I remember the day I was told about James David's spina bifida. The Maternal Fetal Medicine doctor handed me a whole bunch of tissues, and I wiped the ultrasound goo off my stomach with them. I was given the option for medical termination and quickly turned it down. Most people would have been devastated. A disabled child? Lives changed. Dreams crushed. But I am here to spread hope to all those who fear having a paralyzed child. It's really not that bad and comes with good perks!
#1. Handicapped Parking: Don't deny it, you have so coveted the bright blue parking spots. Those days when you are 20 rows back and are sweating in the summer heat before you even reach the doors are over! No more soaking in the rain. You can now park extremely close and convenient without having to pay a $500 fine! :) Rejoice!
#2. Potty Training: Dreading it? Don't! I dreaded the days of potty training my son. Well I'm pleased to report it's probably one of the easiest things I've ever done! There were no fights about getting on the potty. There were no accidents in the corners. No bribery for poopy. It was quite simple. Step one: learn to catheterize. Step two: bowel management program. Easy as pie :) Kid goes on your schedule and when you make him. No pull-ups. BAM! You're in big boy undies over night.
#3. G-Tubes: While not everyone get's (or needs) one of these, if you find yourself in the position of needing one for your child. Don't fret, and sign the consent. Have you been worrying about what your going to fix your child for dinner? Struggling with a picky eater? Spend every single stinking meal fretting over just trying to get your little stinker to eat? Poof! You're problems are gone. Your child's meals are now planned out by a nutritionist and prepackaged in a cute calorie filled can. You can feed you child on the go or even while they sleep! Just wait! It get's even better! You know all the money you spent on your child's special food? Shut your pocketbook and go get a manicure! Insurance now pays to feed your youngster, and will even deliver their formula to your front door. That's right. Now you can shop for you!
These are just some of the perks. While you may think your life is now filled with dread, think again! It's not all bad! Believe me I know that all of the things I mentioned came with a lot of coping. There is a lot of stress and a lot of dread to get here. Worrying. Grieving. But when you sit back, after months of living it, you think, and you realize it's really not that bad! ;)
Monday, August 5, 2013
Monday, July 29, 2013
Therapy Daze...
According to the American Heritage New Dictionary of Cultural Literacy, "therapy" (n) is: a treatment intended to cure or alleviate an illness or injury, whether physical or mental.
Well let me tell you, I have a personal vendetta with therapy. Mondays just so happen to be one of our busiest therapy days, and quite frankly it's my least favorite. The reason being because I was never going to be "that mom".
Before I had James David, and even early into his little life, I had set very high (and what I had presumed at the time were very reasonable) expectations for myself as a mother. I would never be the mom that let her child...:
As an infant the slightest noise sent him into hysterics. Then he started gagging and refusing "Stage 3" baby foods. He could tolerate nothing with texture. He became terrified of all the other loud and personally invasive toddling monsters his age. I had no idea what was happening to us, but we slowly became boxed in, and I became the mother I swore I would never be.
I started doing anything I could to distract him while I shoved food into his mouth. Elmo became my new bestfriend. Then I found things he would eat on his own! They weren't vegetables... Those are crunchy and quite possibly the spawn of Satan, according to my two year old. So now his diet is filled with fillers, artificial flavorings, dyes, and God knows what else... But he's not starving.
We now can go out in public, but we avoid direct one-on-one contact with unfamiliar toddlers (especially those that take off with his wheelchair). We avoid all loud noises, and work through the meltdowns of then inescapable thunder. He next to never gets spankings, and well time-out really just results an outfit change and a scrub for the carpet (predigested hotdog is next to impossible to get out). But what does any of this have to do with my disdain for therapies???
Physical Therapy (PT) is pretty simple: Push James David as fast and as hard as he'll go, and then push him a little further (pray he doesn't throw up). I can do that.
Occupational Therapy (OT): Taught James David to play with his food... Good that he'll now touch it, unfortunately that's all he'll do with it. We learned that brushing his arms and leg (yes like a cat) helps with his meltdowns (good, but not the "dry it up" I was raised with). I don't want my son to be coddled.
