Perks of an SB kid!

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! ;)

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...:

• ...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.

I thought these would be pretty simple to accomplish with a little determination, a firm hand, and a never wavering routine. We would all smile. My house would be picturesque. James David would come up, ask for some more carrot sticks, and go happily back to his playing. In my mind, just because he couldn't walk these would be so easy to accomplish.What I never saw coming was... Sensory Processing Disorder. 

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.

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. :)

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.

Read more: http://www.whatchristianswanttoknow.com/bible-verses-about-strength-25-encouraging-scripture-quotes/#ixzz2aOu2IDoQ

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. :) 

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 :) 

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)

  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 :)

Superman says, "Goodnight!"

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.

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.

From the Trenches

I write to you today from a dark cold place. The past week has caused me to reevaluate my whole life, and where it shall go. We are back in our home away from home at Children's of Alabama. James David had shunt revision #10 this week. Before this he was doing amazing. Making strides in his eating and social skills. (I've never seen the boy eat so much. I was so ecstatic!) Then, as it often does, everything changed seemingly over night. My happy go lucky and dare I say "normal" two year old turned a complete 180 degrees.
Wednesday, what we thought was a stomach virus turned into the most symptomatic shunt malfunction we've had so far. Surgery went well, but I could see the stress in his neurosurgeon's eyes really just not knowing what to do with the little boy he and his staff (my co-workers) have come to love. Nothing he tries seems to work, and its not his fault. James David's body just doesn't cooperate with his efforts.
Thursday, tiny man perked up and we went home! :)
Friday, 4 am brought more vomiting and lethargy... All morning was spent in the ER with tests run and doctors and nurses swarming. James David had them scared, and that made me terrified. All I could do was hold him. They finally got him stabilized and admitted. They still don't know whats wrong.
Saturday and Sunday, he has his good moments, but he won't take hardly anything PO (by mouth). He's fussy and he sleeps a lot, but he still manages to put a smile on everyone's face. I have finally given in to the fact that a g-tube will be best for him. We are hoping to get it placed tomorrow. Going from a full-time breastfeeding mom when all I could do was feed my son when he was born to having to rely on a machine to supply him with nutrition is one of the hardest decisions I've ever had to make. I grieve the thoughts of cooking dinner for me and my son or being able to treat him with snacks after school. No matter what I try to give him, he just looks at me and says "Mommy, no." and I don't understand this...
I'm worthless right now. I barely eat. I barely sleep. I just stare and cry (and creep on facebook). I've missed all my classes and have fallen way behind in my studies. I just cannot focus. I'm realizing now that Med School is impossible for me, no matter how badly I want it. I love the Brain and CNS so much! I'm so insanely passionate about it! Its amazing and complex and just miraculous. However, I cannot do medicine, and be James David's best mommy. It's not in the cards for me. I'm at my wit's end...

Hydro... what? That's something with water right?

September brings a lot of things. It brings fall with cool weather and changing leaves. Classes start back, and it brings college football. But you all don't need me to bring your attention to these things. You're living them with me. One thing you probably don't know is, September is Hydrocephalus Awareness Month. Please don't stop reading here. The love of my life was born with this. It effects our everyday lives, and it could yours one day too.

*DISCLAIMER: I am not a medical professional, nor do I pretend to be. This blog contains information in my own words to help educate my family and friends on my son's condition. For medical advice on hydrocephalus, please seek a neurosurgeon. For more information on hydrocephalus you can explore The Hydrocephalus Association.

What is hydrocephalus? " Hydrocephalus is an abnormal accumulation of fluid—cerebrospinal
fluid, or CSF—within cavities called ventricles inside the brain." Also know at "water head" or "water on the brain". It is commonly treated by the surgical placement of a shunt. (A medical device consisting of 3 parts: the ventricular catheter, a small tube inserted through the brain into one of the ventricles; the reservoir and valve, a hard, small piece placed under the skin on the outside of the skull where the valve regulates the drainage of CSF based on inter-cranial pressure and where neurosurgeons can "tap" the shunt to check the flow of CSF and test for infection; last is the drainage catheter (a peritoneal catheter in James David's case), the longer catheter that drains the CSF from the valve and redirects it to another part of the body where is is reabsorbed. However, shunts are not a "cure", but a mere treatment for hydrocephalus. Shunts can malfunction, and may possibly need to be revised. Another, newer treatment for hydrocephalus is an Endoscopic Third Ventriculostomy (ETV). This is where neurosurgeons place a hole into the bottom of the third ventricle to all CSF to communicate more freely between the ventricles. This as well is not a "cure" for hydrocephalus, and can also fail and need to be revised when the hole in the ventricle grows back together.

