app is helping immensely as I can identify what range of sound bothers him and what he can tolerate. I'm anxious to take it to school and use the app in the school environment.
-Jeremy and I participated in our church's Believer's Baptism in the lake. What.An.Incredible.Experience. I really don't have words other than it was an amazing experience and I am so grateful we made the decision to be baptized.
-I've been participating in a women's bible study. The study is appropriately called "Stuck". The ladies in my group are all amazing women. Next week is our last week and I am incredibly sad that we won't be meeting anymore. We've followed this study and I've become a new woman because of it. Truly. As much as I am looking forward to meeting other peeps with the fall groups form, I am sad. Each week we've done a "Chica of the Week". Each of us writes a prayer request and we pick cards from a basket. You are to encourage and pray for your chica that week. I absolutely love this idea. I love sending encouragement and well wishes to my chica, and love receiving prayers and encouragement from whomever has me as their chica that week. Sigh. What I learned? I am not alone in my place of stuck.
-AJ is scheduled for a follow-up with his physical medicine doctor, a cochlear implant mapping, and an appt with his neurolgist within the next two weeks. He is also scheduled for a genetics consult and a consult with the skin surgeon regarding his head scar.
Is that it? I think so. All in all, AJ is doing great. Thanks for checking in here on the 'ol blog. She won't be neglected anymore. Promise. Ok, I promise I'll try.
Oh what a summer it has been. Correction-oh what a spring and summer it has been. I've had an outline of things to blog about on the inside of my calendar for months-does that count? Good intentions, always. Here goes...
April
-During a regular PT session, AJ's physical therapist made the decision to discharge him. Yes, he's doing that WELL. We were able to use physical therapy to reverse his functional scoliosis. "Heidi, you did this on your own. You don't need me anymore!" Looking back I am a bit relieved decided this during that session. I think stating something to the idea of "Ok, four more sessions and then I'll be discharging him" would have ripped my heart out. I've blogged about his PT's awesomeness many times before. The idea of her not being AJ's PT was completely foreign to me. I spent the last 10 minutes of his session in complete shock. That shock continued as we walked to the car. I closed my door-and bawled. I just could not believe we were done. I never saw a tangible end to his physical therapy. It because part of our life-his PT became part of our family. It just never occurred me to me, yet here we were. Almost five years of therapy and he's just suddenly done. Never fear, his therapist did not get off easy. I still sent her regular emails and questions as needed. {Secretly she loves it!}
-AJ had a follow-up at the dental clinic. He was diagnosed with enamel hypoplasia. The enamel on his teeth did not develop correctly. It is hard, but thin and is not enough. This is due to his prematurity, low birth weight, early malnutrition, and most likely is hereditary. What does this mean? We need to brush his teeth as much as we can. Its a good thing he loves brushing his teeth! His overbite is at 10% which isn't too bad for a kid that still finds an immense amount of comfort in his thumb. He's pretty good about it during the day now, but at night that what he goes too. He's still young enough that as his big boy teeth come in they will self-correct.
-AJ started his hippotherapy (horse riding therapy) back up again at the end of April. His face was priceless as we pulled into the driveway. This kid has got a memory like his momma. At least a visual memory, that is. He's once again riding the pony, Chubbs. It is amazing to see how much he has grown and how different he looks on the horse. During his sessions he often rotates between sitting forward and backward on the horse. The change in his posture is remarkable when he's backwards. This is because he is sitting on the horse's withers (sort of like shoulder blades) which gently force him to sit upright and hold his posture. Horses are awesome. His riding center added some new fun things to the arena this year. AJ really like the hanging pool noodles that they walk through. It's like a therapy car wash.
May
-My mom and I went on a weekend getaway to Lake Geneva. Oh how I love me some girlie time. We shopped, drank wine, ate yummy food, and spent some awesome mother-daughter time together.
-I toured a school here in the area strictly for special needs children. I had gone into the tour with the idea that perhaps it would be appropriate for AJ someday. It is most certainly not appropriate for him. While I have no desire to discredit the school, my ideas for my son's education are very different from the environment I saw. Then it hit me-perhaps my purpose for touring this school was not to see it as an option for AJ, but to realize how well he truly is doing in his current environment. Sometimes it takes some outside perspective to grasp what you really need to know. I ran into a TOD that was part of AJ's initial IEP team. It's been years since I've seen her but she remembered me and of course AJ. That little boy touches more people than I ever thought possible.