Behavioral Therapy: Basically told us to ignore our son's outbursts. If he is being bad, of course punish him, but then be done with it. Don't give him attention for his meltdowns. Don't help him calm down. Let him work it out on his own so that he's not using it as a source of attention.
Feeding Therapy: We give James David four-on-one undivided attention. Praising him every single stinkin time he kisses a spoon that has a new food on it. If he takes a bite of his mac n cheese, everyone has to clap. We excessively praise him for doing the slightest new thing because what two year old doesn't want you to clap for him in the specific way he told you to clap (hands high above your head)? This is my least favorite of his therapies.
Having James David has turned not only my whole life around, but it has also changed my expectations for my personal values. I have to look at my son and not be disappointed in myself as a mother, but realize that I am doing the best I can with what I have right now. If that means letting him scream through the supermarket while I ignore the heck out of him, so be it. If I have to clap every single time he takes a bite so that he will actually learn to eat, so be it (I'm still learning to be ok with this one...) And if I have to clean up puke 3 times a day, so that maybe he will grow up learning right from wrong, so be it. Its not my dream, but it's my life. My reality.
Romans 5:3-4
Not only so, but we also rejoice in our sufferings, because we know that suffering produces perseverance; perseverance, character; and character, hope.
Well let me tell you, I have a personal vendetta with therapy. Mondays just so happen to be one of our busiest therapy days, and quite frankly it's my least favorite. The reason being because I was never going to be "that mom".
Before I had James David, and even early into his little life, I had set very high (and what I had presumed at the time were very reasonable) expectations for myself as a mother. I would never be the mom that let her child...:
- ...eat in front of the TV.
- ... live off of hotdogs and mac 'n' cheese (He would love fruits and veggies :))
- ...throw temper-tantrums in public.
- ...throw temper-tantrums period.
- ...praise him for ordinary things
- ... be a spoiled brat.
As an infant the slightest noise sent him into hysterics. Then he started gagging and refusing "Stage 3" baby foods. He could tolerate nothing with texture. He became terrified of all the other loud and personally invasive toddling monsters his age. I had no idea what was happening to us, but we slowly became boxed in, and I became the mother I swore I would never be.
I started doing anything I could to distract him while I shoved food into his mouth. Elmo became my new bestfriend. Then I found things he would eat on his own! They weren't vegetables... Those are crunchy and quite possibly the spawn of Satan, according to my two year old. So now his diet is filled with fillers, artificial flavorings, dyes, and God knows what else... But he's not starving.
We now can go out in public, but we avoid direct one-on-one contact with unfamiliar toddlers (especially those that take off with his wheelchair). We avoid all loud noises, and work through the meltdowns of then inescapable thunder. He next to never gets spankings, and well time-out really just results an outfit change and a scrub for the carpet (predigested hotdog is next to impossible to get out). But what does any of this have to do with my disdain for therapies???
Physical Therapy (PT) is pretty simple: Push James David as fast and as hard as he'll go, and then push him a little further (pray he doesn't throw up). I can do that.
Occupational Therapy (OT): Taught James David to play with his food... Good that he'll now touch it, unfortunately that's all he'll do with it. We learned that brushing his arms and leg (yes like a cat) helps with his meltdowns (good, but not the "dry it up" I was raised with). I don't want my son to be coddled.
Behavioral Therapy: Basically told us to ignore our son's outbursts. If he is being bad, of course punish him, but then be done with it. Don't give him attention for his meltdowns. Don't help him calm down. Let him work it out on his own so that he's not using it as a source of attention.
Feeding Therapy: We give James David four-on-one undivided attention. Praising him every single stinkin time he kisses a spoon that has a new food on it. If he takes a bite of his mac n cheese, everyone has to clap. We excessively praise him for doing the slightest new thing because what two year old doesn't want you to clap for him in the specific way he told you to clap (hands high above your head)? This is my least favorite of his therapies.