Our story: We were aware of James David's hydrocephalus (as his other medical conditions) before he was born. We were told there was almost a 100% chance he would need to be shunted after birth. The days following his birth his head circumference continued to grow...

At five days old our amazing, wonderful neurosurgeon made the decision to shunt James David. We were told of all the risks and benefits of a shunt, and that there was a chance it would one day have to be revised. Little did we know that just a week and 2 days later this would become our reality and send us down a road no one thought we would ever travel. To date we have had 8 more revisions totaling to 9 revisions. My kid is rare ;)  My precious son doesn't play by the rules. He writes his own book. Compared to other kids I've seen in shunt failure, James David barely shows symptoms. He is tricky.
James David's known shunt malfunction symptoms:

• Insomnia
• Fussiness
• Anorexia
• Swollen spinal closure
• Head Banging
• And sometimes, but not always, Swollen, Full fontanel.  

 Hydrocephalus effects our everyday lives. Every headache, tempertanturm, spit up, anything constitutes panic on my part. However, it does not slow my tiny man down. Other than slightly delaying his speech, my little man is showing no side effects of his condition. He is still the smart, funny, determined, little man he has always been. We hope to bring light to this condition. How common it is. How it effects those with it. And to help support research for a CURE.
 

Things on my mind...

A few thoughts for the night...

Because I love Will Smith, and he speaks some serious truth.

James David watched this movie for the first time tonight, and he LOVED it. Now if I could get him to poop, my night would be complete :)

Normal? Yea, right...

Normal: adjective; conforming to the standard or the common type; usual; not abnormal; regular; natural.

This was some of my notes from chemistry today:

I really despise how lonely I am. I'm friendly. I really am, but for some reason I must seem unapproachable. I have nothing to talk about with my peers. I haven't seen the latest movies or been to the social functions. My life is filled with bills and baby and doctors and responsibility. How can I talk about something I don't know? When my mind wanders past my daily tasks, I find it in foreign countries amongst the poverous, or down alleys and city streets. I don't aspire to see France or the extravagant places of the world, but instead the pits and scum. I find beauty in mere human life. I see it in the eyes of an 8 year old girl raising her five younger siblings, while her mother prostitutes to feed them. I see beauty in pure human life, and that's all I wish to continue to see.

Yep, I'm weird, abnormal, odd, queer, unusual, and whatever other synonym you can come up with. This writing was provoked by the thoughts coursing through my brain when people chose not to sit next to me in class. Why? I've always been different than my peers, and I've never really understood why. I did today. I've lived more. I have depth. I've seen things, experienced things that my classmates can't even fathom. I don't understand how to communicate with them, nor them with me. Shallow casual conversation just isn't in me. I can't change who I am, and I don't want to. I'm going to change the world one day (not arrogance, just fact). They aspire to be the biggest hit at the next frat party, and I aspire to provide clean water for Sub-Saharan countries.

The hardest part comes when I'm thinking about my future. School and the here and now, I can handle being a little lonely. But will I find love? How do you love a woman who has a disabled child, and wants to go to Med School, and then wants to travel the world and take care of poor people? I want someone who hurts for them like I do. Who is willing to chase the stars with me? If I decide to be a rich state-side neurosurgeon, or a Tanzanian orphanage director, or a Humanitarian aid worker, or whatever I do. Serious stuff, right? Yea... welcome to my mind :)

I'm weird, World. Period. I spend my days taking care of James David where my two main questions are did he eat today, and did he poop today? I like reading, and Will Smith, and Star Wars, and museums. My dream job is cutting at peoples brains in a third world country. I know I'm odd, but its what makes me me and I love me. :)

 

Single-mommydom

The newest decoration in my apartment.