-We had AJ's IEP meeting in May. Each year the group gets larger and the space we need changes. This time, we had 16 people with four tables. The plan we have in place for this next year was developed from last year's confusion. I suppose that is the best way to phrase that. His kindergarten year was rough. We are using what we learned from last year to make this year much more fluid for both AJ and his staff. AJ will be in 1st grade in just 3 weeks. Whoa. He'll attend school for 6 hours a day and continue receiving the following services: Special Education, Teacher of the Deaf, Auditory Therapy, Speech Therapy, Physical Therapy, Occupational Therapy, Specially Designed Physical Education, and one-on-one assistance.
-In addition to AJ's IEP, we formulated a FBA and FBP. No, I did not misspell FBI. A Functional Behavior Assessment was drawn up, from which we drafted a Function Behavior Plan. AJ had quite a few aggressive behaviors at school in the last few months. As with anything AJ, his reasoning for behavior is not based solely on one thing. The staff has struggled with him to keep his implants on, becoming extremely aggressive when they attempt to get him all together again. He was aggressive during his bathroom routine. Behaviors included biting, graded scratching, and pinching. Many things with AJ are a mystery or guessing game. The question I dread, why is he doing that? I feel like I am supposed to have the exact answer, and I don't. It is definitely behavior, but also communicating frustration, anger, etc. The more you fight him, the more he fights back and wants the attention. It doesn't matter if its positive or negative. We are squeak toys. I'll get to the squeak toys later. The FBP already needs to be changed. We'll be working on that as we begin the school year.
-AJ had another emc3 (Every Move Counts, Clicks, and Chats) evaluation in May. This is the first time an evaluation has been repeated on a student, so the fantastic special education teacher that consults on AJ's team was thrilled to do a follow-up evaluation. AJ did well throughout the evaluation, which we were able to see via a video of the session. Most of his reactions were congruent with his 2010 evaluation. The one section of the evaluation that stood out-Olfactory. AJ's response to lavender was mind-blowing. It calms him immediately. We are excited to use this evaluation, in addition to the knowledge we gathered for last year to form a functional day of school for him.
-AJ saw his physical medicine doctor in late May. This is the first time in a while that we've seen her and haven't done botox. He didn't need it. She asked for a follow-up in 3 months, so we will see her this month (August). AJ has had his night splint for a while now and will not sleep with it on. Correction-would not sleep with it on. She suggested we have him wear it during dinner, tv time, and other periods of down time, just to give him a good stretch. He's been doing very well with it. The splint keeps his leg/foot at a 90 degree angle and is hinged so we can decrease the angle to create more of a stretch.
-AJ had another change in his cochlear implant mapping. He struggles wearing them bilaterally. At this time, he didn't fight me when I put on his implants-but he fought everyone else on the planet.
-We celebrated AJ's 3rd Hearing Birthday!!!
-AJ had a slew of appointments at the Children's Development Center. We had initially wanted to have him tested for autism and Angelman's syndrome. This effort turned into the "Lexus" of workups and included individual evaluations from a development specialist, psychologist, and Speech & Language Pathologist. These evaluations were spread out over the month of May. I've never had reports sent to me so fast. I love that. In mid-June we met as a whole team. The following things were determined:
AJ is a calm, easy going child
AJ does not have autism
AJ does not have Angelman's syndrome and was already tested for it in a genetics test we did a few years ago
AJ had intra-uterine growth retardation. Meaning, his birth-mother's pregnancy started off on the wrong foot from the get-go. Add that to the lack of oxygen at birth and you have an AJ. The information given to us in his referral, estimated 4-6 weeks premature, is correct.
AJ's cognitive level is at a 2 year old level.
AJ's language level is at 3-6 months for expressive and 6-9 months for receptive
AJ very likely has speech and language disorders underneath everything else he has going on
AJ is ready to take it to the next level with his learning skills
AJ's behaviors are to get our attention. We are the squeak toys. He does something, we react. Repeat, repeat, repeat. The behavior should be ignored.
AJ is not in a plateau, and there is no reason to think he will. His brain is moving at its own pace.