Having James David has turned not only my whole life around, but it has also changed my expectations for my personal values. I have to look at my son and not be disappointed in myself as a mother, but realize that I am doing the best I can with what I have right now. If that means letting him scream through the supermarket while I ignore the heck out of him, so be it. If I have to clap every single time he takes a bite so that he will actually learn to eat, so be it (I'm still learning to be ok with this one...) And if I have to clean up puke 3 times a day, so that maybe he will grow up learning right from wrong, so be it. Its not my dream, but it's my life. My reality.
Romans 5:3-4
Not only so, but we also rejoice in our sufferings, because we know that suffering produces perseverance; perseverance, character; and character, hope.
Sunday, July 28, 2013
Making a Comeback
I'm back!
I apologize for all the gaps in my blogging history. My life is less than structured, but it's getting better. I will try to keep up more consistently in the future. However, I'm not promising because I've never been one for empty promises.
Life the last few months has seemed but a fleeting moment in my life. I'm not sure where it has gone or where it is going, but I am thankful for every second of it.
James David has attended a vast magnitude of doctor appointments and therapies. We have experienced ups and downs (but much more ups :)), and he has not had a surgical procedure in 9 months now! That is a record for his not-so little head! He is my little light that keeps a smile on my face every day with his huge strength in his little body. My life would be empty without him.
Those that know me well, know that I have suffered a 7 year long battle with depression and anxiety. Like anyone, I have ups and downs. These last few months have been hard for me, but I'm turning a new corner. I am becoming more aware of myself, my consciousness, my health, and my surroundings. I am making conscious decisions to better myself and my family and, instead of floating through life, I am going to live it.
Though I'm not sure with what intentions I started this blog, unlike so many others I have started and discarded, I am publishing this one. I'm sending out word that we are still here. We are still thriving. We will not give up. :)
I apologize for all the gaps in my blogging history. My life is less than structured, but it's getting better. I will try to keep up more consistently in the future. However, I'm not promising because I've never been one for empty promises.
Life the last few months has seemed but a fleeting moment in my life. I'm not sure where it has gone or where it is going, but I am thankful for every second of it.
James David has attended a vast magnitude of doctor appointments and therapies. We have experienced ups and downs (but much more ups :)), and he has not had a surgical procedure in 9 months now! That is a record for his not-so little head! He is my little light that keeps a smile on my face every day with his huge strength in his little body. My life would be empty without him.
Those that know me well, know that I have suffered a 7 year long battle with depression and anxiety. Like anyone, I have ups and downs. These last few months have been hard for me, but I'm turning a new corner. I am becoming more aware of myself, my consciousness, my health, and my surroundings. I am making conscious decisions to better myself and my family and, instead of floating through life, I am going to live it.
Though I'm not sure with what intentions I started this blog, unlike so many others I have started and discarded, I am publishing this one. I'm sending out word that we are still here. We are still thriving. We will not give up. :)
Isaiah 40:28-31 Have
you not known? Have you not heard? The LORD is the everlasting
God, the Creator of the ends of the earth. He does not faint or grow
weary; his understanding is unsearchable. He gives power to the
faint, and to him who has no might he increases strength. Even youths
shall faint and be weary,and young men shall fall exhausted; but they
who wait for the LORD shall renew their strength; they shall mount up
with wings like eagles; they shall run and not be weary; they shall
walk and not faint.
Wednesday, April 10, 2013
Sticky Face, Sticky Nose, Sticky Boy From Head to Toes
Today was an absolutely wonderful day in James David world :)
It all began with James David's very first dentist trip. I of course being, the dunce I am, left his med port open on his gtube last night. For those of you that don't know 440 ccs of Pediasure results in a very wet, sticky, unhappy boy when he wakes up, and a very stinky mattress for mommy to try and clean up. As a result of this mishap, we arrived late to his appointment. With 3 pages of paperwork (which normally wouldn't take that long, but my son happens to have a lllooonnnggg medical history). I also happened to forget my license :) But after much ado we finally got back into the office. Surprisingly, James David did very well. They office was decorated with murals on the walls, toys everywhere, and airplanes hanging from the ceiling. It was childhood utopia. We luckily had an appointment time with older kids, so he wasn't afraid of them. His teeth look great, and the last of his two-year-old molars is coming in now. They praised me for how well I have taken care of his teeth, but to be honest, the boy just has good genetics because between feeds, meds, and caths, I'm lucky to remember to brush his teeth once a day. The real fun when it came time to leave. My son gladly watched me walk out the door without him and went right back to playing. I literally had to drag him out of the office because he wanted to stay and play all day...