Single-mommydom: The place in which all single mothers live. The one where you sacrifice all for your child. Where you cook and clean and bathe and play and read and tuck in 24/7. Where at the end of everyday your hair is always a mess and your clothes are stained and you smell slightly off. But despite all the adversity, you get to experience all the love and adventure that makes it all more than worth while :)
Today is James David's 2nd birthday! However, you would not have known it by the way today went. It did not start with a delicious chocolate chip pancake breakfast, but to a mom rushing out the door because she's running late, and trying to force her tiny man to drink his pediasure. There was no day to spend together. No hoorah at the zoo, or anything else spectacular in little boy world. Instead, little man went to school where he got to be the line leader all day! :) Mommy went to school, and then to work. I battled insane traffic and picked up a very tired little man (apparently little boys don't nap on their birthday). He slept on the way home. Then we opened up all his birthday toys! My living room has been transformed. We set up tents, and railroad tracks, and barns. My apartment has been turned into little boy world. After not eating dinner, (if you've been keeping track that comes to a big ole total of NOTHING that he's eaten today) we settled down to go "Night Night". I had it in my mind that I would tuck him in, and tell him all about how he came into the world. A special journey for a special little boy. How perfect God created him. However, after an hour of hysteria, and vomiting three times, I found myself curled up in a firetruck bed with my little man, his sleepy little face finally resting. Its moments like those that are my saving grace.
I realized in that moment, staring down at my son as I have so many nights since he was born, and felt nothing but unconditional love. I knew that although my day wasn't perfect, or as adventurous and fairytale as I would have wanted it to be, it was MINE. I know that one day James David will be proud of him mommy for following her dreams. One day I will give him something that will top all the chocolate chip pancakes and zoo trips he could imagine. So Happy Birthday James David. Mommy loves you more than you know.

Pleasantly Placid

Placid: pleasantly calm or peaceful; unruffled; tranquil; serenely quiet or undisturbed

These last few days have been truly amazing. I have seen a side of my son that I have not seen in a very long time, and, quite frankly, was afraid I had lost. Not only has he become a connoisseur of all foods, he has become a master at sign language. My son is pure genius. I'm certain of it (as every mother is :)) Last Friday James David's daycare borrowed a ZipZac and put him in it. He took right to it. He enjoyed being able to get around without having to be face down all the time. He was so excited that he was giggling and dancing and kicking his legs all around. He was absolutely precious. The only thing right now that we are having issues with is poopy. Every night he poopies in the bathtub. He loves his bath. He just cannot understand why I have to drain the water and make him take a shower with me. He's so upset and its just something he can't control. But hey, if that's my only little-man complaint right now, I would say things are going pretty stinking well. 

On the mommy front, however, things are not so peachy. I'm having quite a bit of trouble trying to find a new job. Right now I'm spending more money than I make. That is no bueno. I've been doubting My car started making a terrible,  awful noise on Thursday. The moment I heard it, my heart sank. It ended up being over $700 in repairs. Mommy just can't catch a break. The only thing really keeping me going is the man sitting next to me. Without Jonathon, I would crumble. I love him more than I think I even know. 

An exciting note, Guess who's going to Chicago to meet some family?? This girl! That's right, after much ado, I am finally going to be meeting some of my beloved's family. My mind is all a flutter with emotions about this. What if they don't like me? What if they do like me? Will this just be another family I fall in love with only to have them torn from me at a moments notice? Or will the be the family I become a part of? The ones I will spend countless Thanksgivings and other holidays with? Who knows... but it will be a memorable experience. That is one thing I am certain of. :) 

For now, I'm just taking it day by day. Even more so, minute by minute. My days are full of ups and downs. One minute I'm worrying about money, and the next I'm staring into the eyes of one of the two men I love feeling nothing but bliss in this world of trials. There's nothing more I can do than to live in the moment. I'm just rolling with the thunder. 

Motherhood

Motherhood:the state of being a mother. (Although this is a very blatantly obvious definition, it is suitable, because you can't descride being a mother, you just have to be one. )

Do you ever have those days where you just don't feel like going on? You feel as if your whole world is crumbling around you, and you panic. You're chest tightens, you can't breathe, and you just want to huddle into a little ball until you disappear. To just cry and cry and cry until you can't anymore. Today was one of those days. And then it wasn''t.