If AJ's cognitive ability is at 2 years of age, I'm sure this has added to his struggles at school. What two year old goes to school all day?
AJ's brain and auditory memory may not interpret the information he's given through his cochlear implants.
AJ's difficulty at having "all systems go" prevents him from accessing the world as you and I do.
AJ is a special needs child, and will remain a special needs child.
-AJ lost his first tooth! He lost the bottom front right tooth. It was wiggly for a while, but then all of a sudden my mom noticed it missing as she was rolling him on the ball! We never did find it. My assumption is that he swallowed it.
-I received a call from the PE teacher one afternoon regarding AJ. He had been nominated for a scholarship award. A fellow Mom nominated AJ for the S.J.C Scholarship. S.J.C. was a teacher who taught at AJ's school for many years who passed a few years ago. His family setup a scholarship fund in his name, just as he had requested. Each year this award is handed out to a student with exceptional needs. This year, AJ was chosen. He received $250 to use toward whatever therapies or equipment AJ needs. We dedicated these funds to his hippotherapy. I had the pleasure of meeting S.J.C.'s brother and shared AJ's full-story with him. We are so grateful for the C family's generosity. I'm anxious to see AJ's name added to the plaque that hangs in the front entrance of the school. What an amazing gift for our kiddo.
June
-Through a chain of incredible events and meeting some incredible people, I've been given an amazing opportunity. I was asked to be a District Parent Liaison for our school district. I cannot tell you how excited I am about this! This fall will be jam-packed full of trainings, but I am so looking forward to it. Currently there is one liaison for our district..I just so happen to know her. Well. I'm excited to partner with her...and lighten her load! I'll be helping families advocate for their children! What could be better than that!!
-AJ graduated Kindergarten. Oh my cuteness. School had a cute little graduation ceremony and a song presentation by the kids. It's so amazing to watch them all grow each year. One of AJ's little lady friends helped him "cross the bridge" from kindergarten to 1st grade. It was adorable. And, as it turns out-she's adopted from Guatemala too. It's a small world people.
-We had a family reunion of sorts at a lake resort Jeremy and his family used to go to multiple times a year. It was a great weekend and celebrated the lives of those in his family that we've lost. AJ fell in love with the lake and was not too disappointed with the playground right across from our cottage.
-We celebrated out 11th wedding anniversary!
-A while ago AJ's pediatrician suggested we see a dermatologist to check out the scarring on the back of his head. As AJ grows, we've become concerned as to whether it will "stretch" with his head growth or who knows what else might happen to it. So, we added a dermatologist to AJ's repertoire of providers. I've always been mighty curious as to what the little bumps are on his legs. Something only a mom would notice, but still. He did have scabies when he was at the orphanage (I know, ewww) so I thought it was slight scarring from that. The dermatologist could not determine what caused the scar on his head. She was however concerned about whether or not a foreign matter was under the skin as the scar is very thick. She took a photo to consult with her colleagues and then requested an MRI. Here we go with the "He can't have an MRI because he has cochlear implants" speech. She was very understanding and requested that we have the results of his original MRI and CT scans sent to her. No one knows what the scar is. His MRI showed no foreign matter under the scar. All good news right? She referred us to the skin surgeon for a consult.
When she looked at his legs, she told me it was not from scabies. AJ was diagnosed with keratosis pilaris. The little bumps are due to clogged hair follicles. You can read more on the condition by clicking above. While this is common, AJ seemed rather irritated with his skin and scratched at times. His skin gets dry very quickly. He has it mostly on his upper arms, his thighs, and his legs. We switched to FREE products, meaning nothing with fragrance or dyes, etc. Laundry detergent, dryer sheets, lotion, etc. WHAT A DIFFERENCE it has made. It has made a huge difference for our little guy. I'm so relieved.
-AJ's ESY (summer school) staff was trained on his iPad and did a fantastic job during his 6 weeks of summer school. AJ really did well. Not only do I attribute that to his rock star staff, but also to the quiet, distraction-free environment he was learning in.
-My mom moved closer to us in June. Oh how we love having her closer! She's truly been a blessing to our family. I love that can just pop over and not drive a half hour. It's great!