After naptime this afternoon it had cooled down enough for him to go outside and play. Some of his medication causes him to overheat so we have to stay inside some days. I laid in the grass with him and we blew bubbles for about an hour, and it was pure bliss. I thoroughly enjoyed watching my son laugh hysterically at the bubbles. His eyes glistened in amazement at the realization that he could blow his own bubbles. He was completely covered from head to toe in the bubble mixture, and he was having so much fun that we could have cared less. As we sat there some of the neighbor kids came out to play as well. James David adores them and the attention they give him. As a went inside to clean I could hear them laughing outside as they played with bubbles and balls. It was music to my motherly ears. I am so grateful to live where the other kids accept and adore my son.
As we wind the day down he crawls around the livingroom with his toboggan pulled over his face, trying not to run into things. Occasionally he takes a break to eat some more hotdog and watch his beloved Sesame Street. Oh, its a very good day to be a little boy. :)
It all began with James David's very first dentist trip. I of course being, the dunce I am, left his med port open on his gtube last night. For those of you that don't know 440 ccs of Pediasure results in a very wet, sticky, unhappy boy when he wakes up, and a very stinky mattress for mommy to try and clean up. As a result of this mishap, we arrived late to his appointment. With 3 pages of paperwork (which normally wouldn't take that long, but my son happens to have a lllooonnnggg medical history). I also happened to forget my license :) But after much ado we finally got back into the office. Surprisingly, James David did very well. They office was decorated with murals on the walls, toys everywhere, and airplanes hanging from the ceiling. It was childhood utopia. We luckily had an appointment time with older kids, so he wasn't afraid of them. His teeth look great, and the last of his two-year-old molars is coming in now. They praised me for how well I have taken care of his teeth, but to be honest, the boy just has good genetics because between feeds, meds, and caths, I'm lucky to remember to brush his teeth once a day. The real fun when it came time to leave. My son gladly watched me walk out the door without him and went right back to playing. I literally had to drag him out of the office because he wanted to stay and play all day...
After naptime this afternoon it had cooled down enough for him to go outside and play. Some of his medication causes him to overheat so we have to stay inside some days. I laid in the grass with him and we blew bubbles for about an hour, and it was pure bliss. I thoroughly enjoyed watching my son laugh hysterically at the bubbles. His eyes glistened in amazement at the realization that he could blow his own bubbles. He was completely covered from head to toe in the bubble mixture, and he was having so much fun that we could have cared less. As we sat there some of the neighbor kids came out to play as well. James David adores them and the attention they give him. As a went inside to clean I could hear them laughing outside as they played with bubbles and balls. It was music to my motherly ears. I am so grateful to live where the other kids accept and adore my son.
As we wind the day down he crawls around the livingroom with his toboggan pulled over his face, trying not to run into things. Occasionally he takes a break to eat some more hotdog and watch his beloved Sesame Street. Oh, its a very good day to be a little boy. :)
Tuesday, March 12, 2013
Love My Snuggle Time
Snuggle: (v) to nestle into or draw close to (somebody or something) for warmth or from affection.
Snuggling is something every mother looks forward to upon receiving the news of expecting a child. At least I know I did. I looked forward to lazy days watching TV on the couch, or him snuggling in my bed after he had a bad dream. However, once my child passed 4 or 5 months old, I've rarely got to experience this outside of post-operative medication induced snuggles. We mostly show affection by holding hands. Tonight, on the other hand, I got to snuggle! That's right ladies and gents, my lil monkey man rolled over while I was putting him to sleep and nestled his little head into my chest AND put my arm around him. (I about fainted in astonishment).