Everything was wrong today. I won't even go into detail. Then something amazing happened. A little boy brightened my fear ridden world. The moment I walked into daycare and his blue eyes locked on me, I froze. He opened his sweet little mouth and melted my heart with just the simple word, "HEY!"

Today we played in the floor together, and read books. He ate like a starving child. Since he's started eating he has so much more energy. We crawled around and played "Monster Baby". (A game where James David growls at me and I shriek in "utter terror."). There was the ever eventful bathtime. Full of splashes and more Monster Baby. After bathtime was mommy's favorite time. He took his meds like a big boy and we had snuggle time. He drank his sippy cup in my lap and gave me hugs and kisses and loves. He is the sweetest little snuggle bug. And then it was bed time. :)

It amazes ,me how I can love one little boy so much. He has no idea how much he means to me. How much he affects my evryday. I will never be able to thank him enough for the whole new world he has opened to me. The marvelous wold of motherhood.

Adversity

Just a reminder: This blog is more of my journal. I keep it so that people will know whats going on in our lives and to help me vent. Please read, digest, enjoy, whatever... but do not comment. If you have something you feel you MUST say, send it to me in a private message and I'll be happy to read it.

Adversity: (n) adverse  fortune or fate; a condition marked by misfortune,calamity, or distress:

Easter weekend was pretty bring around our home. I worked most of the weekend, and the rest of it was spent going back and forth between family members houses doing the same ole mundane things. James David has a new word, "toes". That was pretty exciting. We also discovered he has pretty much no interest in chocolate (like most other things edible, with the exception of cheese.)

Sunday evening I noticed a little knot behind James David's right ear. He did not like it when I touched it! I gave it a few days assuming it was probably a swollen lymph node. Over the course of Monday and Tuesday he became very snuggly and would just lay on my chest and watch TV when we were home. They said he was doing very good in school, though. So, with the knot still behind his ear yesterday afternoon, I took him to his pediatrician.

As I assumed, it was a swollen lymph node, but his white blood count is normal, indicating no sign of infection. It's probably just his body reacting to his surgery a few weeks ago, and should go away in time. YAY! I like getting good news. :) Unfortunately, the good news was followed with not so good news. James David has lost another pound. This puts his total loss at 1 1/2 lbs in the last 6 months. At 19 1/2 months old my son only weighs 16 lbs and 5 oz. He is plummeting off the charts. He was given an antihistamine that is known to help increase appetite, since he is already drinking 3 Pediasure a day. We also have an appointment to see a nutritionist and scores of blood work to have done. There's talk of a feeding tube. On a worse note, I also noticed that James David's head looked "normal" yesterday instead of its regular concave shape in the front. Meaning his fontanel was fuller. Meaning that his shunt was not draining as well as it needed to be, hence the snuggly-ness and spacy-ness. It was better this morning, but it tends to fluctuate. I'll be keeping an extremely close eye on that like always.

After the days events we went home and did one of James David's favorite things in the whole wide world. He took a bath. We played and played with his new bath boat and sailor. Laughing and splashing and having the time of his life. Just him and mommy. As I played with my son, seeing his slightly swollen head (occasionally keeping him from laying down in the water), counting his ribs as he crawls around the bath tub, I just looked at him in amazement. Despite his adversity he is still having a marvelous time just playing.

 I looked at him and was taken back to the ultrasound room at UAB's Maternal Fetal Medicine clinic. Where they told me about Spina Bifida. All those appointments where they switched their stories from he would only live a few hours to telling me how non-severe his case was. Which they were right, his legs function is phenomenal. But what they didn't see coming was his Hydrocephalus. Sure they knew he would need a shunt, but I remember being told how rare multiple revisions were and that statistically my son should be A-OK. Eight shunt revisions later I just want to look at those doctors and be like, "What the hell?" Nobody could have saw this coming though.