-AJ turned 6 at the end of June. SIX. SEIS. OLD. We had a Route 66 themed party for him. I usually try to think of something AJ enjoys. Since he can't tell me what he'd like and doesn't understand the concept of birthdays yet, I think about what he loves to do, what he likes to play with, etc. He loves car rides, so Route 66 seemed perfect! In place of gifts for AJ, we asked guests to bring a baby item as a donation for layettes that a local non-profit puts together for expectant mothers. We were so excited and grateful for every one's generosity! Lots and lots of new moms and their babies will be well-stocked!!
-We put up a small (just less than 3 foot) pool in our yard. Oh what a good idea! No, I'm serious. AJ absolutely loves it. In fact, he learned to hold his breath under water. He can hold it for 10 seconds. This kid is going to be in the Special Olympics for swimming. I am so not kidding. The local Y where we hold a membership is quite a drive from here. It also makes me uncomfortable that they've had several cases of pertussis and whooping cough there in recent months. We're looking at other options for AJ to continue swimming in the colder months. Water does wonders for him!
-Jeremy was accepted in the University of Cinncinati's Family Nurse Practioner program! He'll be starting in January and is super excited! He's been out of school for 17 months so he's chompin' at the bit get back into the groove. By the way, its an online program with clinicals locally. We are not moving to Ohio. Nuh uh.
July
-Jeremy had a chance to sneak away to Oshkosh, Wisconsin for Lifest 2012. It was an incredible experience. Lifest is a Christian music festival. They had a grandstand and other smaller stages in the biggest park I've ever seen. We took out our folding chairs and sat and listened to music at the grandstand most of the days. At night we made a habit of going to one of the tents for the late acts. We had a fabulous time. Hearing the first few notes of "I Will Be Here" by Steven Curtis Chapman was amazing. Two friends of mine sang that song at our wedding. Jeremy and I danced in the middle of the aisle. Forget that there were 10,000 people sitting around us. I bawled. Uncontrollably. Therefore, confusing my husband-to him crying means you are sad. I was not sad, not in the least. My mind became a Rolodex of memories of our life together. We've been together 15 years. That is a lonnnng time. I was so proud of what we've become and how we have not only survived, but thrived. We'll definitely be going again next year.
August
-We took a trip to Iowa to visit Jeremy's parents. AJ experienced cotton candy for the first time, and went on his first real ride. Let me tell you, the Berry Go Round is nothing like the Tilt o' Whirl we had growing up! AJ was neutral about the ride, which really surprised me. We were just excited that he was tall enough this year to ride a ride.
-AJ was finally granted speech (feeding) therapy visits as well as occupational therapy. We have 12 sessions to squeeze into the remaining of August. Ufta! Feeding wise AJ has regressed a bit. He wants to claw everything and chooses not to use his spoon or fork. Because his cerebral palsy affects his left side, you would think the left side of his mouth would be weak also. Not so. The right side of his mouth is weak, where the left is his strong side. The body is a mysterious thing. He chooses to place things with his fingers and move them from side to side with his fingers vs. actually using his tongue to manipulate the foods. He's craving oral stimulation constantly. We've introduced harder items to him, such as the P chew, harder versions of thera-tubing, and theraband. His z-vibe broke and I'm anxious to get his new one. So much of his organization comes from oral awareness.
-AJ's been having gihugic (I love cooky words) growth spurts throughout the summer. I felt the need to schedule a "check-in" with his physical therapist. She said he looks really good, is fully mobile, and is self-correcting. Music to my ears. His left foot is turning in considerably, but not from his hip like it usually does. He's turning in from his tibia down. We're taping his foot with Kinescio tape. All the years we've used Kinescio, we've never taped his foot with it, so I wasn't sure how to do it. What a difference it makes. I also fixed his left shoe, which has Velcro that doesn't get along with his AFO orthotic. It constantly kept coming loose. I attached some extra Velcro, one sticky and one soft strip, to the existing Velcro strap on the shoe and presto! It worked like a charm. Because he wears orthotics, he looses out on the natural sensory input your foot has when you walk. Ok, to keep his foot straight and maintain balance, we take away some sensory. Such is life. Back to his PT's thoughts, she literally looked at me and said, "Why are you here? He's doing fantastic. And I am not taking him back on my service." Ok then. She calmed my fears, as always. In order to keep avoiding surgery, which is always our goal, we are doing soft tissue massage on his calf muscles and his foot especially. His plantar fascia is very active. We also do the foot wiggle, which consists of holding the sides of his foot and, wiggling rapidly.