Its little things like this, that remind me everyday of the leaps and bounds we are overcoming. :)
Last Friday we went to the zoo :)
We had a wonderful time. Its crazy how fast he is growing up! I'm enjoying being a stay-at-home mommy and getting to experience all the wonderful little things about my little boy that I love and being a mommy :)
Snuggling is something every mother looks forward to upon receiving the news of expecting a child. At least I know I did. I looked forward to lazy days watching TV on the couch, or him snuggling in my bed after he had a bad dream. However, once my child passed 4 or 5 months old, I've rarely got to experience this outside of post-operative medication induced snuggles. We mostly show affection by holding hands. Tonight, on the other hand, I got to snuggle! That's right ladies and gents, my lil monkey man rolled over while I was putting him to sleep and nestled his little head into my chest AND put my arm around him. (I about fainted in astonishment).
Its little things like this, that remind me everyday of the leaps and bounds we are overcoming. :)
Last Friday we went to the zoo :)
 |
| This is him feeding the pelicans. That's right, MY son held a dead, slimy, cold fish. and threw it to the birdies! |
 |
| SEE! |
 |
| And he rode a giraffe! (I think he was a little sleepy) |
 | |
| Superman says, "Goodnight!" |
Thursday, February 7, 2013
How do you feel?
Sensory processing disorder or SPD is a neurological disorder causing difficulties with taking in, processing, and responding to sensory information about the environment and from within one's own body.
We first noticed James David was "sensitive" at just a few months old. He had a severe startle reflex. Any sudden or loud noise would send him into a fit of crying. This would last sometimes for hours, and he couldn't just "cry it out". He would cry as long as he was in the car. There was no laying him down until he stopped. He stayed upset until he felt comforted or distracted. He still gets this way sometimes and will sometimes cry so hard he will pass out or vomit. This would happen two or three times a day.
As he got older we noticed more and more things upset him. He did not like being around other children his age. He didn't like loud or flashy toys.He would not get his hands dirty at all. No painting, no feeding himself, no grass, no bubbles, no dirt, no play-do. To make things harder, he didn't like to snuggle. I had to find new ways to comfort him. A pillow on my chest for him to lay his head on, patting his bottom, and Sesame Street on the TV. As you can imagine, this scenario was not always available, especially in public. We learned to accommodate James David's emotional needs as best we could, but I felt I was failing him.
Everyday we were faced with multiple bouts of hysteria. We stopped going in public to avoid meltdowns. We were up several times a night, and I just didn't know how to help my son. Then a friend recommended I research SPD, and research I did. James David fit so many of the symptoms, that I felt like a light went off in my mind! I mentioned it to his Occupational Therapist and she agreed. Although James David isn't old enough to officially be diagnosed with SPD, we started treating him for it anyways.
Treatment is brushing. Brushing is just that. We take a special brush and brush down his arms, legs, and back every diaper change (approx 2 hrs). I'm not 100% sure how it works (something about stimulating nerves) but it definitely works for us! We've been doing it a few months now and my little man loves play-do, and popping bubbles! He even finger painted the other day! He plays with other children (sometimes) and he is eating so well, making messes like little boys should! We rarely have "melt-downs", maybe once or twice a week. Who knew little baby massages could change our lives drastically?
But it makes you think. That kid that's bratty at the store, maybe he's acting out because he's truly afraid. The kid that refuses to get messy, maybe they aren't stuck-up, perhaps the feeling of that something is truly painful to them. I have found I (and most people) have sensitivities. Do not judge children or people you do not know. Their reaction may be to something you can't see, feel, or understand. Not all disabilities are visible.
We first noticed James David was "sensitive" at just a few months old. He had a severe startle reflex. Any sudden or loud noise would send him into a fit of crying. This would last sometimes for hours, and he couldn't just "cry it out". He would cry as long as he was in the car. There was no laying him down until he stopped. He stayed upset until he felt comforted or distracted. He still gets this way sometimes and will sometimes cry so hard he will pass out or vomit. This would happen two or three times a day.