Its times like these I just want to take my son and run far, far away. Protect him. Take him somewhere and start over, but that is foolish because no matter where I take him, his health will remain the same. I want to scream and break things I get so angry. Why can't he just be allowed to be happy and healthy for more than a few minutes? I want to crawl up and cry. Sob. Scream. But none of these things will fix anything. If I breakdown, I don't know if I'll be able to get back up. So I keep my big girl pants on. I work two jobs and put off cooking and cleaning and anything else I can to spend a much time possible (as little as it seems) with my son, because deep in the back of my mind I wonder how long I truly have. I'm bracing for the new doctors and the new tests and I'll take whatever is thrown my way in stride. It's part of life. No matter how much we dislike the rain, we need it to grow, and that's where the love comes in.

MINE!

Mine:
1. something or someone belonging to or associated with me

Today I dealt with selfishness at its finest. It all started when I slept in. It was great, but so not worth the rush. So after dropping James David at daycare and speeding and aggressively driving all the way across the state (or at least it felt that far), I groggily stepped out of my Sebring, and begrudgingly headed into one of my least favorite places in the world, Blount County Courthouse. 

My parents filed for divorce September 2009, and everything still isn't settled. I have watched the people who raised me turn into children all over again. The very people I thought I knew, who I have known since birth, I no longer know. So instead of working my marvelous job, I sat in the courthouse waiting and waiting to testify about who is the best parent, who did what to the carpet, and who does the washer really belong to? That time never came. After 6 1/2 hours of waiting, they issued a continuance. So I get to spend another long day, with no pay, back in my favorite place in July! yay...

Also...

James David has a new favorite word. Replacing the word "shoe" is, you guessed it, "MINE!" Everything is "mine". The teddy, the shoes, the remotes, me. Everything except his supper. My stubborn little boy got force-fed yogurt for supper tonight. That was the highlight of my day. HA!

So now as the night winds down, and I sit here to reflect on the day, I think about the immaturity of the day. So many people, young and old, fighting for things that are "mine". Yet, I can't help but think about all the things that truly are mine, and be grateful for them. I am truly blessed to have a home, food, family, and love. (See I'm not all negative ;))

Realization

Realization: (verb)

1. to become conscious or aware of (something)

Today I had a realization. I was standing in the hot kitchen at work talking about James David with a coworker. He's had surgery recently and a brief battle with constipation. Because of these he has lost some weight, and he is already very under weight for his age. Describing to her how I can count his ribs, how no matter how hard I try he won't eat most of the time, how I'm not sure what will come next (a feeding tube?), she looked at me with the most serious look on her face. Her eyes locked with mine and she simply asked, "How do you do it?" In that moment, I felt as if someone could really see me. The sounds of the noisy kitchen around me silenced and all was still. She made me think, and I replied honestly to her, "I have no idea." I really don't. I just wanted to cry. This chick got it. At that moment I felt her, and she felt me. Day to day is a struggle, a blessing, an adventure, a mystery, a life all rolled into one.

I feel like no body really sees me. That's why I chose to write this blog. Refreshing it. A brief look everyday into our lives. I don't want comments. Message me privately if you must. But no more being transparent. Today I realized that I am much more than most see. I'm more than the struggling mom at Ruby Tuesday. There are words and thoughts inside me dying to get out. So here they are! :)

The Illusive UTI

Our grand adventure started this past Sunday, as I stopped by James David's dad's to pick him up after work. Dad said he had been clingy all day, and when I pick him up I immediately know why. He's running fever. 101.5. And he has this weird rash on his left thigh. Well crap. On the way home I call the Ped's after hours line. Like always, because he has a VP shunt they tell us to head to Children's ER.

Upon arrival I tell the triage all about his condition and show them the rash. Because he has a shunt we go straight back (Probably the only perk from it is no waiting rooms). Since he is running fever they give him some motrin and it almost instantly (as quickly as motrin can) resolves. Since we had two shunt revisions last month, they are very worried about infection. They do a head CT, shunt series x-rays, a shunt tap (getting almost no CSF), and (bc I requested) a urine analysis.After all this they tell us they can't really find anything, but they are gonna run a few more tests and admit him for observation (Talk about making you feel like a lab rat in a science experiment). 

So there we were, home sweet home on 6NW. Our favorite wing of the hospital because they have the best rooms and the least pushy nurses. Only to my dismay, as we enter the room I find that it is missing my two favorite things: the window and the couch. Upon further investigation I learned that they had to put in a stair case to go to the new wing of the hospital and so they had to shorten that room, but not to worry they weren't allowed to keep us there more than 23 hours because we could go crazy not knowing the time of day with no window (real encouraging). 