-We had a playset built in our yard for the big boy himself. The look on his face when he saw it was PRICELESS. We added a rock climbing ramp to provide nature physical therapy. We are sneaky parents like that. He's going down the slide himself, which gets quite a bit of speed! He climbs up and down the ladder on his own and balances himself on the swings like a pro. He's an amazing little man. Having the set in our yard also helps keep him occupied. Since he's not the kid who will watch a tv show or sit and read and pretend play, this gives him something to focus on AND enjoy. We love it!
-I'm still taking courses to earn my BA in English. I'm 15 classes into my program. My original date of graduation was September 2013, but now it is December 2013. I had to add two classes to my schedule to fulfill the program requirements. I had to get to a certain point of the program to choose the classes I wanted to take. Summer has proved to be quite difficult trying to balance having AJ home and doing course work. Steady wins the race, right?
-AJ had a petit mal seizure last week after waking up from school. While my intial "in the moment" reactions to them are improving (which-I'm not sure if that is a good or bad thing) the after effect is what drains me. We went to a concert that night and I was just drained. Having fun? Sure. But if you looked at me I looked bored out my gourd. All in all, he's been doing well. He does have clusters of absent seizures, and I think he knows when they are coming on. Sometimes he's upset about it, other times he just comes back like flipping a switch. His little sad face is so heartbreaking. Buddy, if I could make them go away, I would. Believe me.
-AJ qualified for Family Support Program funds again this year. I made our home study visit appointment this week and am preparing everything we'll need to submit. We always seem to qualify when changes are about to be made. I'm not sure how we do that. Our plan is to have sidewalk in front of the house redone and widened a bit. New regulations regarding what the program will pay for are coming down from the state level. Our coordinator advised us to gather as much information as possible to "prove" that AJ needs this walkway. Despite this, we are ever grateful that he qualified for funding again.
-AJ continues to use his iPad for communication. Two weeks ago we had his iPad in church and he kept hitting the home button to exit from the menu or app that was up and clearly he didn't care for. Jeremy and I were thrilled! He shocked me when we were in Iowa by turning it on with the home button all by himself!! Wahoo! We have specific goals in his IEP related to his iPad and he just aced one of them! During summer school AJ was asked to listen to a musical instrument and then choose from three images of the instruments on his iPad. This little boy amazes me.
The SLP that evaluated him at the development center suggested using ABA flash card apps. AJ learns best by rote practice and let me tell you, these apps are awesome. There are different categories, such as emotions, foods, sports, actions, vehicles, animals, etc. She also gave me a mega list of apps that she a colleague put together, as well as a list the center hands out. One of these days I will dedicate a post to the 'ol iPad and all its awesomeness.
-A friend told me about the COOLEST APP EVER. Ok, maybe not the coolest, but it sure is informative for Jeremy and I as non-cochlear implant users. There are several apps that have a dB meter. Yes, I know this is awesome. The app is Decibel 10. I am seriously disturbed by how loud our world is. Despite this, I find this app amazingly helpful. AJ has been having a seriously hard time with his cochlear implants. This app is helping immensely as I can identify what range of sound bothers him and what he can tolerate. I'm anxious to take it to school and use the app in the school environment.
-Jeremy and I participated in our church's Believer's Baptism in the lake. What.An.Incredible.Experience. I really don't have words other than it was an amazing experience and I am so grateful we made the decision to be baptized.
-I've been participating in a women's bible study. The study is appropriately called "Stuck". The ladies in my group are all amazing women. Next week is our last week and I am incredibly sad that we won't be meeting anymore. We've followed this study and I've become a new woman because of it. Truly. As much as I am looking forward to meeting other peeps with the fall groups form, I am sad. Each week we've done a "Chica of the Week". Each of us writes a prayer request and we pick cards from a basket. You are to encourage and pray for your chica that week. I absolutely love this idea. I love sending encouragement and well wishes to my chica, and love receiving prayers and encouragement from whomever has me as their chica that week. Sigh. What I learned? I am not alone in my place of stuck.