As he got older we noticed more and more things upset him. He did not like being around other children his age. He didn't like loud or flashy toys.He would not get his hands dirty at all. No painting, no feeding himself, no grass, no bubbles, no dirt, no play-do. To make things harder, he didn't like to snuggle. I had to find new ways to comfort him. A pillow on my chest for him to lay his head on, patting his bottom, and Sesame Street on the TV. As you can imagine, this scenario was not always available, especially in public. We learned to accommodate James David's emotional needs as best we could, but I felt I was failing him.
Everyday we were faced with multiple bouts of hysteria. We stopped going in public to avoid meltdowns. We were up several times a night, and I just didn't know how to help my son. Then a friend recommended I research SPD, and research I did. James David fit so many of the symptoms, that I felt like a light went off in my mind! I mentioned it to his Occupational Therapist and she agreed. Although James David isn't old enough to officially be diagnosed with SPD, we started treating him for it anyways.
Treatment is brushing. Brushing is just that. We take a special brush and brush down his arms, legs, and back every diaper change (approx 2 hrs). I'm not 100% sure how it works (something about stimulating nerves) but it definitely works for us! We've been doing it a few months now and my little man loves play-do, and popping bubbles! He even finger painted the other day! He plays with other children (sometimes) and he is eating so well, making messes like little boys should! We rarely have "melt-downs", maybe once or twice a week. Who knew little baby massages could change our lives drastically?
But it makes you think. That kid that's bratty at the store, maybe he's acting out because he's truly afraid. The kid that refuses to get messy, maybe they aren't stuck-up, perhaps the feeling of that something is truly painful to them. I have found I (and most people) have sensitivities. Do not judge children or people you do not know. Their reaction may be to something you can't see, feel, or understand. Not all disabilities are visible.
Wednesday, February 6, 2013
A Little Boy's Appetite
Appetite: (n) a desire to satisfy any bodily need or craving.
An appetite is a curious thing. There are many descriptions and meanings of appetites. However, it is most commonly recognized with ones desire to eat. For some reason unbeknownst to us, sometimes James David's brain doesn't register appetite or hunger. In October, after losing weight instead of gaining it I was faced with a decision: Chiari decompression (a very risky brain surgery to remove pressure from the back of his brain that is malformed and in his spinal cord by removing part of his skull and vertebra that may or may not alleviate his symptoms or g-tube placement that also may or may not work (we had an NG tube that failed miserably). After many tears and prayers I decided on the g-tube (gastrointestinal tube )feeding tube)). Since then he has gained 8 lbs!
It has been a long journey these last few months. We started off doing 4 feeds a day and one over night. We learned how to use all kinds of equipment. We constantly have a cooler full of formula with us. We've dealt with an oozey, crusty tummy, and learned all about tube sizes, granulated tissue, and stomach ulcers. And all these things require flip flopping different medications. Remembering tube feed times and pump alarms going off in the middle of the night has just become part of our daily routine. But it is nowhere near as hard as I thought it would be, and I feel now it was the best decision I have ever made for my son, though possibly one of the hardest as well.
Earlier this week we were able to move down to 3 feeds! That means he's eating by mouth! Although his diet mostly consists of Vienna sausages and cheese, we have made leaps and bounds in his eating! He loves scrambled eggs and he eats all kinds of chips and breads. We've recently got him eating green beans and a blueberry! This is an enormous achievement because James David is overcoming his gag reflex and his Sensory Processing Disorder. Yup, We have a new diagnosis of SPD. ( I'll write more on that tomorrow).
The fact that my son is eating, gaining weight, and living healthily, is something I had begun to doubt I would ever see. Most people would never be so elated over macaroni and cheese all over their child, or probably don't remember the very first time they ate a candy bar or cookie dough. To see that cute little face all stuffed with biscuit makes my heart skip a beat. The fact that they made cereal with Elmo on the box and that he snacks it all day is truly amazing! These are life for you, but they are everyday miracles for us.
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