The next day came and we met with the neurosurgeon who was very confident that it was not a shunt issue. (Praise the Lord). So he passed our case along to the urology team. After much ado, they determined that it was a minor UTI (How hard is that to figure out really? Either there is an infection or there isn't.) But I learned this from our neurosurgeon (possibly the coolest doctor ever) that neurogenic (did I spell that right?) bladders are consistently dirty bc they don't ever empty. But the urologist gave us a prescription to clear up this infection and another to take to prevent further infections until his circumcision next month (This will supposedly sure all of our problems. We'll see...) and told us we could be on our way the very next morning. They also found a bacteria in his bladder that is contagious and put him on contact isolation. Yay for yellow gowns and blue gloves for every foreigner who enters our room. This has happened to us the last 3 hospitalizations. What gives?

But with our new sickness mystery solved we passed our time wandering the hospital making new friends, sitting in the cat walk and watching the cars at the stop light, going to the library, and celebrating James David's 31st day of hospitalization (Yay for a whole month of his life in white-walled, disinfectant territory). The next day (now Tuesday) and we prepared for our departure. But it never came. Neurosurgery came in and checked on us and said Urology would come  by later and discharge us. By 13:30 I was getting impatient. After finally bugging the nurse enough (Poor Mary...) she found out that neuro forgot to tell uro that they were supposed to come by, and they were fighting over who should officially write our prescriptions. Uro finally gave in because it was obviously a urological problem. As I wait on our prescriptions at the Out-Patient Pharmacy I am told that the doctor forgot to write in the dosage for the antibiotic. I look it over and low and behold it was written by a neurosurgeon... (Really guys?) But the awesome pharmacist gets it handled in a jiffy, only to tell me that I will need prior authorization for that prescription and to have it filled at our hometown pharmacy... But regardless, after two virtually sleepless nights on a very uncomfortable, tacky blue plasticy, pull-out hospital chair we were finally on our way home :) We celebrated by chilling on the couch and watching Sesame Street all night.

Our crazy life :)

Things have been pretty crazy around here. 

We recently even went to a doctor appointment ten days early. Who knew the 6th and the 16th could look so similar on an appointment slip?? But we are always over prepared to see our favorite neurologist. :)

Yea so short of mommy losing her mind we haven't been up to much. 

Our days are filled with snuggle time, Sesame Street, therapy sessions (still no luck on crawling), petting the puppies, eating lots and lots of baby food, and our favorite: Bathtime :) 

He has discovered his love of swimming. Drinking the water is his favorite part, but splashing is a close second. 

We went in for his 9 month check up and he's still a tiny guy. 16 lbs and 26 in. lol He's still in 0-3 month clothes. But I love my tiny guy. :)

Ordinarily Extrordinary

Today started the same as any other. 

Get up at 5 a.m. and feed James David. Then, go back to sleep. 

Get up at 7 and watch Sesame Street. Go back to sleep. 

9 Feed James David breakfast and give him meds and get puked on. 

Then off to cleaning and other normal day jazz.

But then, during a completely normal therapy/play session (You know the ones where I end up extremely frustrated because all he wants to do is roll to his back and then lay there and yell at me) something amazing happened!

It was slow at first, and I was almost unsure as to if I really believed it happened. 

But then it happened again and again. Getting more definite each time. 

Sure as the grass is green James David pulled his knees up under him! 

Once he got them there he would usually push them right back out, but once or twice he did rock back and forth. 

It was nothing grand or spectacular. He didn't get up and crawl away (or anywhere for that matter), but it was a small victory in our day. A brief reminder that we will get there someday. A glimmer of hope in his pretty blue eyes. 

Then the day carried on as normal. Dishes were done. Laundry was folded. And everything went back into its usual routine.

But as I crawl into bed tonight you better believe that my mind will drift back to that joyful moment that I saw my son do something he was told he may never do. I saw him defy the odds, grow confident in himself, and be as stubborn as his parents, no matter how scared he might have been. These are the moments that I live each day for, and this is the one that will brighten my dreams tonight.