-AJ is scheduled for a follow-up with his physical medicine doctor, a cochlear implant mapping, and an appt with his neurolgist within the next two weeks. He is also scheduled for a genetics consult and a consult with the skin surgeon regarding his head scar.
Is that it? I think so. All in all, AJ is doing great. Thanks for checking in here on the 'ol blog. She won't be neglected anymore. Promise. Ok, I promise I'll try.
Sunday, June 17, 2012
Helpless
Tonight, after Jeremy gave AJ a bath and he was snuggled in his bed, I went in his room to kiss him goodnight.
It was then that I recognized that stare. The seizure stare. I waited, and saw the drool. I dropped to the floor and watched my little boy stare into space and held his hand. This one was about a minute. A minute that felt like an eternity. I sat and cried silent tears while I watched my little boy seize. I watched him intensely waiting for my little boy to come back. And he did. With a big smile and a hug. Thank God.
Tonight is one of those nights that I feel so helpless. We do everything we can for AJ, but this is one area we simply cannot do anything for.
No mother should ever have to watch their child suffer-in any way shape or form. Watching my child seize is torture to me. Pure torture. I try my best to be strong for him and comfort him. Even if he's still, I want him to know I'm there. His seizure activity has been off and on recently. I really hope it goes off for a while.
No mother should ever have to watch their child suffer-in any way shape or form. Watching my child seize is torture to me. Pure torture. I try my best to be strong for him and comfort him. Even if he's still, I want him to know I'm there. His seizure activity has been off and on recently. I really hope it goes off for a while.
I still don't understand why AJ's epilepsy is the hardest thing for me to handle. Of all the things he has going on, I can't get over the epilepsy. I worry about more brain damage. Sometimes, I even get scared that some day the seizures will be uncontrollable and will take him from us. Tomorrow, I will call his neurologist's office. To which the nurse will talk to me for a ridiculously long amount of time and talk me through everything epilepsy. It will probably lead to another visit, a blood draw, and maybe another EEG. All of which I hate. Perhaps it won't. She'll remind me that breakthrough seizures do happen. They are controlled most of the time, but sometimes one slips through. Was he drowsy? Yes. Then you know the most common time for seizures is drowsiness and during sleep. Yes, yes I know. Is he growing? Yes, like a weed. Well, then?.... I know, I know.
I'll be checking on him a lot tonight and am already anxious for his amazing morning smile.
Saturday, June 16, 2012
Special Needs Family Support Group
A few months ago I had ants in my pants about the fact that there aren't any special needs support groups in our area. After speaking to a few different contacts in the special needs world I learned that most groups fizzled out a few years ago. Lovely. I was done searching and moved on to "Well, I start one then. So there!"
So, I contacted a friend at church and asked if we could start a group there. This is one of those moments where the stars aligned just perfectly. She told me another church member and her husband were just organizing and planning such a group.
We've been meeting for a few months now and its been absolutely wonderful. We've met some awesome people and formed some great friendships. It is the most amazing feeling when I say a phrase or acronym and do not have to explain it. To have another parent understand how a special needs bad day is different than just a bad day. To vent and have someone actually get it. We laugh, we cry, we support one another. We share resources. We opened new doors.
Did I mention how great this is?
Jer and I learned quickly that we're sort of veterans in the special needs world. While AJ is still young, we've been around the block and then some. I've said it before, but a little tiny piece of my heart heals each time I am able to use the knowledge we've gained from our experiences with AJ to help someone else.
Hooray!
So, I contacted a friend at church and asked if we could start a group there. This is one of those moments where the stars aligned just perfectly. She told me another church member and her husband were just organizing and planning such a group.
We've been meeting for a few months now and its been absolutely wonderful. We've met some awesome people and formed some great friendships. It is the most amazing feeling when I say a phrase or acronym and do not have to explain it. To have another parent understand how a special needs bad day is different than just a bad day. To vent and have someone actually get it. We laugh, we cry, we support one another. We share resources. We opened new doors.
Did I mention how great this is?
Jer and I learned quickly that we're sort of veterans in the special needs world. While AJ is still young, we've been around the block and then some. I've said it before, but a little tiny piece of my heart heals each time I am able to use the knowledge we've gained from our experiences with AJ to help someone else.
Hooray!
Subscribe to:
Posts (Atom)
